Hydrocephalus Mobile App hopes to be new mHealth Test

The DiaCeph Test was created in 1997 to evaluate CNS shunt performance in patients with the disorder, hydrocephalus. It is a mathematical formula and algorithm born out of my experiences as a patient and patient advocate, and from 18 years of experience in diagnostic nuclear medicine, including, with hydrocephalus and software.

DiaCeph’s algorithm uses a weighted probability of a patient user’s clinical complaints, or complaint markers, to the most likely of (17) types of malfunctions that can occur with a CNS shunt. The results are displayed and ranked in order of probability. In addition, the markers are plotted on time vs complaint level graphs, where they are compared to the patient’s baseline markers and earlier shunt outcomes. The impetus for creating the DiaCeph Test came from my poor post surgical outcomes and frustrating diagnostic experiences as a patient user for hydrocephalus following a 1992 auto accident. I’ve used my DiaCeph methodology (paper forms) to track the shunt outcomes, make shunt valve pressure predictions, and diagnose shunt malfunctions for my last (8) shunt revisions. Still in 2016, there is no reliable diagnostic means to determine how well a CNS shunt is working. The DiaCeph Test could readily be made into a mobile app, providing the necessary funding, administrative, and FDA regulatory requirements can be satisfied.

The DiaCeph paper methodology could easily be produced as a mobile data app.

DiaCeph Test born out of FDA Petition/Unmet Need in Hydrocephalus

Hydrocephalus is the leading neurosurgical disorder in children, often resulting as developmental changes in utero, shortly after delivery, or by brain cysts early in life. It occurs in seniors in the form called NPH, or normal pressure hydrocephalus, and in the past NPH was often confused with dementia and/or Parkinson’s Disease. It can also occur following trauma and tumors in the brain. It is most often treated by surgical insertion of a “CNS shunt,” which the patient will live with the remainder of their life, and which are very problematic technology often requiring surgical replacement.

My DiaCeph data app slide above is from my original (1997) design of the DiaCeph Test. This came out of my research in authoring an important 1996 FDA petition on anti-siphon shunts. I was familiar with hydrocephalus and CNS shunts from my many years of diagnostic work in nuclear medicine, where I worked with software and regularly wrote procedures, and occasionally basic software code.

Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition that was then used to direct this 1998 shunt surgery

I had been a patient user of CNS Delta valve shunts for hydrocephalus since 1992, and had experienced unexplained poor outcomes from three surgeries over a period of four years. In 1996, I learned of a new critical study published in the Journal of Neurosurgery by a well known Japanese neurosurgery group, that cited specific safety & performance issues with Medtronic PS Medical Delta Shunts & Anti-siphon devices that seemed remarkably similar to complaints I was experiencing. Sadly, neither my treating physicians, shunt manufacturers, or the Food & Drug Administration were able to help me.

In November of 1996, I petitioned the U.S. Food & Drug Administration (FDA) Center for Devices and Radiological Health with this important FDA petition on CNS anti-siphon shunts, concerning problematic CNS shunt technology which I had been implanted for 4 years, and was experiencing unexplained poor outcomes. It was in 1996 that a critical study was published in the Journal of Neurosurgery regarding the risks of using anti-siphon devices. The petition took me almost a year to prepare, and required that I obtain supporting FDA records on microfiche, obtain and learn the federal government’s applicable CFRs to CNS shunts, pay a librarian consultant for many of the (52) cited studies, and carry on correspondence with Ralph Nader’s group Public Citizen.

What I learned, was that between 1976-1996, many thousands of patients had been implanted with Medtronic Delta valves & Heyer-Schulte anti-siphon shunts and that about one-third of these were experiencing the kinds of poor outcomes as cited in the Higashi et. al. J. of Neurosurgery study. Higashi and his team described these shunt performance issues as “functional obstructions” of the CNS shunt system, most of which occured in the upright posture. However, some were reported with sleeping and other external pressure over the body of the shunt valve. What made the problem particularly challenging, was that there was no available (in-vivo) diagnostic test to identify and quantify the issue in patients. Available CT/MRI and shunt patency testing was usually “negative” for shunt malfunction, which is termed a “false negative.” Higashi and his team then cited the need for a new type of diagnostic test to identify these shunt outcomes issues in affected patients. Once I authored my petition, my next challenge was in creating a new type of test to evaluate these shunt performance issues.

I sought out a method to chart & analyze non-invasive clinical markers in hydrocephalus in different postures, and during different times of the day. This was 1997, and the same year researchers at the U. of Pittsburgh and Henry Ford Institute, were quietly doing this to monitor sports concussion. It took me more than a year, during which I also consulted aerospace scientists on possible math formulas. Once it passed the first proof of design phase, I expanded my test to evaluate any type of problem with any type of CNS shunt. And then I aptly named it the DiaCeph Test. Dia– meaning to diagnose. And Ceph– meaning of the brain. The design and proof of concept were completed in Sept. of 1997. And then I began using it to evaluate my Delta shunt for corrective revision.

Initially, I was going to “give my method away” to one of the shunt manufacturers. But it was a friend from little league baseball who convinced me to try and PATENT it. Which I did via the law firm Knobbe Martens Olson & Bear. The photo above was taken just days after my Feb. 1998 shunt revision where I used the DiaCeph Test to help determine which type of shunt would fit my CSF outflow needs.

 

My experience in nuclear medicine and working with hydrocephalus and diagnostic software proved invaluable in the creation of the DiaCeph Test. Over my 18 years of nuclear medicine (beginning in 1975), I had authored hundreds of diagnostic procedures, set up hospital imaging procedures, started and run an imaging company, and provided diagnostics for a wide range of medical conditions. Two of those tests for hydrocephalus were cisternograms and shuntograms.

In 1997, my DiaCeph Test was so new, it didn’t have a category name. But today, these type of applications are widely termed, “mHealth.” As such, my DiaCeph Test design was one of the earliest mHealth tests, and remains state of the art still in 2016. But, designing it was no simple task. I had to contend with frequent cognitive or memory difficulties, shunt malfunctions, terrible headaches, and lack of funding.

In 1998, I filed my full patent on the DiaCeph Test and formed the start-up, DiaCeph, Inc. DiaCeph was to be a dedicated PDA app, like the Palm Pilot that had just become available. The Internet at that time was just mature enough then to allow patient data and results to be sync’d with a PC either at the patient’s home, or at the physician’s office. I proposed how a server could allow uploading & sharing of patient results.

DiaCeph can analyze non-invasive user data and render a diagnosis of the type of shunt malfunction. I created a series of clinical markers (as can is seen in the slide above), and by establishing a patient’s baseline normal values, incident results could be compared and produce a diagnosis based on the change from normal. Where there was no comparitive data, the program still aggregated resulting data and compared it with the most likely data known by the program for the different types of shunt malfunction. I was advised that patients not be given access to the results by FDA and others involved in the project. Today we know its best to give patients this information. Below, is earlier web site information on the DiaCeph Test. Below that, an Orange County Business Journal‘s 1999 story about the DiaCeph Test entitled, “The Accidental Inventor.”

DiaCeph Test at DolleCommunications.com 

Stephen Dolle, Dr. Eldon Foltz, and Stephen Natawpski of Knobbe Martens are interviewed by the Orange County Business Journal regarding the invention of the DiaCeph Test, and Stephen’s FDA efforts in Washington, D.C.

Stephen Dolle interviewed in the Orange County Business Journal for his FDA efforts and DiaCeph Test invention Page 2

DiaCeph underwent initial evaluation and development at the University of California Irvine (UCI). My lead physician was the long time neurosurgeon and professor, Dr. Eldon Foltz, who was excited about the DiaCeph Test and offered to mentor me. He shared he had been trying to develop a similar test since 1980. Dr. Foltz helped me form a board of medical advisers at UCI, and introduced me as an mHealth pioneer.

After the FDA granted my shunt petition in Sept. 1998, I was invited to attend the FDA’s STAMP Technology Conference in Bethesda, MD, which was to address shunt safety issues as cited in my petition. However, the conference never did! Nor were these CNS anti-siphon shunt challenges discussed, nor DiaCeph mHealth concept. And neither was I was not invited to appear on the conference panel, despite being the person who helped create the conference. As a result, my DiaCeph Test and similar solutions never received the exposure they deserved. It no doubt hurt prospects for the DiaCeph Test at a time it was badly needed, and amid my limited resources as a patient developer.

As time went on, I looked for new novel ways to utilize the DiaCeph methodology. Below, are SlideShare.net slides of new (July 2016) DiaCeph Test NPH Instructions, a NPH 6-Marker Form, and a new Chronological Outcomes Form or “flow chart” for creating a patient record of many years with various shunts, opening pressure settings, and hydrocephalus outcomes (complaints/status) in a patient. There are instructions on how to complete the historical flow chart in the back of the NPH instructions.

These materials are FREE to use. But if you have questions or would like my assistance with monitoring or related hydrocephalus and shunt issues, please contact me directly. My consulting rates are $125 per hour.

Diaceph 5 day 7 marker NPH hydrocephalus shunt monitoring form

DiaCeph Test MONITORING INSTRUCTIONS

DiaCeph Test MONITORING FORM

DiaCeph Test FLOW CHART

DiaCeph, Inc. as a Brain Software Company

By 1999, I was exploring other brain apps & software and making plans for this as part of DiaCeph, Inc., to be an innovator in this space. This was prior to the advent of Google apps, social networking, and mobile tech leaders like Samsung and Apple. At that time, the only two mHealth apps under consideration were by Aetna’s health division for CHF and asthma. I was also in communication with Hewlett Packard, Microsoft, the Coleman Institute, and other institutions involved in assistive cognitive technologies. I presented DiaCeph to a number of university centers and medical device companies. But I could not get any committments to partner or fund it. Apparently, no one saw my vision.

By 2003, I had begun to move on to other neuroscience interests. My brain also remained significantly swollen due to unresolved and mis-understood hydrocephalus, and kept me on disability, working only part time. I could not get a neurosurgeon to undertake additional surgery without diagnostic documentation. It was a Catch 22! I believe if the DiaCeph Test were available then, it would have answered these diagnostic questions.

In the end, the DiaCeph Test was never made into a PDA app due to lack of funding, FDA regulatory barriers (costs), and lack of support from medical device companies in the field of neurosurgery. However, DiaCeph could still be produced today as a mobile data app. I wrote up a “creative brief” in 2014. The challenge now lies mainly in the FDA regulatory costs of mHealth apps, where estimates have said to be in excess of $1M. It is doubtful this cost could ever be recouped in sales of the app. So I prepared wider prospects for other neurological apps in my expanded Creative Brief.

Hydrocephalus today still faces considerable mis-diagnoses due to unavailability of imaging and mHealth solutions. Radiologists regularly mis-interpret CT and MRI brain scans, which leads to undiagnosed shunt malfunction and incorrect settings of programmable shunts. This in turn has resulted in significant quality of life issues and costs for patients living with hydrocephalus.

Below, is a screen shot of a CT/MRI mHealth Display method I’ve been using since about 2002. This helps to organize CT and MRI scans into useful formats for review by your physicians, especially when there are many scans over a period of years. At present, the link is to a blog I authored on LinkedIn. I hope to sometime elaborate further on this in a new company blog. I also consult on preparing these at my same $125 per hour rate.

Method of Organizing CT & MRI Images for Chronological Review

Innovative Dolle mHealth method allows CTs & MRIs to be chronologically oarranged and compared.

You should obtain CDs of all your CT/MRI brain scans. The method allows for review of 1000s of CT & MRI images by placing the most critical images in a chronoligcal sequence for comparison. These displays can also reduce interpretation medical errors.

To create these, I first create folders on my PC for each CT or MRI series. Then I export the images as JPEGs into the respective folders using the media software included in the radiology CD disc. Next, I review, select, and label the relevant images and copy them to special forlders where I arrange them in chronological order for better viewing. This format makes interpretation much more scientific, and it minimizes any human (visual) error during interpretation.

This method is particularly important in hydrocephalus care – where it is common to have dozens of studies and 1000s of CT and MRI images for review. This mHealth display method would benefit radiologists, neurologists, and neurosurgeons involved in hydrocephalus care and other care involving CT and MRI studies.

This method allows for more detailed evaluation of shunt settings, shunt performance, and shunt malfunction. I put these mHealth methods to good use in my hydrocephalus consults and shunt monitoring services.

Once you have assembled the critical MRI/CT Images Folders, they can be easily sync’d and copied to folders on your mobile phone and tablet device. Then when you see your physician, you’ve got all your CT and MRI images neatly organized for review.

Below, is a diagram of my current shunt valve, the Codman Certas valve, which was implanted in Nov. 2012. However, in May 2013, it was recalled due to stability issues during MRI exams.

Illustration of the Codman certas valve, an externally adjustable programmable CNS shunt valve with 7 pressure settings, and is used in the treatment of hydrocephalus.

The DiaCeph App today could be made as a mobile data app and text app (for use in developing countries). It would enable 24/7 monitoring of hydrocephalus and could be coupled with a variety of neurological, EEG wave, and other apps now available.

Additional Resources on Hydrocephalus Monitoring

Hydrocephalus NPH Monitoring by Stephen Dolle/Dolle Communications

NPH/ Hydrocephalus Monitoring

Mobile Apps, mHealth, and other Solutions for Hydrocephalus

 

I’ve been providing NPH/Hydrocephalus Monitoring Services & Patient Consults with DiaCeph paper forms/instructions since 2009. I also host FREE monitoring forms and information on hydrocephalus. My experience with hydrocephalus now spans 18 years of diagnostic work in nuclear medicine, and 21 years in FDA regulator affairs, CNS shunt reviews, mHealth design, cognition and assistive technology, drumming & music therapy, and global patient consults for affected individuals/families around the world.

I also host two consult reports on the top blog above (Hydrocephalus NPH Monitoring by Stephen Dolle). The first report was completed by a legally blind man. I provide each patient a custom set of forms and instructions. If an mHealth app were available, it would direct patients or users in the collection of this data, and then offer physicians the data in a finished format for earlier diagnoses, intervention, and surgery.

HydroPowered.org – Super Heroes

The Terminator is the ultimate super-hero for adults and children affected by hydrocephalus.

Early on, after I was implanted with a VP shunt for hydrocephalus, I began to seek creative comfort in stories about Super Heroes. As an inventor, I also began to equate living with a CNS shunt implant to the Terminator character in the movie of the same name. Eventually in 2013, I created a fun web site and Facebook page for hydrocephalus – where I began to write about “super-heroes” for hydrocephalus. Here I am today pictured below in a current photo following a speaking engagement. My rates are very reasonable, and I have a list of topics I speak on. Contact me for more information of this.

I have undergone 12 brain operations, or shunt revisions as they are termed, since my initial diagnosis in 1992. I became a shunt device, hydrocephalus “expert,” and early inventor of an mHealth mobile app, the DiaCeph Test. It was my 1996 petition to the Food & Drug Administration as a CNS shunt patient that led to my designing the DiaCeph Test. My efforts then helped bring about the 1999 International STAMP Conference in Washington D.C. At that time, many in industry felt the conference and FDA upholding my petition were heavy handed actions designed to hinder innovation in industry. But in the years since, it has been shown to be just the opposite, that without mHealth tools and patient engagement, there will be less innovation, more challenges for physicians, higher costs & disability rates for patients, and a lower quality of life for those affected. It is time for industry, FDA, and Congress to stand in our shoes! In 2015, I also published my current health challenges with hydrocephalus and a related neuromuscular disorder on my blog in this case study.

Many of the CNS shunts in use today are programmable shunts, where pressure and flow rate can be externally adjusted for each patient. But, many of these devices have been susceptible to inadvertent reprogramming from household appliances and technology magnetic fields. At present, FDA does not allow patients to own the reader or programming tool to help manage these unforeseen events. I would love to develop a mobile app or accessory tool to allow patients to check the setting of their shunts.

Other Brain Apps

I use other brain apps on the Android Play Store to help with the management of hydrocephalus, including, a Decibel Meter, EMF Detector by Smart Tools, and a Weather & Barometric Pressure app by Elecont Software. The more recent availability of EEG readers has further elevated the prospects of brain apps in neurological care, and in meditation and mindfulness – SEE my other blogs for information on these.

I advise and write about brain apps, often helpful in hydrocephalus and other neurological disorders. In this blog, I share tips on design & using apps:

Design & Best Use of mHealth Apps

And in this very popular mHealth blog, I discuss how to use a weather app for management of migraine headache:

Weather Apps and Web Sites for Management of Migraine

The slide image below is the barometric pressure reading from my Elecont weather app.

The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.

DiaCeph Development Costs and Other Barriers

Estimates to develop a hydrocephalus mHealth app are as high as $1M. Requirements by FDA are driving these high costs. In developing countries, FDA guidance does not come into play. And for those regions, a “text app” version of the mobile data software could be created to do monitoring on a standard mobile phone, and text the results to a regional hospital or clinic. My DiaCeph Creative Brief is currently 16 pages. I understand this is too large for most reviews. So I am preparing a “short” and “long” version.

I understand there are organizations who could help develop or fund my mHealth app project. My wish would be to work with a mHealth software group and provide the guidance and expertise to develop the DiaCeph app, and then advise on other applications.

Currently, development of mHealth apps for disease management have become a political ball game between patient advocates, the Food & Drug Administration or FDA (backed by big corporations), and Congress. Earlier this year, a bill was introduced in Congress by Senators Deb Fischer (R-Neb.) and Angus King (I-Maine), identified as the PROTECT Act (Preventing Regulatory Overreach To Enhance Care Technology). The bill has garnered the support of IBM, athenahealth, the Software & Information Industry Association, and Newborn Coalition and McKesson.

Shortly after introducing the act, the legislators penned an editorial in USA Today calling FDA’s regulatory process burdensome and a hindrance to innovation. One organization, with connections to big pharma lobyists, calling itself the mHealth Regulatory Coalition (MRC), has come out and opposed it. But I suspect they don’t live with a medical condition like hydrocephalus, that would benefit from these mHealth app innovations.

PROTECT Act Bill S2007

Protect Act Story on Protect Act

Groups Opposed/Conflicts of Interest to mHealth

Protect Act under Fire

Pediatric Hydrocephalus Foundation supports PROTECT Act

Many individuals with hydrocephalus have had 100 and 200 surgeries, and live a very poor quality of life. Quality of live, and unnecessary brain surgeries, would no doubt be improved with the availability of mHealth app diagnostics.

If you are interested in development of the DiaCeph Test, obtaining a hydrocephalus consult, mHealth consulting, or my speaking at an event, please contact via the information below.

Stephen Dolle
Dolle Communications
Email: contact [at] dollecommunications.com
http://www.dollecommunications.com/
http://www.hydropowered.org

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Drums are Better Therapy than Guns for Mental Health

Drums not guns for brain health

Animal Spirits surround Stephen at this 2010 Drum Circle

Guns vs. Drums: Which is better for your mental health?

 

There’s been another mass shooting in the U.S., and this time at a community college in Oregon. Like so many of the other shooters of these mass shootings, the shooter also suffered from a learning disability and likely related sensory processing disorder (SPD) and mental health issues. But why are these individuals and their families advocating the use of guns and related shooting activities say at gun ranges – as a form of MENTAL HEALTH THERAPY?

Brain health, mental health, and sensory processing disorder will be the biggest challenge of the 21st Century.

But unlike President Obama and so many gun control advocates (and zealots), I see this from a different angle. I see it from the perspective of misguided practices across the U.S. for persons with developmental, learning, and mental health disorders – whose families believe that gun recreation & shooting is the right THERAPY for their brain health challenges.

Now I know a lot about brain health as I have been living with the disorder, hydrocephalus, since a 1992 auto accident, and became a neuroscientist and drum circle facilitator as a result of challenges I and so many others face today. I put on drumming workshops for a wide variety of brain disorders. I see with from a different angle, and I see firsthand how engagement activities can help, or hurt the affected individual.

My heart goes out to the families with children with developmental and mental health disorders as they’ve been looking for activities and outreach for their children for many years. I see the parents’ fear and exhaustion when they bring their adult children to my workshops. But in the case of so many of the mass shootings in the U.S. over the past 20 years, it appears many were carried out by individuals with development or brain health challenges, and it was their parents that got them into gun recreation – thinking it will bring them peace and help them better integrate into society. But, what we’re finding in these shootings, is that they are mis-using the guns to act on “untreated” brain health issues. And in these cases, other activities and therapies need be undertaken.

There is actually a lot of similarities in the sensory and personal qualities of guns vs. drums. In each, it is the vibration and sounds that provides a brain “buzz” of sorts. Both also give the individual an enhanced feeling of importance. But that’s where it ends!

Affected individuals are often drawn to activities like guns, drums, and even auto racing for the sensory “highs” they provide, much like a drug. Parents often feel gun recreation and therapy helps maintain calm, and ward off mental health and SPD meltdowns. But the brains of many of these individuals are often not high functioning enough to know the difference between right vs. wrong –  and with a gun, automobile, or other deadly device, it can be a lethal combination. And the vast majority of affected individuals also face challenges in cognition, sensory processing disorder, and cognitive accessibility. In medical terminology, I would call ill-advised recreation with guns “contraindicated.” And as for alternatives, there are many!

HB Pier Plaza Drum Circle

I have been involved with drumming, or drum circles, for 11 years now, and I put on a variety of drumming workshops for the brain, and with excellent results.

The sound & vibration of the drums effects one’s brain waves, and its group activity qualities allow for team building, leadership, and creative expression. On a therapeutic level, drumming acts as neurofeedback, sensory, and occupational therapy all in one, and helps to normalize associated cognitive, behavioral, and sensory complaints in these disorders.

Drumming for wellness helps seniors and those facing chronic illness

My web site and blog links below detail health science information drumming, basketball, and alternative medicine modalities

Basketball allows participants to feel and move rhythmically with a touch sensitive ball

Drumming for Wellness

What is a Drum Circle

Drumming for the Brain in the Workplace

The Brain Science of Basketball

Alternative Medicine for Addiction and Mental Health Treatment

Cognitive Accessibility

Cognitive Accessibility accommodations er CognitiveAccessibility.org

Again, to me the bigger issue is WHY parents are advocating the use of guns & gun recreation in unstable children with mental health disorders? There are so so many recreational and outreach activities far more ideal for these children, many of whom are now adults.

On a political level, it seems the Obama administration is more concerned with gun control, and the plight of illigal immigrants and refugees from Syria, than the plight of Americans and American families with children with developmental and mental health disorders.

In my view, these shootings are not so much a problem about guns, but a problem about the lack of understanding of mental and developmental health, and how to best care for these individuals as adults. Sixty years ago, many of these shooters might have been institutionalized. We’ve moved away from that, but we’ve failed to modernize our practices. This has been an evolving crisis for many years!

In my addiction blog above, I detail the science of many of these disorders, and share results from many alternative and sensory therapies. In addiction disorders, both mental health and learning disorders often occur together as “dual disorders.” I recently spoke on this new area of brain science at Sovereign Health. I am involved with drumming and drum circles for these disorders, and have seen great results.

Stephen Dolle
Neuroscientist
Dolle Communications

eWeather HD App helps manage Barometric Pressure related Migraine Headache

eWeather HD App for Managing Migraine Screenshot

This blog discusses how to use “barometric pressure” forecasting with the eWeather HD app and data from weather web sites to manage barometric pressure triggers in migraine headache, headache, arthritis, hydrocephalus, Ehlers Danlos, and autoimmune disorders. This blog has considerable self-help information and tips for managing migraine and headaches.

My biggest new discovery comes from a study I undertook in 2017 with the MigraineX ear plugs used in the management of headache, but also in sound suppression. I found that insertion of MigraineX ear plugs before, and even after a harmful sound exposure has occurred, can lessen the associated headache, irritability, cognitive, and SPD complaints by 50% or more. So I carry my MigraineX ear plugs with me all the time to manage sound exposure & associated SPD complaints. They are particularly helpful amid noise from construction, machinery, malls, restaurants, theatre halls, and more. They sell for about $12 on Amazon and many drug stores.

I have also been undertaking new barometric pressure monitoring now with my Samsung phone’s built in barometric pressure sensor. The built in sensor can display sharp short term changes in pressure that weather sites often do not display. Most newer high end smart phones have this sensor built in. But you need to download an app to get the display. For this, I currently use the uBarometer Pro. I have been able to correlate these short pressure changes as triggers of pain and headache.

I also include a brief review of the Migraine Buddy and Headache Diary Pro apps.

eWeather HD was originally introduced as an Android app by Elecont Software, then offered as an IOS app. As IOS came later, there was a delay in IOS weather alerts & notifications. With the eWeather HD Sept. 17, 2017 IOS update, alerts & notifications we’re fixed.

Over the last several years, Elecont has adopted some of my recommendations, which has allowed the eWeather HD app to function more as an mHealth tool in managing pressure aggravated disorders.

I offer FREE eWeather HD Google Promo codes for Android users who email me thru this blog. It is a $4.95 value. iOS versions are less at $2.95 on the Apple Store, and I do not receive download codes.

UPDATES

Sept. 19, 2017 UPDATE:

New Update for eWeather HD app for Apple/IOS Devices including Weather Alerts & Notifications. I am told by Elecont Software that the Sept. 17th 2017 update includes fixes that will allow “Alerts & Notifications” to function on Apple/IOS versions of the app. I had received numerous inquiries here from IOS users, and spoke with the Elecont developer. I am told these features are now available with the app. As I do not personally own an IOS device, I am not able to test this out and provide screenshots. If any IOS users would like to do so and email me the screenshots, I will add them to this IOS installation and user instructions here. SEE blog section here “How to Set up & view eWeatherr HD on IOS Devices.

April 27, 2017 Update includes:
In my April 21st update, I wrote that I thought on-screen or Task-bar Notifications were likely possible on iOS devices, not having seen the app run on an iOS device (of which I don’t own). Then on Tuesday of this week, I attended an iOS developer event to deliver a demo on the eWeather HD app. There I was able to explore the app as it appears on iOS devices, and learned why it does NOT get Alerts or On-screen Notifications. It has to do with Apple’s “Apple Push Notification” service, or APNs, for network notifications on iOS devices. My apologies for not understanding this issue sooner. I will be speaking to the developer Elecont as to fixes for this issue. I explain in more detail how the iOS version of the app is used in my section below on eWeather HD for iOS Devices.

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April 21, 2017 update includes:
1. eWeather HD Barometric Pressure screenshots showing the “Notifications” I use on my Android GS3 phone in managing my headaches. NOTE: I do not use the audible alert option. From my experience, audible alerts might only be necessary in users with visual impairment who are unable to view home page Notifications. As I do not own an IOS device, I am uncertain of the specific screen Notifications available on IOS versions. However, I will encourage the developer to make my recommendations here as standard options available on all their versions.
2. Discussion of Barometric Pressure Notifications currently available for IOS versions of the eWeather HD app. SEE my discussion in the IOS section.

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Jan. 11, 2017 update included:
1. How to select notifications & alerts for changes in barometric pressure related to migraine headache, with screenshots, and
2. My personal preferences for barometric pressure indicators on my eWeather app

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Oct. 19, 2016 update included:
1. Screenshots and new instructions on installing the app from Google Promo codes.
2. Discussion and review of several top migraine apps.
3. Discussion and links from new Excedrin migraine and weather information.
4. Updated information on the role that sound/noise and sensory processing disorder (SPD) plays in migraine headache.

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Management of Migraine and Headache thru Weather Monitoring

Migraine headache can get you out of your routine

Weather changes with a sharp drop in barometric pressure can often trigger a migraine headache in pressure sensitive individuals with a history of neurological disorders such as hydrocephalus, post tumor, Parkinson’s Disease, PTSD, sensory processing disorder or SPD, and person’s with a history of anxiety attacks and migraine. The sharp drop in barometric pressure during weather change often acts as a trigger of migraine. Weather apps and web sites can provide advanced warnings of changes in barometric pressure, so affected individuals can adjust their activities and medications. I’ve found the eWeather HD app to be the most convenient as it forecasts barometric pressure both 24 hours ahead, and the past 24 hours, in a easy to read graphic format. The app highlights steep rising and falling of barometric pressure, and can alert you via its icon on the taskbar of your phone.

I am a migraine sufferer today as a result of 24 years and 12 CNS shunt surgeries for hydrocephalus. In this blog, I discuss a real migraine headache event, and how I used the eWeather HD to help me better through it. Had it not been for the Elecont eWeather app, I likely would have been down for the entire afternoon. And as of May 2016, I give away Google Promo codes from the eWeather HD app developer for a FREE app download for Android devices, a $4.95 value. To obtain a Google Promo code, email me your request to the address at bottom.

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Stephen Dolle in Knots of Love Bennie for persons who have underwent brain surgery or chemotherapy.

My name is Stephen Dolle and I am a neuroscientist and author of this blog. I write and consult on mHealth, brain health, and the disorder hydrocephalus. I also live with hydrocephalus, and regularly suffer migraines, and have been an eWeather HD app user since 2012.

My mHealth app experience spans a 1997 design of an application for hydrocephalus (DiaCeph Test) to run on a PDA, which unfortunately I was not able to get funding for. However, I continue to provide a number of FREE monitoring forms and instructions so individuals and families can do their own monitoring. Since 2009, I’ve been providing Hydrocephalus Monitoring & Consults to patients affected by hydrocephalus (link to blog & services is below). I am also a CNS shunt device scientist. I can also provide consults to mobile app developers and others wishing to develop mHealth apps. My DiaCeph Test today could be made into a mobile data app with sufficient funding and/or partners.

Hydrocephalus Monitoring & Consults

Since 2012, I’ve also been applying my mHealth expertise to migraine care and weather monitoring of migraine headaches using both weather apps and web sites. I have also evaluated mobile apps for pain management monitoring. Since 2014, I found the eWeather HD app the best mobile app tool for monitoring barometric pressure weather triggers, and in 2016 I reached out to the developer for free downloads to give away to my blog followers. Migraine headaches are also very common in hydrocephalus, which I have been living with since 1992. So these eWeather HD efforts also benefit my own health.

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Drum circles help to reduce stress and stimulate the brain for optimal function in the workplace

I also put on drum circles in Orange County, California, as a therapy for medical conditions, and for events, icebreakers, and organizations interested in team-building (like drumming in the workplace pictured above). Medical conditions and organizations I’ve helped include: National Hydrocephalus Foundation, National Parkinson’s Foundation, cerebral palsy/autism, drug & alcohol addiction, Alzheimer’s disease, movement disorders, sensory processing disorder (SPD), schizophrenia, weight loss, and general health & wellness. I also write blogs on drumming and movement topics, including, drumming for basketball and football. Drumming can improve one’s intolerance to sound and stress, which are common triggers of migraine headache, and stress also plays a key role in sensitivity to noise in sensory processing disorder (SPD). Drumming, exercises, and yoga also help offset cerebral hypotension, the mechanism most often responsible for migraine headache. My blogs below detail how drumming aids wellness, stress reduction, and migraine disorders.

Drumming for Workplace Wellness

Drumming Therapy in Cerebral Palsy and Autism

Stephen Dolle facilitates a drumming for wellness workshop at a private home in Orange County

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eWeather HD Weather Images of Hurricane Irma (Sept. 2017)

I have added some eWeather HD screenshots taken of Hurricane Irma that struck Florida in September 2017. From California, I was able to get forecasts and share weather information with friends in Florida affected by Hurricane Irma. The radar images & pressure graphs are striking. The primary limitation of must weather apps and web pages is that their radar is based on land, and it can only scan out over the water about 100Km. So you have to either get NASA satellite images, or wait for the storm to be within 100Km of the mainland. Enjoy my pics.

Image shows Hurricane Irma as a massive storm covering most of the state of Florida.

Note the steep drop in the forecasted barometric pressure for Tampa, Florida, indicating the severity of the storm & timeline of its arrival over Tampa.

Radar image shows Hurricane Irma passing over Tampa, Florida, where the rear portion of the eye has weakened – thankfully leading to much less damage for Tampa.

Radar Image shows Hurricane Irma as a massive storm over Florida with many different local & regional weather alerts.

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How to Use the eWeather HD App for Management of Migraine & Headache

The Elecont eWeather HD app is an excellent mHealth tool & mobile app for managing migraine headache. I have been using the app since about 2012, while also using several online weather sites. As Elecont made updates to its app, by 2014 it became my weather site/app of choice.

The app provides up to 24-hour advance display of changes in barometric pressure, which you can use to help manage your migraines and headaches. Knowing this weather data in advance, can allow you to make key changes in your schedule, medication, exercise, and hydration to possibly head off a migraine attack. Moderating exercise, hydration, and medication other tips is discussed further in this blog.

This section’s screenshots are from the app on my Android device. There are some differences with the iOS version, specifically, with Alerts & Notifications not yet being available. In my UPDATES at top, and here in my discussion sections, I detail how you can use the app on both Android & iOS platforms.

For Android devices, you have (3) ALERT options for how you get notified of changes in barometric pressure. Below are the Android screenshots for setting up ALERTS in the eWeather HD program. (For Apple/iTunes devices, you can view changes in pressure via the red-alerted barometric pressure graph in the app, and via display of the pressure graph icon on your phone’s taskbar & widget if set up).

1. VIEW GRAPHS: View the graphs by clicking on the app or widget on your home screen. The program is configured by default to turn the barometric pressure graph “red” when there is a rise or fall of more than 0.20 Hg (I think). The default graph will look like the graph in the screenshot just further below. This shows the pressure for the last 24hr in Hg. The far right edge of the graph is current time, and the far left edge of the graph represents 24hr earlier. To see the next 24hr forecast, press the tiny round red “in” button in the top right corner of the screen. Press it again, and it returns to the current 24hr graph. Scroll the screen to the “right” to see an hourly all weather forecast, and scroll to the right again to see the 10 day weather forecast. Scroll again and it comes back to the home screen.
2. VIEW ICON: View the pressure graph “icon” in either the notifications bar on the top of your phone’s screen, or in the lower right corner of Elecont 2×2 widget screen. I have both set up. The icon is a tiny display of the graph. When the pressure is substantially rising or falling, it will turn to red and be sloped accordingly.

The screenshot below is the default view on the opening screen of the eWeather HD app on Android devices. eWeather HD App panel displays a forecast graph of the previous, current, and next 24 hour period of barometric pressure.

The eWeather HD Android app Barometric Pressure Graph includes Current, past 24 Hours, and next 24 Hours, the data of which is a useful Health Monitoring Tool for Migraines, Headaches, Arthritis, and other Medical Disorders.

USE OF NOTIFICATIONS/ALERTS: You have the option to receive an “audible alert” or “notification icon” when the change in barometric pressure exceeds the pre-set range within the app.
I personally do not use the audible alerts. Also, I am told audible alerts are not yet available in IOS versions. I personally use the notification icons available in three (3) places on my Android phone, which I identify below & share via screenshot:
1) Icon in lower right corner of 2×2 widget on my home screen;

Since I took the home screen screenshot below, I revised the “widget” display, weather data, and colors on my Android phone. I’ll share a new screenshot on my next update.
2) Task bar Icon at the top of my home screen;
3) List of Icons for eWeather HD & other phone functions on the Task Bar (top of phone home screen). The barometric pressure Notifications turn red when there is significant change in current, past 24 hours, or forcasted pressure. The colored Icon is readily seen on the screen. Users with visual impairment may require the app’s audible alerts. In addition, several times a day I click on the eWeather HD app widget, where a large view of the barometric pressure graph appears. Click on the “in” button in the top right corner, and the graph alternates between U.S. Provider & Foreca.com pressure graphs.

eWeather HD Android app home screen Icon Notifications of Barometric Pressure Graph, which is a helpful tool in Health Monitoring of Migraines, Headaches, Arthritis, and other Medical Disorders.

The eWeather HD Android app features multiple Task Bar Icon Notifications, including, of Barometric Pressure which is a helpful in Monitoring Migraine, Headache, Arthritis, and other Medical Disorders.

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To set up customizable icon & audible alert notifications in the eWeather HD app, go to the OPTIONS panel. Press the “open menu” button on your phone within the eWeather HD app and scroll down to “options” near the bottom of the list. This is where you set up weather and barometric pressure alert information for both your task bar & home screen widget. First, select the “Alerts” option near the top of the options panel (not pictured in the screenshot below as it’s a long panel).

UI Panel options in the eWeather HD App.

Click on the “Alerts” option near the top of the panel, and check the boxes like in the screenshot below.

eWeather HD App options panel to set up alerts

Next, go to the main OPTIONS panel and select the “Status Bar Notification” in the lower portion of the panel. Select “Pressure Changes” like in the next screen.

eWeather HD App options panel status bar notification

Then check the appropriate boxes under “Pressure Changes” and select whether you want to receive an “audible notification” like in the screen below.

eWeather HD App options panel option to select pressure changes

This concludes set up of alerts & notifications for Android devices. For help with the eWeather app widget, see “frequently asked questions” section under “About” on the OPTIONS panel.

To obtain a Google Promo code for a FREE download of the eWeather HD app for Android on Google Play, email your request to the address at bottom.

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How to set up & View eWeather HD app on IOS Devices

New Sept. 17, 2017 Update for eWeather HD app for Apple/IOS Devices:

In this update, the Weather Alerts & Notifications feature that had not previously been operable, I am told is now available. After numerous inquiries here from IOS users, I spoke with the Elecont developer. So these features are now apparently available within the IOS versions of the app. I do not personally own an IOS device, so I am not able to test it out or provide screenshots. But if any IOS users would like to do so, leave a comment on your experience with this, and also include if you took screenshots – email them to me. And I will add them to the IOS installation and user instructions here.

While most of the eWeather HD app features and displays are quite identical on Android and IOS devices, audible Alerts & Task-bar (on-screen) Notifications were not previously available on iOS devices. I attended an iOS developer event and was able to see and understand the iOS issues with the app. The alerts & on-screen notifications had to do with Apple’s “Apple Push Notification” service, or APNs, which is the centerpiece of their network notifications, and involves additional security coding that has not yet been submitted for the iOS version. Apple has very strict requirements with their platform. Comparatively, on Android devices, I believe notifications & alerts are more “locally controlled” on the device and do not require the network security features. So, I encourage IOS users to get this most recent Sept. 17, 2017 update and explore the new alerts & notifications functionality.
As I have stated repeatedly, I do NOT use the AUDIBLE alert feature for barometric pressure changes on my Android device. I watch the on screen widget & visual icon on the top of my phone’s task bar. When a rapid rise or fall in pressure is predicted or already occurring, both the visual alerts and the barometric pressure graph turn RED. When I see this, I open up the app and study the graph. If you have been using the app – then you likely know what types of rise/fall in the graph will trigger a specific level of headache or other complaint your tracking with the app. As always, there are other contributing health factors that can worsen or less a migraine or headache. Your personal user experience becomes an invaluable part of your preparation and management of complaints triggered by the changes in barometric pressure.
You can purchase iOS versions of the eWeather HD app via the links below:

Purchase eWeather HD app for IOS devices at the Apple/iTunes store, follow the links, installation screenshots, and link to Elecont’s customer support page:
Apple iTunes Store: eWeather HD App
Elecont eWeather “Customer Support” page for Apple iTunes Installation
As of my update on 9.19.17, the developer had not updated the above forum page on the addition of Alerts & Notifications – and I asked that they do so.
Below are Task Bar & Widget Notifications available on my own Android device. I do not use the audible alerts as I explain below.
Notification icons that I personally use on my own Android phone include (SEE my screenshots of this in my above Android discussion):
1) Icon in lower right corner of 2×2 widget on my home screen;
2) Task bar Icon at the top of my home screen;
3) List of Icons for eWeather HD & other phone functions on the Task Bar (top of phone home screen). Barometric pressure Notifications turn red when there is significant change in barometric pressure. The colored Icon can readily be seen on the screen. Users with visual impairment may require audible alerts. In addition, several times a day I click on the eWeather HD app widget to view the barometric pressure graph. Clicking on the “in” button in the top right corner allows the graph to alternate between U.S. Provider & Foreca.com.

When task bar icons notifications become available in the IOS version, I suspect it will be set up from within the OPTIONS panel, very similar to how it is on Android. On Android, you press the “open menu” button within the eWeather HD app, and scroll down to “options.” Next you look for the option called “Notifications,” and then select the weather data you’d like displayed in on-screen notifications. Again I only use Task Bar Notifications, plus a home screen Widget with Icons I selected from within the options panel.
I will post new UPDATES on this ALERTS & NOTIFICATIONS iOS issue at the top of this blog, as well as discussions here, on fixes for alerts & notifications. The program screenshots below were kindly shared by an IOS device user. The app has the same features as the Android version, except for the Alerts & Notifications. iOS users must manually open the app to monitor BAROMETRIC PRESSURE changes.

Elecont eWeather for iPhone.pressure screenshot1

Elecont eWeather for iPhone.pressure screenshot2

Elecont eWeather for iPhone.pressure screenshot3

And here’s the eWeather Apple app screenshot of its barometric pressure graph once the app is installed and operational.

Elecont eWeather for iPhone.pressure graph

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My eWeather HD App Migraine/Headache Case Study

Below, is my own eWeather App case information from an episode in 2015 that forced me to stop working, lay down, take medication, and engage the eWeather HD app as an mHealth tool to salvage my day.

And as I lay down with shades drawn, I clicked on the widget of my Elecont eWeather HD app, where I could see I was in the midst of a very sharp fall in barometric pressure (screen image below). The app showed a “9 pt. drop” in only an hour – which is a very significant drop. It is the “rapid drop” in barometric pressure that is the most common trigger of migraine headache, next to stress.

My next step was to perform a valsalva (breath pressure) maneuver – which I use in my hydrocephalus and migraine care, to test my response to a temporary increase in brain blood pressure (BP) and intracranial pressure (ICP). If you’re experiencing a (hypotension) migraine from rapidly falling barometric pressure, often times valsalva maneuvers and changes in posture (up & down) over a 20 minute period, can provide some relief.

To do a valsalva maneuver, simply hold your breath for a few seconds while straining as though you were lifting something. Then note the change in your headache during the maneuver. If it feels relieving, that suggests your headache is due to low pressure or a “cerebral hypotension” brain state. If there is no change, that would suggests either your headache is unrelated to weather pressure, or your pressure is so low that the valsalva did not counter your low pressure enough. If your headache worsens with this valsalva straining, that would suggests hypertension & elevated BP and/or ICP, and you should discontinue any further straining maneuvers.

With my migraine on that day, I got headache relief almost immediately from the valsalva pressure maneuver, and continued to perform these low pressure offsetting maneuvers. As I’ve used the app for several years, I knew today’s drop in pressure was unusual and steep. The eWeather App also changes the color of the graph to “red” during a steep rise or fall in barometric pressure. I put 2+2 together, and I concluded the sudden drop in pressure was likely the cause of my migraine headache.

I stayed supine for almost an hour, while continuing to perform 2-3 valsalva maneuvers each 10-15 minutes. Within 30-45 minutes, I was feeling like new! I also soon observed the barometric pressure to level off on my app’s display. Below is my screen image:

The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.

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Weather Web Sites

Weather web sites also offer some barometric pressure information. Prior to the Elecont HD weather app, I primarily used two online weather sites. Weather Underground lists barometric pressure forecast data, but only 6 hours of forecast data the last time I looked.

Two weather web sites I used in the past include Weather Underground and Weather For You. For these, you need to put in your zip code or city to view the weather panel for your area. They list a table and graph options for weather data. Weather Underground gives 6 hour forecasts ahead on barometric pressure.

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The Medical Science of Migraine Headaches

Migraine headaches are typically due to cerebral hypotension, where blood vessels in the brain become dilated, resulting in low blood pressure in the brain, and then headache. During weather change, a sudden falling of barometric pressure can leave you further vulnerable to cerebral hypotension. And it is the rapidly falling barometric pressure that is often the trigger of a migraine. Menstruation, and its associated blood loss, can also contribute/help trigger cerebral hypotension and migraine.

Knowing the cause of your migraine will help you best treat it. In the case of my migraine on this day, it was the sudden drop in barometric pressure that induced my headache. My quick assessment of its cause, then allowed me to undertake swift intervention.
Valsalva maneuvers and laying down preferably in a dark or quiet room, is a common treatment in migraine. But some may also need medication. You should keep watch on the barometric pressure during a migraine to confirm that it is stabilizing.

This illustration shows how nerve fibers become inflammed during a migraine.

Weather related headaches affect some 15% or more of the world’s population. Migraine is also common in the disorder, hydrocephalus. Migraine headaches are also passed on thru family genetics.

Much has been written about the connection between weather and migraine headache. The popular over the counter medicine, Excedrin, combines aspirin or Tylenol with caffeine (a vasoconstrictor) to offset dilated blood vessels (cerebral hypotension) which is the most common scientific explanation for migraine headache. Excedrin helps both with pain and constricting of the dilated blood vessels. For this reason, Excedrin is uniquely helpful in the treatment of weather related migraine. Below, is a web page Excedrin has published on the weather-migraine connection.

CAN WEATHER CHANGES CAUSE A MIGRAINE? (Excedrin.com)

Excedrin is used to help manage pain associated with migraine headache.

The Mayo Clinic hosts a nice web site section on migraine:

Migraine information at the MayoClinic.com

The Mayo Clinic web site offers an easy to understand interface & wealth of reliable health and medical information.

Self Care of Migraine Headache

Learning to use mHealth Apps to manage illness.

Smithsonian Magazine: Can This App Predict Your Headache?

The above Smithsonian Magazine article primarily discusses the feasibility of whether the Migraine Buddy app can predict migraine headache. For more on this, SEE my review and comparison of the Migraine Buddy app and Headache Diary Pro and how each can integrate with the eWeather HD app further below.

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I have written much about how to use mHealth apps, home treatment, and prevention of medical disorders. And migraine can be better managed by following my tips in this section.

One simple technique is to have a cup of coffee or tea right before onset of a migraine. Caffeine acts to constrict dilated blood vessels in the brain, and can also be used prophylacticly head off an onset of migraine and cerebral hypotension – before a big headache strikes. Similarly, exercises like yoga, which involve frequent changes in posture (eg. standing to lying down), can can help to normalize cerebral hypotension and your brain’s ill-fated response to falling barometric pressure.

Drinking 2-4 glasses of water can help treat migraine headache.

Another more pragmatic remedy that helps me is rapid hydration with water (two to four 12 oz. glasses) over a 15-30 minute interval at first onset of symptoms. The water helps raise blood pressure (BP) and infuse fresh blood and nutrients into the brain. Other remedies include changing postures from standing to laying down over 30 sec to 2 minute intervals, and light exercise with short interval BP surges. This helps to flex the tiny blood vessels in the brain most responsible for migraine. Regular exercise also improves your intolerance to cerebral hypotension. PRECAUTION: Should you suffer from high blood pressure or heart disease – you should consult with your doctor before doing these physical exertion exercises.

Once a migraine event has begun, it is recommended you lay down supine for at least 15-20 minutes to raise your brain’s blood pressure and help offset the hypotensive state.

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Loud/monotonous sounds, stress, other illness, and poor sleep can also leave you more susceptible to migraines. Many migraine sufferers also suffer from SPD or “sensory processing disorder,” and become overly sensitive to loud ertatic sounds. It’s important during a migraine, to remove yourself from sources of light, sound, and commotion as best you can, as it helps calm the brain. The following is a detailed blog I’ve authored on sensory processing disorder:

New Insights in Management of Sensory Processing Disorder (SPD)

Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF

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Women during menstruation are also more susceptable to migraine from the slight blood loss causing a hypotensive state. Coupled with a drop in barometric pressure, if you are a woman common to this syndrome, menstruation and barometric pressure drop can send you into a full migraine crisis. To offset this, you should drink extra fluids during menstruation.

Migraine sufferers should also limit intake of alcohol, as this can lead to dehydration, and alteration of brain neurotransmitters. Also limit foods with high fat and sugar content as this compromises healthy circulation in the brain. You will likely see a noticeable difference in frequency and severity of your migraines just by altering your intake of alcohol, fat, and sugars.

To help reduce sensitivity to changes in barometric pressure, regular exercise like yoga can help brain compliance and cerebral blood flow. Breath work and meditation also help improve blood flow in the brain, and your stress response. Drumming is an excellent exercise as it also reduces stress. Weight lifting, sports, walking, and all exercise helps improve blood flow in the brain, that can offset migraines. Below, the Mayo Clinic web site offers some info on migraine.

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For many migraine sufferers, weather related triggers pose regular challenges. Here I personally have found the eWeather HP app to be an excellent mHealth tool for alerting you of coming changes in barometric pressure. Managing migraine, and its many different causes, can be a complex health challenge. So you should be discussing the eWeather HP app and other details ith your doctor.

My initial blog on weather monitoring for migraine was in 2014. In that blog, I shared my experiences on the use of weather web sites and the eWeather app. But the eWeather Elecont app has become the best tool for managing weather induced migraine headache.

With the condition hydrocephalus, which I live with, a headache during rising pressure could also indicate an early sign of shunt malfunction, signal an improperly programmed CNS shunt, or be a sign you’re not yet stable following shunting or ETV. As a significant headache [during high barometric pressure] could indicate “shunt malfunction,” you should take this up with your doctor.

The eWeather HD App can be used to help manage migraine headache associated with a number of neurological disorders.

How to obtain your FREE Android eWeather HD Google Promo Code

The Google Promo code for the Elecont eWeather HD App is a $4.99 value. Per the developer, no free downloads are available for Apple devices. I strongly encourage you READ my entire blog after downloading the eWeather HD app.
To obtain your FREE Google Promo code, email me at contact [at] dollecommunications [dot] com – I will email you back your code, usually within a couple hours, but almost always within 24 hours.

How to Install your eWeather HD Google Promo Code

1. Once you’ve obtained your “Google Promo code,” go to the Google Play store and search for eWeather HD app (or similarly follow the link in my email). I’ve heard mixed feedback as to whether you SHOULD or SHOULD NOT be signed in.
2. Next click and open up the app – and you should see a panel as in STEP1 below. Click on INSTALL.
3. You should now be given the option to buy with a Google Promo code. Do not select BUY if you’re signed in as the $4.99 might be billed to your Google account. You need to be at the REDEEM YOUR CODE panel as seen in STEP2 below. For some users, you may need to sign out of Google Play store in order to see the REDEEM YOUR CODE panel.
4. Next, enter the Google Promo code I emailed you and select REDEEM. Then select ACCEPT. You should immediately see the app installing.

eWeather HD android installation with Google Promo code Step1

eWeather HD android installation with Google Promo code Step2

eWeather HD android installation with Google Promo code Step3

eWeather HD android installation with Google Promo code Step4

eWeather HD android installation with Google Promo code Step5

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Purchase the eWeather HD app for Android devices directly at the Android store, follow this link:
Android Play Store: eWeather HD App

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Purchase the eWeather HD app for IOS devices at the Apple/iTunes store, follow these links – plus SEE installation screenshots and link below to Elecont’s customer support page:
Apple iTunes Store: eWeather HD App
Elecont eWeather “Customer Support” page for Apple iTunes Installation

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Android Mobile Apps for the Home Care of Migraines & Headache

This section compares two leading Android mobile “migraine” apps I have used for home care of migraine headache, and can offer my insights. These apps would need to be used in addition to the eWeather HD app as neither provides any monitoring or alerts on changes in barometric pressure. Headache Diary Pro vs Migraine Buddy. I use the “pro” version of Headache Diary, and the “free” and only version of Migraine Buddy. They are nearly identical in application, but differ in their UI panel and usability. Where Headache Diary Pro provides all the necessary monitoring and migraine reports, Migraine Buddy charges a monthly or yearly subscription for their reports. I find the Migraine Buddy a more detailed and user friendly program. But you would need to have a significant migraine problem to spend $9 per month or $90 per year.

My recommendation as to your individual use of the eWeather HD and above apps is based on the severity of your migraine issue as to the degree that it impairs your quality of life. That should determine how much time and money you may want to spend on these.
eWeather HD app: If you are certain that your migraines are often triggered by changes in weather, then this app is a must for you. You may also want to download one of the migraine apps if your condition poses significant to quality of life. The eWeather HD app is not too difficult and time consuming to set up. And it offers many other weather features such as 10-day weather forecasts, live radar, weather alerts, and earthquake alerts, to name a few.
Headache Diary Pro: I have used this app for several years and find it very adequate for recording and storing migraine data to later print out when you see your doctor. It’s fairly simple to use. And I don’t believe there are any other additional costs to use.
Migraine Buddy: The Migraine Buddy is perhaps the newest mHealth design of any of the migraine apps I’ve looked at. I downloaded it today and ran it thru a trial headache event. While I favor its UI interface over the other migraine apps, I am not willing to pay a monthly or year subscription fee to get the results. This is a decision only each of you can make as to how migraine affects your quality of life, and what you are willing to do to possible better manage it.

If money weren’t an issue, I’d likely choose Migraine Buddy. But be forewarned, the Migraine Buddy and Headache diary Pro (and likely all migraine apps) require a significant investment of time. If you suffer daily headaches from hydrocephalus as I do, one of these two apps can be helpful. But, the more time and thought you give to your headaches, the more they seem to take up space in your mind. This goes the same for pain and pain management too. Below is the Manage My Pain Pro app I have tried and found helpful for pain management, though time consuming.

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Mobile Health Apps for Hydrocephalus

Living with Hydrocephalus for most means the implanting of a CNS Shunt as Illustrated here.

As I have written about the use of mobile apps for migraine headache, I wanted to also share some more specific applications I’ve written about for persons with hydrocephalus. Two of the most common apps I use (Metal/EMF Detector, Decibel Meter) can be found on the Smart Tools web site. I’ve used these apps for several years and find them helpful in managing hydrocephalus and SPD related complaints. I also now have a special blog of apps and tips for living with hydrocephalus below.

DolleCommunications Blog of Apps & Tips for Hydrocephalus

Smart Tools Page on the Android Play Store

Smart Tools Apps on the iTunes Apple Store

Metal Detector – This EMF app is handy for measuring magnetic fields in your surroundings from various electronic devices & household appliances should you have a programmable CNS shunt for hydrocephalus. I personally have used the Smart Tools Metal Detector for 4 years and find it accurate and helpful.
Sound Meter – Decibeter meter apps measure the loudness of sound around you should you be sensitive to sounds as a result of hydrocephalus, autism, and other disorders that often lead to sensory processing disorder, or SPD. I personally use the Smart Tools decibel meter app and find it accurate and helpful.

Chosing the right mHealth App can be confusing.

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List of Apps & Web Sites Discussed in this Blog

Android Play Store Elecont HD Weather App link
Apple iTunes Store Elecont HD Weather App link
Smart Tools Page on the Android Play Store
Smart Tools Apps on the iTunes Apple Store
Earlier March 2014 Blog on Weather & Migraine
Weather Underground
Weather For You web site
Drumming for Workplace Wellness
Drumming Therapy in Cerebral Palsy and Autism
Mayo Clinic – Migraine Answers
Mayo Clinic – Migraine Headache

Shunt Monitoring and Consults for NPH & Hydrocephalus
DolleCommunications Blog of Apps & Tips for Hydrocephalus

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I hope you’ve enjoyed this blog and found health tips to help in managing your migraines. If I can be of any specific help in mHealth design, use of these apps, hydrocephalus care & monitoring, drum circles for wellness and brain health, or speaking on these topics, please contact me via the information below.

Please also email me for a Google Promo code for a FREE download of eWeather HD for Android devices (Google Play store).
Stephen Dolle
Email: contact[at]dollecommunications[dot]com
Dolle Communications

Mobile Apps and Patient Tools for Living with Hydrocephalus

This blog discusses mHealth mobile phone apps and accommodations for living with hydrocephalus.

I initially wrote this in 2015 under the title “Spread Awareness of Hydrocephalus on Rare Disease Day.” But then following several large updates of content, on April 18, 2016, I changed the title to “Mobile Apps and Accommodations for Living with Hydrocephalus,” which I feel more aply represents its content now. I discuss many of the everyday challenges faced by persons living with hydrocephalus, and discuss my experiences with specific mHealth mobile apps and accommodations-solutions needed for everyday living.
Hydrocephalus is a neurological disorder where CSF (cerebral spinal fluid) is not sufficiently cleared from within and around the surface of the brain – from a variety of etiologies. The fluid then abnormally collects in the brain’s ventricle compartment thereby exerting abnormal and often dangerous pressures on critical structures of the brain. It is normal to have CSF in the brain, as it is produced in the choroid plexus at a rate of about 20cc per hour. It’s primary purpose is in regulatiion of blood pressure (BP) and intracranial pressure (ICP). It also circulates up & down the spine and helps to circulate needed nutrients throughout the brain. Hydrocephalus then develops when the brain is not able to clear CSF fluid at the same rate it is produced, more often resulting in swelling of the ventricles – except in NPH, or normal pressure hydrocephalus, where there may be limited or no swelling, and normal amounts of pressure.
Hydrocephalus occurs in utero and shortly after birth in 1 of every 1000 births. It also occurs in children from cysts and tumors, and somewhat also in adults. It occurs post trauma through subarachnoid bleeding, and idiopathicly, or naturally, from anatomical malformations of the brain and brain-stem, and from aging. Its overall prevalence in the U.S. is estimated at about 40,000 to 50,000 new cases each year. But due to its broad spectrum of causes or etiologies, hydrocephalus has been accepted into the rare diseases database. Many scientists continue to refer to hydrocephalus as a rare disease because of its association with genetic birth defects. The illustration below identifies where CSF is produced and circulated within the brain.

Brain Diagram of Ventricles often Enlarged in Hydrocephalus

DolleCommunications is my neurosciences blog I launched in 2010 after becoming affected by hydrocephalus following a 1992 auto accident and concussion. The photo of me below was taken in 1998 after one of the shunt surgeries where I had used my newly developed DiaCeph Test mHealth method to help direct replacement of the needed medical device components on my CNS shunt system.

Stephen Dolle invented his DiaCeph Test following his 1996 FDA petition, which was then used to direct this 1998 shunt surgery

A CNS (central nervous system) shunt is the most common form of treatment for hydrocephalus. It is a two or three piece catheter with a one-way pressure valve that more often drains into the abdomen, or peritoneum, where it is termed a VP shunt. Alternately, it can drain into the heart (VA shunt), or draw fluid off the spinal canal into the abdomen (LP shunt). Over the last 20 years, a newer surgical procedure, a 3rd ventriculostomy, has been developed where a small opening is made in one of the ventricles (usually the 3rd), which if successful, allows for proper circulation and clearance around a an aqueduct blockage and can negate dependance on a CNS shunt. Only 10-15 percent of those with hydrocephalus will benefit from this procedure.

Great pic NHF members affected by hydrocephalus at a 2015 Orange County fundraiser.

It is common knowledge today that shunt technology is in need of modernization. Present day treatment outcomes (esp. with CNS shunts) often leave individuals with significant quality of life challenges with no shunt diagnostics to provide early warning shunt malfunction or accidental reprogramming, which is all to common and can result in brain damage and/or blindness. Since my onset in 1992, I’ve undergone 12 shunt revisions.
Living with hydrocephalus and especially a CNS shunt presents a number of key challenges, most notably, shunt malfunctions and corrective surgery, but also frequent headaches, cognitive and memory difficulties, challenges with balance and hand/eye coordination, and difficulty adapting to a noisy and complex world where the necessary accommodations are widely unavailable today. I discuss some of the challenges and much needed accommodaitons for hydrocephalus further below.

Shunt Illustration for Hydrocephalus

I became involved as an FDA patient advocate and inventor in hydrocephalus several years after my onset of hydrocephalus. As a patient advocate, I authored a critical 1996 citizen’s petition to the Food and Drug Administration (FDA), plus made recommendations at the 1999 STAMP Conference in Bethesda MD. I’ve also written FDA position papers and recommendations for the oversight of shunt technology, and spoke at the 1999 STAMP Conference in Bethesda, Maryland.

Stephen Dolle in Washington, D.C. for the FDA’s Hydrocephalus STAMP Conference in 1999.

After writing my FDA petition on CNS anti-siphon shunts in 1996, my research led me to design and patent a non-invasive monitoring system for hydrocephalus, I named the DiaCeph Test. It initially was to run on a PDA. But I could not raise the necessary funding to make it. The DiaCeph Test today could be made into a mobile phone data and text app. Most of the development costs today is still from burdensome FDA guidance on mHealth apps. If it were available, it would revolutionize the care of hydrocephalus.

The DiaCeph App Creative Brief details its design and unique features in monitoring of the disorder hydrocephalus

DiaCeph Test could be Mobile Phone App

In 2009, after many years of patient advocacy and answering inquiries from affected patients, I began offering patient consults for a fee. Most of my patients have been those affected by complex hydrocephalus, and with unresolved challenges. Unresolved complaints and unsatisfactory outcomes are common in hydrocephalus – as high as 70 percent of all patients with hydrocephalus.

I am also very involved with weather apps and barometric pressure monitoring. A link to my primary blog on this is listed further below.

My biggest new discovery in this space comes from a study I undertook in 2017 with the MigraineX ear plugs used in the management of headache, but also in sound suppression. I found that insertion of MigraineX ear plugs before, and even after a harmful sound exposure has occurred, can lessen the associated headache, irritability, cognitive, and SPD complaints by 50% or more. So I carry my MigraineX ear plugs with me all the time to manage sound exposure & associated SPD complaints. They are particularly helpful amid noise from construction, machinery, malls, restaurants, theatre halls, and more. They sell for about $12 on Amazon and at many drug stores.

I have also been undertaking barometric pressure monitoring now with my Samsung phone’s built in barometric pressure sensor. The built in sensor can display sharp short term changes in pressure that weather sites & apps do not display. Most newer high end smart phones have this sensor built in. But you need an app to get the display. For this, I currently use uBarometer Pro. I have been able to correlate these short pressure changes as triggers of pain and headache.

The web link (web page) below describes how to obtain a consult for hydrocephalus, shunt monitoring, and mHealth monitoring with custom apps, and DiaCeph forms and user instructions.

Hydrocephalus & Shunt Monitoring Consults

Prosperity is based on sound information.

In 2004, I became involved in drum circles after earlier playing piano, vocal work, and some stage & film. I initially used piano as a form of therapy for my challenges, then later guitar, then in 2004 percussion. I immediately realized a call to become more involved in drumming, and I began to take classes, and eventually help put on drum circle events. Today, I am very involved in drum circles and drumming for the brain & wellness and for disorders like hydrocephalus.

Drumming Therapies for Wellness and Neurological Disorders

On Sept. 24th, 2015, I held two drumming workshops at the 2015 NHF Patient Power Conference in Anaheim, CA. My methods help with others with balance, coordination, cognition, and communications challenges. SEE info in the flyer below.

Seniors came alive in this 2010 drum circle for wellness and movement.

Drumming workshop for balance and movement challenges in living with hydrocephalus

One of the more problematic challenges with hydrocephalus, and most neurological disorders, is with cognitive accessibility and it’s related sensory processing disorder, or SPD. These challenges are often disabiling and occur in hydrocephalus and neurological and learning disorders such as autism, ADHD, PTSD, Parkinson’s, stroke, post tumor, addiction, and even migraine. I have written about both fairly extensively. And own the domain CognitiveAccessibility.org – which I am yet to host a web site. I currently have it pointing to a supporting temporary page on my main web site.

CognitiveAccessibility.org

CognitiveAccessibility.org

COGNITIVE ACCESSIBILITY describes the array of accommodations and protections needed today by affected individuals. Without these protections, cognitive dysfunction and often one’s mental health state are easily exacerbated (made worse) by exposure and stress of unhealthful cognitive triggers. In fact, today there is a large lawsuit brought by families with autism against Disney World for failing to offer cognitive disability access to park rides. The science is real. I’ve experienced thousands of first hand accounts.

Common cognitive triggers include loud TV & radio commercials, loud helter skelter music, noisy construction equipment and machinery, bright lights, and powerful odors. When these triggers are present and not managed properly in public places, they restrict access by persons susceptable to it. Today we know that mental health and physical brain changes go hand in hand, meaning, one affects the other. This next blog describes many of the key sensory challenges in sensory processing disorder (SPD) and sensory challenges in hydrocephalus, and related disorders. Below, is also a recent diagram on the brain’s mechanisms involved in sensory processing disorder.

Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF

New Insights in Management of (SPD) Sensory Processing Disorder

The protections cited are for public facilities where the triggers can often prevent an affected individual from safe and healthful use. It is said be a part of current disability law (i.e. autism v. Disney lawsuit). But rarely is enforced. Most people are unaware of the science and cause and effect of the triggers to behavioral melt-downs. In addittion to sensory protections, there needs to be better understanding of directions on UIs of web sites, signage, directions, product labels, etc. Today, I find you’re more likely to see a foreign language accommodation, than a cognitive disability one.

TSA Cares Logo

Airport Travel, Screening, and TSA Services for Persons with Hydrocephalus

This blog features updated information on TSA Meet and Assist services for passengers with disabilities, and safety information on airport scanners for safe use by persons with programmable shunts for hydrocephalus. I also cover use of TSA Meet and Assist services for persons with cognitive disabilities, and information on the Air Carrier Access Act.

Airport scanners had earlier worried me as I live with a programmable CNS shunt for hydrocephalus, and I have been over-exposed to radiation from CT brain scans. With my Codman Certas CNS shunt valve, I do not go thru the metal detectors at airports or anywhere (even though some state magnetic field is safe for my shunt). I recommend that if you have any type of programmable CNS shunt, that you do not go thru metal detectors.

I’ve since updated this blog with newer information on the safe use of airport scanners.

The next two blogs list helpful information on mobile apps for sensory processing disorder, as well as apps I use and recommend for living with hydrocephalus.

Blog: Mobile Sound Apps for Hydrocephalus & Sensory Processing Disorder

Barometric Pressure graph reveals steep drop and rise which can trigger micraine headache

eWeather HD App helpful in Managing Weather related Migraine Headache

This next blog is a discussion of how to best select and design medical and mHealth apps. It comes from my many years of experience in mHealth & diagnostic medicine.

mHealth Apps in Neurology

Design and Best use of mHealth Apps

Perhaps my most creative public outreach is the fun HydroPowered.org web site for hydrocephalus. I created this in 2013 as a fun platform to share art, technology, and super-hero stories among those affected by hydrocephalus.

HydroPowered.org Share the Passion for Hydrocephalus

Blog on HydroPowered.org Platform Connects Hydrocephalus Families

Let’s undertake some effort in hydrocephalus for Rare Disease Day. If needed, I am prepared to call upon “The Hulk” for a little extra help.

The Hulk comes to the aid of persons with cognitive disabilities & SPDs, crushing this noisy tree trimming machine.

Apps & Web Sites I Recommend for Persons Living with Hydrocephalus

Android Play Store Elecont HD Weather App link

Apple iTunes Store Elecont HD Weather App link

My *Blog on eWeather HD* App and How to get FREE Android Download

My Blog on Tips for Sound Sensory Processing Disorder

Smart Tools Page on the Android Play Store

Smart Tools Apps on the iTunes Apple Store

Smart Tools Instruction Manual

Tips on Airport Travel, Screening, and TSA Services for Persons with Hydrocephalus

Drumming for Wellness workshops

Drumming in the Workplace

Drumming Therapy Case Study in a Child with Cerebral Palsy and Autism

HydroPowered.org

Shunt Monitoring and Consults for NPH & Hydrocephalus

DiaCeph Monitoring Method hopes to be new Mobile App

If I’ve left out any my blogs or apps, please let me know. If I may help you with hydrocephalus mobile apps, hydrocephalus consults, or drumming therapy for hydrocephalus, or if you are interested in furthering the development of the DiaCeph Test or other mobile apps for hydrocephalus, let me know. Contact me via my info below. Feel free to CLICK and SAVE my contact JPEG card.

Stephen Dolle
Email: contact[at]dollecommunications[dot]com
Dolle Communications
HydroPowered.org
StephenDolle.com

Fun Web Site for Hydrocephalus features Super-Heroes and Art

Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner

In 2013, I obtained the HydroPowered.org domain and created a basic web site for sharing of fun, art, and culture on a technology platform for individuals and families affected by hydrocephalus. The image at top was created from one of my MRI brain scans, with editing from the Pic Say Pro app. I then added a tribute to Godfrey Houndsfield for his engineering vision, and EMI Labs (a division of EMI Records), for funding his project that led to the invention of the CT scanner – arguably the greatest medical invention we have to date.

I do all of this on a shoe-string budget. Still, I feel I could offer those affected by hydrocephalus a new and fun way to connect on art and fun topics.

I acquired the HydroPowered.org web site by researching domains that were available with the word “hydro,” short for hydrocephalus, which means water on the brain.

HydroPowered.org Share the Passion for Hydrocephalus

I created the above “blue swirl” image as my first logo from one of my MRI brain scans using the Pic Say Pro mobile app. Then, on my web site and Facebook group, I added additional art with the water or “hydro” theme, including, the Schick Hydro razor. The links below go to my web site and Facebook pages of “hydro” art.

Facebook “Hydro” Art

“Hydro” Art and Designs for Hydrocephalus on HydroPowered.org

Hydrocephalus Awareness Month 2014

I am hoping to create fun and cool art for hydrocephalus, separate from the disabiling realities of the condition. This came together one evening in May 2013, though my original idea started back at a hydrocephalus conference in the year 2000. Since 2013, I’ve added HydroPowered art and super-hero stories, and am looking to add more stories and characters.

Hydrocephalus HydroPowered Super-Heroes

Spiderman Super Hero for Hydrocephalus stories at HydroPowered.org

I want to expand on the “super-hero” theme. I’ve written a few tie-in super hero stories on HydroPowered.org. I actually envision a series of HydroPowered super hero characters. I’ve also created a Facebook Fan Page so other “hydros” (that’s a term we often call each other) can post/share their art and stories.

I continue to brain storm ideas to get this out to the masses without having to spend a lot of money or time. I have made custom T-shirts and polo shirts at Vistaprint online. I’d even be willing to try a “daring PR stunt” if that would bring awareness to this cause.

Drumming workshop for balance and movement challenges in living with hydrocephalus

On Thursday Sept. 24, 2015, I along with HydroPowered.org will feature two drumming workshops for hydrocephalus to address balance, cognition, and movement at the NHF Patient Power conference at the Sheraton Park Hotel in Anaheim, CA. SEE registration info in the flyer. The workshops are free. But there’s a $50 conference fee.

In addition, I am trying to put together a “Drum-off for Hydrocephalus” to help raise awareness and funding for hydrocephalus.

Drum-off for Hydrocephalus

Great pic NHF members affected by hydrtocephalus at a 2015 Orange County fundraiser.

In July 2015, I put together a photo collage with my NFL lookalike, JJ Watt, of the Houston Texans. Check out the similarities below of JJ to my photos at his age.

Photo look-alike collage of Stephen Dolle & JJ Watt of the Houston Texans

I am hoping this look-alike photo collage might create some social network interest in this cause. It was two years ago that I realized JJ & I look alike like. And he seems a lot like me too, with both of us growing up in the Mid-West. So, for Throwback Thursday, I put together this photo collage, and put it on several of the social platforms, hoping to bring attention to hydrocephalus and my efforts with HydroPowered.

Since 1985, I’ve provided quite a bit of outreach & CSR to Orange County area organizations. During the 1980s, my outreach and fundraising efforts were in little baseball, AYSO soccer, the Costa Mesa Chamber of Commerce, Hoag Memorial Hospital, community theatre, and arts in Costa Mesa and Laguna Beach. But since the late 1990s, my focus has shifted to hydrocephalus, and a variety of community causes I’ve undertaken with drumming, or drum circles. I also headed up the drumming Meetup, Orange County Drum Circle.

Stephen Dolle in Washington, D.C. for 1999 STAMP Conference

Since 1995, I’ve been a patient advocate for hydrocephalus, and have been answering patient, medical, CNS shunt, and FDA guidan questions on hydrocephalus. In 2009, I began offering consults in monitoring, since my DiaCeph Test for monitoring never became available. For several years, I was also a board member for the National Hydrocephalus Foundation, and helped with PR and fundraising.

In drum circle facilitation, I own enough instruments to put on drum circles for groups as large as 100 people. And I have facilitated groups as large as 250 drummers. I’ve been organizing and facilitating these drum circles over the last 7-8 years in spite of my own health challenges with hydrocephalus and CNS shunt brain surgeries from a 1992 auto accident, which now total 12 surgeries. But, it hasn’t stopped me from giving back, from being involved in CSR and being a pivitol part of Orange County area outreach.  Come Sept. 2015, I’ll be putting on two drum circles at the National Hydrocephalus Foundation conference in Anaheim, CA.

Hydrocephalus Awareness Month 2014

Stephen Dolle receives award at Costa Mesa Chamber event.

Back in the 1980s for several years, I served as an independent consultant and helped in sponsorship of a number of area sporting and community events, including, the 1992 Great American Race. 1998 was my first big fundraising endeavor after my injury, where I headed up field sponsorship for the Foothill High School baseball program. Still today, I feel I understand cause marketing, though I always appreciate others’ feedback. If I had not gotten in an auto accident in 1992 and developed hydrocephalus, my plan was to leave health care completely and transition into sports & entertainment agent services.

Drumming for Wellness at the UCI Women’s Wellness Day

There comes a time when even the best of us become recipients of outreach. Since 2012, I’ve been overwhelmed by complications with my hydrocephalus. In March 2015, this led me to I put my own case study and complications up on my blog, knowing all too well I could face scrutiny for it. I felt like I had no choice. I was between a rock and a hard spot, struggling with my health, and struggling to work and take care of myself. You can find it under March 2015 topics.

Pain management and mindfulness in Shunt Revision

I’d like HydroPowered.org to be a different take on hydrocephalus outreach, more about fun, cool, a mix of art, technology, and culture – with a super-hero theme too. I felt the platform might be helpful in fundraisers too much as the 2014 Summer ALS ICE Bucket Challenge that became a mainstream hit.

Since 2013, I have been brain storming and scouring the web for HydroPowered art and photos. It now includes hydropowered racing boats, monster waves, hydropowered damns, the Schick Hydro razor, and basketball. I’m an avid shooter and have even written a special blog on my insights into basketball.

Sports vs. Brain Science of Basketball

Your Basketball Spirit Guide may help more than you know during Shooting

The plight of hydrocephalus, the stories, the data, and outcomes remain troubling today. It is the leading neurosurgical procedure in children, and affects individuals from in utero to very late in life. CNS shunts, which first came into use as its primary means of treatment in the 1950s, are still standard treatment today. Outcomes are often followed by disability, many numerous shunt malfunctions, and corrective surgeries. The average life of a shunt today is still about 5 years. Several leading programmable shunts in recent years have also been plagued with bizarre programming failures that added to the chaos. In fact, my own shunt implanted less than two years ago, has already been recalled. So hydrocephalus really needs a make-over!

As for famous individuals with hydrocephalus, the Reverand Billy Graham lived with NPH, a form of hydrocephalus, and a shunt for the last 8-10 years of his life. Rock & Roll guitarist, Dick Wagner of Alice Cooper, who passed away this past July, lived with hydrocephalus for several years. And former San Francisco 49ers player, George Visger, developed hydrocephalus after a series of concussions from football.

Incredible Hulk Inspires Kids and others with Hydrocephalus

Android DiaCeph App for Hydrocephalus would improve hydrocephalus care worldwide

As a neuroscientist who provides hydrocephalus monitoring and consults to families in this space, I am adament that CNS shunt technology, and all of its FDA regulations, are in need of an overhaul. We need to change the dynamics and philosophy of the medical field in hydrocephalus care, from “can’t do” to “yes, we will do!” Today, hydrocephalus care & CNS shunt technology remains dominated by a handful of old guard philosophy medical companies and physicians who have resisted the kind of progress we need for many years. Today we need more free-thinkers, more doers! More of an Apple or Google mindset. The same place, same thing, is not producing the kind of advances we need.

I also realize hydrocephalus research is in need of funding, and I believe the HydroPowered platform can play a pivitol role in this going forward. I can compare our plight a bit similar to that of spinal cord injury (SPI) at thetime actor Christopher Reeves became paralyzed. In his case, he almost single-handedly changed the dynamics & funding of SCI. In his brilliant campaign, he initially “called out” the old guard of SCI work that was holding back progress, and then went on to raise money & create progress in SCI treatment that’s not really been seen in any other disorder outside of AIDs.

For several years back in the 1990s, Christopher Reeves had been one of the highest paid speakers in the world, with both political parties vying for him to appear at their conventions. Those were “wow” moments in PR and cause marketing! Today, football players living with SCI, owe vastly improved outcomes to the dynamic efforts of Christopher Reeves.

Below, is my HydroPowered web site & Facebook links. Take a moment to read over it.

HydroPowered.org

HydroPowered Facebook Group

SpiderMan Movie Trailer

Contact me if you would like to speak with me.

Stephen Dolle
Dolle Communications
Email: contact [at] dollecommunications.com
Dolle Communications

HydroPowered.org

Stephen Dolle Headshot in a Suit

Drum Off for Hydrocephalus Awareness

Drumming workshop for balance and movement challenges in living with hydrocephalus

OK. This Thursday Sept. 24, 2015 I will feature two drumming workshops for hydrocephalus to address balance, cognition, and movement at the NHF Patient Power conference at the Sheraton Park Hotel in Anaheim, CA. SEE registration info in the flyer. The workshops are free. But there’s a $50 conference fee.

Notre Dame Drumline Friday Afternoon Drummers Circle

I am offering to organize a “DRUM OFF FOR HYDROCEPHALUS” and have it VIDEOTAPED and posted on YouTube. Then, I’d be looking for others around the world affected by hydrocephalus, or interested in helping the cause, to organize their own drum circle with instruments of their culture and region, and post a video of their DRUM-OFF on YouTube – so we may have an international conversation on hydrocephalus. I’ve enclosed the video of the Notre Dame drum off for breast cancer as an example.

I had hoped to do this at the 2015 NHF Conference on Sept. 24th or 25th in Anaheim, CA. But I’m informed the schedule cannot fit it in. We have hydrocephalus groups around the world, and in remote places like Nigeria. I’d love to involve our global “hydro brothers & sisters” in a global “drum off for hydrocephalus.” I envision it as a bit like “Playing for Change” too. And if someone wanted to edit some of the drum segments and create one master song, I’d be very excited for that.

Along with the Drum-off for Hydrocephalus, I’d like to also feature the web site HydroPowered.org – which I created two years ago to further hydrocephalus awareness, and to allow those affected by hydrocephalus to come together to share art, technology, super hero stories, and fun stuff separate from their medical stories.

My Story on HydroPowered.org

I have personally been living with the disorder hydrocephalus since 1992, and I would be participating in this as organizer, drummer, facilitator, and affected patient. As a patient advocate, I’ve been involved in advocacy, public policy, and the development of mHealth technology hydrocephalus. Still today it remains complicated by a lack of medical research and innovation in new treatments, CNS shunt and diagnostic technology, and awareness.

HydroPowered.org Share the Passion for Hydrocephalus

So I need an alternative 2015 venue to hold the Drum-off for Hydrocephalus if I want it done this year. I have enough instruments for 75-100 people, though we ideally only need 30-50 playing. And I will invite 10 or so experienced drummers to help in supporting the drumming. I need to have someone be responsible for videotaping the performance, and perhaps some interviews. I and others I know have video cameras, or even a phone camera might do. But editing the video takes some skill. I can only do basic editing for posting on YouTube. I will also need to have a banner made (VistaPrint) saying “Hydrocephalus Drum-Off, Orange County, CA.” And this can be displayed with the video on YouTube. Once I have a date and location selected, I can post updates here and on http://www.HydroPowered.org site and Facebook group.

I will still be offering two drumming workshops at the National Hydrocephalus Foundation PATIENT POWER conference on Sept. 24th 2015. This would allow individuals and families affected by hydrocephalus to come together and experience the POWER of the drum, and the POWER of connectedness for hydrocephalus.

National Hydrocephalus Foundation (NHF)

NHF Logo

NHF PATIENT POWER Conference Agenda

https://www.facebook.com/events/1471103479847030/

Below, is a video from a drum circle I put on in 2012 for Young Onset Parkinson’s Disease, and it was part of the 2012 Young Onset Parkinson’s Conference in Orange County, CA.

OC Conference 2012 030.MOV

 

Drumming for wellness helps seniors and those facing chronic illness

Drum Circles make for great Children’s Activity as young as age 3.

Hydrocephalus effects about 1 in 1000 infants & young children, and occurs in seniors as the disorder NPH (normal pressure hydrocephalus), and it also occurs to others following head trauma, hemorage, tumor, cyst, and often occurs secondary to spina bifida, Dandy-Walker, Arnold-Chiari, and meningitis. In children, it is the most commonly performed neurosurgical procedure. It poses numerous diagnostic challenges to physicians, families, and those living with it. Hydrocephalus is treated the same around the world, mostly by implanting a CNS shunt. So, a mHealth mobile or software app would help individuals in the U.S. as well as developing countries like Africa & S. America.

Seniors came alive to play and dance during this 2010 drum circle at the Costa Mesa senior center.

Drumming is a great tool in teambuilding and in engaging those around you

In developing countries, hydrocephalus is even more tragic and fatal. Doctors without borders and other organizations, often travel to developing countries to perform initial surgeries. But since shunt failure is a common occurance, follow up diagnostics and availability to corrective surgery presents additional challenges. The availability of a mobile software app to collect and document developing patient status information would help save lives and minimize shunt complications. A diagnostic mobile app could offer early critical diagnostic information on device function and patient status.

Stephen Dolle in Washington, D.C. for 1999 STAMP Conference

The purpose of the “Hydrocephalus Drum-Off” is to raise awareness of hydrocephalus, and to help with fundraising and funding of hydrocephalus research in the U.S. and worldwide.

Related Blogs and Information

Spread Awareness of Hydrocephalus on Rare Disease Day 2015

Cause Marketing Web Site for Hydrocephalus uses Super-Hero Theme

Fundraising for Hydrocephalus: Follow the Creators of the Ice Bucket Challenge

Hydrocephalus Monitoring Method Hopes to be new mHealth App

How the Internet is like one big DRUM CIRCLE

Contact me through my web site my information here. 

Stephen Dolle

Dolle Communications

Use of Barometric Pressure Data in Management of Migraine

Migraine headache can get you out of your routine

Use of Barometric Pressure Data in the Management of Migraine

This March 2015 migraine blog below is now my primary blog on this topic. I also give away FREE access codes to the Elecont eWeather HD app:

Weather App Helps Manage Barometric Pressure Related Migraine Headache

Barometric Pressure graph reveals steep drop and rise which can trigger micraine headache

Migraine and weather related headaches affect some 15% or more of the population. In more recent years, much has been written about the connection between weather patterns and headache, where falling barometric pressure and rising humidity can often trigger migraine headaches, which are “low pressure” headaches characterized by dilated blood vessels in the brain. The most popular over the counter migraine medicine, Excedrin, then combines aspirin or Tylenol with caffeine (as a vasoconstrictor) to combat this medical sequel of dilated blood vessels. But, it is helpful to know during initial onset of a headache, if it in fact is barometric pressure induced so that you choose the right medicine and treatment.

I personally live with the medical condition hydrocephalus, and as a neuroscientist, I provide patient consults, neurological monitoring, advise on the role of technology, and provide drum circle workshops for health & wellness. Still, for me and so many other Americans, migraine headache and weather related triggers, pose regular challenges. So I turn to technology for a solution.

Over the last several years, I have come to use two separate weather sources for obtaining the much needed correlating weather data. They are:

1) http://www.wunderground.com/

2) http://www.elecont.com/ 

Elecont is a high tech mobile phone weather app  It’s $4.99 on Android and $3.99 on Apple stores. I have FREE access codes to download the Android version.

The barometric pressure data that these sites and apps offer is then extraordinarily useful in monitoring and pain management of migraine headaches, especially in hydrocephalus. I’ve inserted 3 weather data photos here, if they load correctly. They include a jpeg image of barometric pressure up thru 6pm on March 23, 2014, showing a rapid rise in pressure between 8am and 11am, which can trigger a high pressure headache, which would be more unique I think for persons with hydrocephalus. At 11am, I felt it likely was the trigger of that headache on that morning. Also, a 2nd bit of data that was helpful was the rising humidity at 11am, known to also act as a trigger for headache.

I didn’t save the inserted until about 6pm that day, which shows the pressure leveling off by 12 noon. This leveling also corresponded to a leveling off of my headache, though it took 2-3 hours, or around 3pm. I had been noticing over the last several months that I was suffering from headaches often as the barometric pressure was rising. So when I saw the big spike by 11am, I knew I was in for a rough headache day, and adjusted my medication & activity schedule accordingly. I was happy that the pressure leveled off and stayed level for the afternoon, as it allowed my headache to dissipate by 3pm.

More often, migraine will be triggered by “falling” barometric pressure. There is specific diagnostic significance for those who might experience headache during a rising barometric pressure. I can’t advise you here without any supporting medical history. So I recommend you speak to your neurologist or neurosurgeon as to the significance of your pressure correlation.

In hydrocephalus, a headache from rising pressure would indicate either an increased sensitivity to pressure changes from hydrocephalus that is not well arrested after shunting or ETV, and/or during periods of increased intracranial pressure, or ICP. It is conceivable that a headache response from a high pressure weather front might also indicate “shunt malfunction” in hydrocephalus, should you not normally get a headache from rising pressure. what was also significant in my case on this day, is that as soon as the pressure leveled off, so did my headache, though by about two hours. The dissipation with leveling pressure also served to confirm the weather correlation. As I’ve been using this weather data for 3-4 years now, the correlation then served as biofeedback in management experience.

I am working on developing a mobile app for hydrocephalus monitoring, called the DiaCeph Test, which will incorporate weather data in the interface and during monitoring, to correlate and help in management of headache from barometric pressure weather changes. I first applied for patent for my DiaCeph Test way back in 1997, and was considered a visionary for this, and apps did not yet exist. It was going to run as a stand-alone PDA. So, I was one of the earliest pioneers of mobile apps, before they were even possible. Also around that time, scientists at the University of Pittsburgh and Henry Ford Center in Detroit, introduced a software method of monitoring sports concussion, called the Impact Test.

Please contact me if you are interested in helping to develop these neurological apps.

May you ride out your headaches like a surfer thru a wave!

Stephen Dolle
http://www.dollecommunications.com

Hydrocephalus and NPH Monitoring by Stephen Dolle of Dolle Communications

Welcome to my NPH and Hydrocephalus Shunt Monitoring Services

My name is Stephen Dolle and I am a neuroscience researcher and medical (shunt) device consultant for the disorder, hydrocephalus. While my Test Test is yet to be made into a mobile app (few apps for chronic disorders are available today), I provide FREE forms & instructions that patients and families can use. Or, you can pay me to guide you thru the monitoring process, where I can also write up diagnostic reports for your doctors. My fees for this are $125/hour. More information is also available on my web site regarding consulting and monitoring at hydrocephalus treatment & forms. These forms are a great way to keep track of your hydrocephalus history of complaints. Below, I discuss what the monitoring forms and user instructions do, and share some of my patient’s monitoring reports.

The DiaCeph paper methodology could easily be produced as a mobile data app.

I became scientifically involved in CNS shunts and shunt monitoring in 1994, several years after a brain injury and onset of hydrocephalus. I had performed shuntograms and cisternograms for hydrocephalus as a nuclear medicine technologist from 1976-1992 before succumbing to the condition myself. So I was quite familiar with hydrocephalus. But it was two years after my own onset of hydrocephalus with a slew of all too common complications, that I became scientifically involved first as an FDA patient advocate, and eventually, as inventor of the DiaCeph Test – an mHealth app that was to run on a PDA and monitor hydrocephalus as early as 1999.

Knowledge is Power

From 1999-2003, I worked with my start-up company, DiaCeph, Inc., developing the concept and trying to raise funds for development. I continued some FDA patient advocacy thru 2007, but eventually moved on into other interests in the neurosciences, most notably, putting on drumming events and drumming for the brain workshops. I continued to stay abreast of CNS shunt technology. And in 2009, I began providing NPH hydrocephalus shunt monitoring and patient consults. Information about these services can be found via the link below.

Dolle Communications Web Site – Hydrocephalus Monitoring

Brain Diagram of Ventricles often Enlarged in Hydrocephalus

My drumming workshops became very successful. In Sept. 2015, I put on two drumming workshops and proposed a “Drum-Off for Hydrocephalus” at the National Hydrocephalus Foundation’s PATIENT POWER Conference in Anaheim, California. Feel free to speak to Debbi Fields as to the success of these drum circles.

Below are my July 2016 updated DiaCeph NPH & hydrocephalus monitoring forms and instructions. They are also pictured below as images. New to this series, is a historical flow chart (2nd below) for retrospectively plotting hydrocephalus complaint levels vs shunt opening pressures for any period from a few months up to 10 or 15 years. The instructions for how to do this are included in the back of my July 2016 DiaCeph NPH Hydrocephalus Monitoring Instructions. You are free to download and use these forms. These are also available on my SlideShare.net – SEE further below. Or, you may download from my web site (once I’ve updated it there) hydrocephalus treatment & forms. This is a good way to keep track of your hydrocephalus history of complaints.

Diaceph 5 day 7 marker NPH hydrocephalus shunt monitoring form

Diaceph NPH hydrocephalus historical shunt outcomes flow chart

DiaCeph Test MONITORING INSTRUCTIONS

DiaCeph Test MONITORING FORM

DiaCeph Test FLOW CHART

Below are two sample patient reports from hydrocephalus consults I’ve done over the last 7 years. I have permission to host & share these two patient reports so that others affected by hydrocephalus can learn of these new methods in hydrocephalus monitoring.

In the first report, the patient collected 2 weeks of monitoring data via a journal I provided him, and then returned the completed journal via Fed-Ex. From this data, I created ICP graphs using the Microsoft Excel program. And I then interpreted the graphs and wrote up a 15 page report for he and his doctors.

In the second report, I reviewed an NPH patient’s CT and MRI brain scans and medical history for signs of shunt malfunction, aging, and brain atrophy. I then wrote up a report for the patient, and a second report for his physician.

I provide these consults as a medical (shunt) device consultant, mHealth designer, and former imaging consultant. These two reports are as follows:

NPH DiaCeph Monitoring Report #1 on SlideShare.net

Diaceph hydrocephalus monitoring report.sample presentation from Stephen Dolle

 

NPH Consult Report #2 on SlideShare.net

NPH Hydrocephalus Patient Consult Report w/ Review of CT Brain Images from Stephen Dolle

 

Below, are the same (2) DiaCeph Monitoring reports from above, but on my web site as a web page (Report #1), and as PDF files (Reports #1 & #2) for download:

 

NPH DiaCeph Monitoring Report #1 (as web page)

Url address graphic

NPH DiaCeph Monitoring Report #1 (as PDF file)

DiaCeph Hydrocephalus Monitoring Booklet

NPH Consult Report #2 (as PDF file)

DiaCeph Hydrocephalus Monitoring Booklet

I write about mHealth mobile apps for managing neurological disorders and hydrocephalus. Below is a popular blog on managing migraine with weather apps.

Mobile Apps to help in Management of Weather Related Migraine

The Elecont HD app provides an hour by hour barometric pressure reading that can be used to help manage migraine headache.

This next blog also contains links to many of the mobile apps I have used or recommend for hydrocephalus and related neurological disorders. You will find the links at the bottom of the blog.

Design and Best Use of MHealth Apps

mHealth Apps in Neurology

Below is a tandem DiaCeph Test – Single ICP Tap study I published in 2003, where my DiaCeph Test monitoring I undertook accurately corroborated ICP readings done by my neurosurgeon.

Dolle Communications Tandem ICP Tap – DiaCeph Test Study

Shunt Illustration for Hydrocephalus

Below is information on my current efforts to make the DiaCeph Test into a mobile data app:

Hydrocephalus Monitoring Test Hopes to be New mHealth App

Below, is airport, TSA assistance, and scanner information on traveling with CNS shunts and cognitive disabilities.

Tips on TSA Airline & Airport Information for Travelors with CNS Shunts

TSA Cares Logo

Below, are some newer efforts I have undertaken on behalf of accessibility for persons with cognitive disabilities:

Cognitive Accessibility in Hydrocephalus

Cognitive Accessibility accommodations er CognitiveAccessibility.org

And below, is the home page of my Dolle Communications web site listing my various web pages under the cognitive neurosciences.

Dolle Communications – Cognitive Neuroscience Home Page

Hydrocephalus monitoring, drum circles, and neuroscience solutions by Dolle Communications

Please contact me accordingly. Best method of contact is email. Please contact me per the information below.

Stephen Dolle
Neuroscientist, mHealth Inventor & Drum Circle Facilitator
Email: contact[at]dollecommunications[dot]com
Hydrocephalus Survivor w/ 12 Shunt Revisions
DolleCommunications.com

Tips on Airport Travel, Screening, and TSA Meet and Assist Info for Passengers with Disabilities – contact me for Password

TSA Cares Logo

The following is information on TSA Meet and Assist services for airline passengers with disabilities, plus safety information on airport scanners, and safe use by persons with programmable shunts for hydrocephalus, and other medical implants such as deep brain stimulators (DBS) for Parkinson’s Disease. I also have information below on TSA Meet and Assist services for persons with cognitive disabilities, and updated information on the Air Carrier Access Act.

The link below contains safety information on the affects of magnetic fields, metal detectors, and x-rays on deep brain stimulators (DBS). SEE pages 40, 42, and 43.

Guide to Deep Brain Stimulators for Parkinson’s Disease

Unfortunately, there is no universal guide to magnetic field safety information for programmable shunt for hydrocephalus. Some of the shunts today are unaffected by magnetic fields, and some still are. I refer you to a blog I have written on mHealth tools for hydrocephalus, where in there, I discuss EMF or metal detector mobile apps that can be used to screen your surroundings for magnetic field strength. Beyond that, I would ask your neurosurgeon for information on your shunt from its manufacturer.

mHealth Tools & Accommodations for Living with Hydrocephalus

Airport scanners had earlier worried me as I live with a programmable CNS shunt for hydrocephalus, and I have been over-exposed to radiation from CT brain scans. With my Codman Certas CNS shunt valve, I do not go thru the metal detectors at airports or anywhere (even though some state magnetic field is safe for my shunt). I recommend that if you have any type of programmable CNS shunt, that you do not go thru metal detectors.

I’ve since updated this blog with newer information on the safety of airport scanners.

When I wrote this blog in 2012, I could not get any information on whether I could go thru the metal detectors & low frequency body scanners at the airports with my Codman programmable Certas brain shunt. Neither Codman or TSA could tell me if it was safe to go thru the scanners when I telephoned them. All Codman would say is my Certas shunt was safe up to 80 guasse. TSA did not know of the field strength of airport metal detectors and scanners. I have provided updated information on the safety of airport scanners and the Air Carrier Access Act in this May 2015 update.

Shunt Illustration for Hydrocephalus

The Air Carrier Access Act, Title 14 CFR Part 382, explains protections and discrimination of persons with a disability. It also provides information for filing a complaint if you feel you have been mistreated, which is more likely to happen if you live with a disability that is not so obvious, such as hydrocephalus. You may file a complaint via the 2nd link below.

Last July 2014, I was faced with a horrible incident by Delta Airlines that might be protected by the Air Carrier Access Act. I  was traveling to Northern Michigan when my plane was rerouted to Cincinnati, Ohio, when the Detroit airport was temporily closed due to a rain storm. At 1:30 a.m. I was dropped off at the Detroit airport without any overnight provisions or instructions, and was forced to sleep on a seat in the airport. I had to track down airport security to ask them what to do and where to sleep. I felt Delta’s failure to help arrange for overnight accommodations, and lack of information when I arrived late at the Detroit airport, was a violation of TSA’s Meet and Assist provisions of the Air Carrier Access Act. In their view, the only accommodation they need provide me was a “wheelchair.” They offered no assistance for an individual with a cognitive disability. I still may explore a complaint as I need to know what accommodations are available to me in the event I am not feeling well, and suffer cognitive and memory challenges while traveling. Please let me know if you’ve had any experiences with Air Carrier Access Act complaints regarding cognitive disabilities.

Air Carrier Access Act, U.S. Department of Transportation:

http://www.dot.gov/airconsumer/passengers-disabilities

File a Complaint:

http://www.dot.gov/airconsumer/file-consumer-complaint

As of 2015, I feel more confident going through either x-ray or the newer millimeter wave scanner at airports in the interest of time during travel. Yes, there is some very slight x-ray or magnetic field exposure. But for the occasional flight, I find it safe to pass through. If for any reason you feel uncomfortable with any of the scanners, you may request a “pat down screening,” which takes an additional 15 minutes, which involves a TSA employee of your sex to use the backs of their hands in a pat down. I find these completely non-threatening. Some programmable shunts & pacemakers may still be affected by airport metal detectors. So a pat down screening can be a safe alternative. You may also request to go in a private area – though I did not opt for this. The pat down bypasses having to undergo the metal detectors and whole body scanners. When I travelled in 2014, I opted to go thru the scanners in the interest of time. Ultimately, you should do what you are comfortable with. I just want to report that I do NOT see any adverse effect of airport scanners on programmable shunts according to the April 2014 study I have included below.

A passenger undergoes a standard wholle body scan during check-in.

UPDATED INFORMATION ON AIRPORT SCANNERS:

If you have a programmable brain shunt, pacemaker, or other medical implant, I am told that you can safely go thru either the whole body x-ray scanner, or Millimeter Wave scanner at airports. This April 2014 study below lists information and radiation exposure levels from airport scanners.

http://www.sciencedirect.com/science/article/pii/S1687850714000168

The effective dose estimates from a single scan x-ray range from 0.015 μSv to 0.88 μSv. To put these numbers into perspective, air travel can expose a passenger to 0.04 μSv per minute from cosmic radiation (Zanotti-Fregonara & Hindie, 2011). To look at this from another perspective, a passenger would have to pass through a backscatter scanner 1000–2000 times to equal the dose from a medical chest X-ray (Mahesh, 2010) which is also equivalent to the dose from 3 to 9 min of daily living (Mehta & Smith-Bindman, 2011).

Alternately, more airports are using the Millimeter-wave system scanner. These units do not expose passengers to ionizing radiation. They use a form of electromagnetic radiation called millimeter-waves that lie in the spectral region between radio waves and infrared to obtain images. The millimeter-wave scanners possess a unique property to pass transparently through lightweight materials such as clothing (Moulder, 2012).

Although millimeter-wave scanners are becoming the primary full-body scanners used at airport security checks, there is still an alarmingly small amount of information about its potential health effects. The millimeter-wave safety standards are dose rate (power density) standards expressed in mW/m². The power density for a millimeter –wave scan is between 0.00001 and 0.0006 mW/cm² (Moulder, 2012). These scanners are believed to be less harmful to passengers because they emit nonionizing radiation and presumably do not have the potential for cancer causing DNA damage.

TSA MEET & ASSIST:

If you suffer from a cognitive or intellectual disability, such as hydrocephalus, autism, or dimentia, and would like to use the special TSA assistance services during check-in, all you need do is inform an attendant at the airline check-in counter.

They will call a TSA representative over for you, and you can be escorted either by wheel chair, or by walking with you, thru security and to boading your plane. If you suffer from a cognitive disability, having someone accompany you thru these security procedures, screening or pat down, and all the way thru to your gate to boarding your plane, can be INVALUABLE. Below, is information on travel for passengers with disabilities.

TSA Information for Passengers with Disabilities:

http://www.tsa.gov/traveler-information/travelers-disabilities-and-medical-conditions

You can obtain a TSA Notification Card on their site that you can fill in and print and bring with you. But it is not necessary. On their web site, you will also find a number of links for different types of implants and disabilities, including, cognitive disability which is grouped with autism. Never before has there been much assistance for people with brain injury & disorders. So this is a welcome advancement.

By law, TSA & airline staff are not permitted to question you about a disability or medical implant. What you choose to share is up to you. But, I think it’s a good idea to be forthright as it helps all involved.

Assistance with Cognitive or Intellectual Disabilities:

http://www.tsa.gov/traveler-information/autism-or-intellectual-disabilities

Brain health will become the biggest challenge of the 21st Century.

If you also suffer from sensory processing disorder, where you are sensitive to sound, lights, scents, or motion, you will no doubt want to take additional steps to insure you do not get overwhelmed by airport noise and commotion. I recommend musician’s earplugs from when you first arrive at the airport until the plane lands at its final destination. Adequate hydration, and drinks like ginger ale, are also helpful for complaints associated with sensory processing disorder. Remember to bring any necessary carry on items and clothing, plus medication you may need on your flight.

TSA Meet & Assist also gives you pre-boarding privileges on all airlines.

With airlines such as Jet Blue and Southwest, it allows you to bypass having to obtain a good seat ahead of time. It is nice to know this is available when you’re not feeling well. These services are available for individuals with medical implants & disabilities, and are based on the “honor” system, meaning, you don’t need to show proof of disability or implant. But don’t abuse it. Be honest!

The TSA or Transportation Safety Authority revamped many of its travel & security policies over the last couple of years for travelers with medical implants and/or disabilities, particularly cognitive disabilities from any number of disorders from TBI and hydrocephalus to autism. Below, I’ve listed links for traveling with cognitive disabilities and other disabilities for many of the major airlines.

American Airlines:

http://www.aa.com/i18n/travelInformation/specialAssistance/cogDevDisabilities.jsp

Southwest Airlines:

https://www.southwest.com/html/customer-service/unique-travel-needs/customers-with-disabilities-pol.html

Jet Blue:

https://www.jetblue.com/travel/special-needs/cognitive-disabilities/

Delta Airlines:

http://www.delta.com/content/www/en_US/traveling-with-us/special-travel-needs/disabilities.html

Alaska Airlines:

http://www.alaskaair.com/content/travel-info/accessible-services/specialservices-developmental.aspx

Flyer Talk Forum:

http://www.flyertalk.com/forum/disability-travel/1347886-airport-advice-travelers-disabilities.html

These services have been in the makes for quite a few years since 911 and were introduced in 2011 as “TSA Cares.” They can help make an otherwise terribly flying experience more bearable, particularly if you live with an affected medical implant, brain disorder, and/or cognitive disability. I hope you find this information helpful.

Stephen Dolle, Neuroscientist & Drum Circle Facilitator

If you would like to know more about my efforts with cognitive disabilities, sensory processing disorders (SPDs), drum circles for brain health, mHealth app monitoring, and hydrocephalus, please visit my web site below. Please contact me per the information below. 

Stephen Dolle

Neuroscientist, mHealth Inventor & Drum Circle Facilitator

Email:  contact[at]dollecommunications[dot]com

Hydrocephalus Survivor w/ 12 Shunt Revisions

DolleCommunications.com

Mobile Sound Level apps Helpful in Managing Sensory Processing Disorder

Android Apps

Decibel meter apps are helpful in managing the ill effects of sound exposure in brain injury, hydrocephalus, ADHD, PTSD, and related sensory processing disorders. Sound Meter is best app on Android. The Pro version is $.99. Though either is good. SPLnFFT is said to be best app on iPhone. Many are accurate enough for these purposes. Plus, what you really need, is comparative analysis of sound to medical sequela in the same app.

The science in support of monitoring sound level exposure comes amid findings that “sound” can trigger medical sequela, and result in a combative child or even adult out in public. The sequela typically ares headache, nausea, decreased cognition, irritability, and behavioral outbursts, and occurs in persons suffering from a variety of neurological injury & disorders. Light, motion, and scents are also triggers. The sensitivity, and type of trigger, does vary somewhat from person to person.

The medical condition for this is termed “sensory processing disorder” or SPD, and sometimes termed “sensory integration disorder,” and these tend to follow brain injury, neurological surgery (numerous ones including hydrocephalus and tumor), and many types of neurological disorders.

Brain Diagram of the Cranial Nerves

At any given time, the effected person is vulnerable to a range and type of sound triggers. Yet, this sensitivity and vulnerability often may not be known until AFTER the exposure. Often all it takes is 30 secs of problematic sound exposure to set off a sequel of SPD complaints. Then, you’re dealing with a medical problem.

Certainly the big ones like loud machinery, music, and room noise are predictable. But it is the not so loud and obvious exposures that’ll get you. And NOT knowing at any given time what your sensitivity or threshold is. And this comes from trial & experience.

I recommend downloading one of these apps and using it regularly for a couple of weeks to learn of your LOWEST threshold decibel levels – for when you’re not feeling well, and for various venues. Then, you can do things with more confidence in that you know your thresholds and can take the necessary interventions SOONER to avoid an ill spell or “melt down” in public. Today I learned too late, after being near a store playing loud overhead music. It was registering over 80 db on my Sound Meter app. I had not checked the sound level when I arrived. Once your system is triggered, it is often too late for other interventions or measures, and you’re likely going to have to leave that venue.

Unfortunately, current apps do not measure frequency distribution or sharp spikes in sound. Sound between 5000 Hz – 10,000 Hz is often problematic for individuals suffering with SPDs. The other causative elements includes sharp spikes in decibel level, and disordered sound presenting as “white noise.” If you, or a family member, suffers from sensory processing disorder, you know what I mean.

I undertook a sound sensory study in 2002 using a metronome to evaluate SPD complaint responses to various rhythmic patterns, and I was able to show that the component in sound most responsible for SPD complaints was “lack of rhythmic pattern.” My findings explain why white noise, or room noise, is so problematic. Read my full study below:

Study on Sound, Cognition and Sensory Processing

Boss BR-8 includes a full 50 selection Metronome

There are many treatments today that have found varying degrees of success in raising a person’s threshold to SPDs. They include: EMDR therapy, music therapy, group drumming (in which I have conducted research), bio feedback, mindfulness, basketball, meditation, occupational therapy. A variety of mild barbiturate medicines find use as well. I can’t say enough about the importance of proper rest & diet, managing stress, and drinking plenty of water. Vestibular exercises, meditation, mindfulness, and biofeedback therapies seem to help raise an affected persons sound intolerance.

New Dolle Communications Web Page on Cognitive Neuroscience

The brain and sensory system during cognition.

Once an exposure and SPD medical sequel has begun, your options include:
1) have the individual stay focused & “engaged” in an activity
2) insert quality ear plugs (suggest musician’s ear plugs)
3) remove the affected person from the triggering noise source
4) administer barbituate, pain or calming medication
5) force hydration preferable with water

On June 4, 2015, I published an extensive blog on basketball – which includes methods in shooting baskets, mindfulness, biofeedback & relaxation, and including drumming with basketball – which helps the brain, movement disorders, intolerance to sound, post concussion syndrome, and relieves stress.

(Dolle Blog) Sports Science vs Brain Science of Basketball

Basketball allows participants to feel and move rhythmically with a touch sensitive ball

Understanding Sound Sensory Processing & your Intolerance Level

If you suffer from sound sensory processing difficulties, I suggest you try one of the available decibel meter apps. I use the Smart Tools Pro Sound Meter pictured below. It also has a built in Vibrometer to evaluate motion say on a boat or car. You need to become familiar with your sound threshold range and intolerance, and screen typical levels at places you visit. You’ll need to add further consideration if there is machinery or other problematic noise that the individual would normally not process very well. All it takes is 30 secs of a problematic sound exposure to set off a sequel of SPD complaints. Develop good rules of practice.

Decibel Meter by Smart Tools

Call for a Sound Sensory Processing Scale & Algorithm of Measurement

The decibel sound scale is now more than 50 years old. Its time we create a Sound Processing Scale & Algorithm for Measurement

The current challenge is that these apps only measure level of volume. What we need, is a sound distribution EQ scale to equate how the brain processes sound (along with volume), which would require a convening of neurologists to scientists study this relationship, and establish a new sound scale to include the difficulty of processing of sound distributions. Sound engineers already know a great deal about the distribution or EQ of sound. To establish a sound processing scale, we would only need to equate various EQ sound patterns with the level of difficulty of processing by the brain. There are already sound identification apps that can identify patterns in music and ID them by song name. Two very popular apps are Soundhound and Shazam. We could use these existing sensors and algorithms to ID sound as very unforavorable vs acceptable in terms of ability to be processed by the brain. Persons with brain injury, learning and neurological disorders, and SPD (sensory processing disorder) have a diminished capacity to process sound, which I believe pares the degree and location of deficits in the brain. So, I have proposed the development of a sound processing scale and algorithm.

This new sound processing scale would encompass:

1. decibel volume and rate of change between volume levels (i.e. spikes)
2. EQ frequency distribution of the sound
3. rhythmic distribution and synchronization of the sound (i.e. white noise)

I host a larger blog on sensory processing challenges with examples of problematic sounds of machinery, etc. Just follow the link below. I try and keep these blogs up to date as time permits. My biggest new discovery in SPD comes after a study I undertook almost two years ago with the MigraineX ear plugs used in the management of headache, but also in sound suppression. I found that insertion of the MigraineX ear plugs before, and even after a harmful sound exposure has occurred, can lessen the associated headache, irritability, cognitive, and SPD complaints by 50% or more. Yes, I said SPD. So I carry the MigraineX ear plugs with me all the time. They are particularly helpful amid noise from construction, machinery, malls, restaurants, theatre halls, and more. They sell for about $12 on Amazon and many drug stores.

Secondly, I have been undertaking new barometric pressure monitoring utilizing my Samsung phone’s built in barometric pressure sensor. The built in sensor can display sharp Short term changes in pressure that weather sites often do not display. Most newer high end smart phones have this sensor built in. But you need to download an app to get the display. For this, I use the uBarometer Pro.

(Blog) New Insights in Sound Sensory Processing Disorder

If any app developers are reading this, I’d love to collaborate with you on building an SPD intollerance sound EQ app for screening of problematic sound. I can advise scientifically and in the UI (user interface, I have a good tech bkg-see page below). I’d like to couple an app with a Melon or NeuroSky EEG headband to try and correlate changes on EEG waveform with reported SPD complaints. SEE my extensive work in hydrocephalus monitoring and DiaCeph Test app design.
ADA laws with respect to sound protection for persons with SPDs is termed “cognitive accessibility.” There is an interesting legal case between families of children with autism and Disney, regarding Disney’s cancellation of the handicap pass to circumvent affected visitors standing in long lines, thereby forcing affected children to stand in line amid commotion and noise, which is unhealthful and can trigger behavioral outburst and a number of medical sequela in SPDs.

Deadline.com: Disney sued by Families with Autism over Handicap Pass

Cognitive Accessibility in SPDs.Hulk Destroys Tree Shredder

I am advocating for a new sound processing standard to encapsulate the brain’s role in processing sound. Persons suffering neurological disorders and from SPDs have a diminshed capacity to process sensory information, sound being the most common issue.

I host a related web page on sensory processing and cognitive or intellectual disabilities at www.CognitiveAccessibility.org.

Please visit my web site and contact me accordingly. Best method of contact is email.
Stephen Dolle
Neuroscientist, mHealth Inventor & Drum Circle Facilitator
Email: contact[at]dollecommunications[dot]com
Hydrocephalus Survivor w/ 12 Shunt Revisions
DolleCommunications.com