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

DiaCeph Test born out of an 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
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, 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
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 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 fundingFDA 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.
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.
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.
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.

Stephen Dolle Headshot in a Suit
Stephen Dolle Headshot in a Suit

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.
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
Tel. (949) 6424592
http://www.dollecommunications.com/
http://www.hydropowered.org

Contact Stephen Dolle
Contact Stephen Dolle

Mobile Apps and Accommodations for Living with Hydrocephalus

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

This blog discusses mHealth mobile phone apps and accommodations helpful in living with hydrocephalus. I wrote it initially in 2015 under the title “Spread Awareness of Hydrocephalus on Rare Disease Day.” 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
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 that was then used to direct this 1998 shunt surgery
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.

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
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 1999 STAMP Conference
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 and support 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. Below, you will find a link to a blog I’ve written as to the current day challenges facing the DiaCeph Test mobile app and similar mHealth apps.

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

DiaCeph Test could be an mHealth Mobile Phone App

It was in 2009, that after many years of my 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. However, such unresolved questions and unsatisfactory outcomes are very common in hydrocephalus still today – arguably as high as 30 percent of all patients with CNS shunts. Below, is a link to my company web page on obtaining a hydrocephalus consult and for hydrocephalus shunt monitoring utilizing custom DiaCeph paper forms & instructions.

Dolle Communications – Hydrocephalus & Shunt Monitoring Consults

Prosperity is based on sound information.
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.
Seniors came alive in this 2010 drum circle for wellness and movement.
Drumming workshop for balance and movement challenges in living with hydrocephalus
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.

Cognitive Accessibility accommodations er CognitiveAccessibility.org
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
Brain centers involved in SPD or sensory processing disorder, courtesy of UCSF

New Insights in Management of 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
TSA Cares Logo

Information on 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.

Google play-store-logo

Blog: Mobile Sound Apps for Hydrocephalus & Sensory Processing Disorder

 

Barometric Pressure graph reveals steep drop and rise which can trigger micraine headache
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
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
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 brain injured survivors in crushing this tree trimming machinery
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
Tel. (949) 642-4592
Email: contact[at]dollecommunications[dot]com
Dolle Communications

HydroPowered.org
StephenDolle.com

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Contact Dolle Communications
Contact Dolle Communications

Fun Web Site for Hydrocephalus features Super-Heroes and Art

Tribute to EMI Records and Godfrey Houndsfield for invention of the CT Scanner
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
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
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
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
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.
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
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
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
Hydrocephalus Awareness Month 2014
Stephen Dolle receives award at Costa Mesa Chamber event.
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
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
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
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
Incredible Hulk Inspires Kids and others with Hydrocephalus
The DiaCeph mobile phone app would improve greatly improve hydrocephalus care Worldwide. But the U.S. lags in mHealth development.
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. Feel free to CLICK and SAVE my contact JPEG card.

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Stephen Dolle
Dolle Communications
Email: contact [at] dollecommunications.com
Tel. (949) 6424592
Dolle Communications
HydroPowered.org

Stephen Dolle Headshot in a Suit
Stephen Dolle Headshot in a Suit

Drum Off for Hydrocephalus Awareness

Drumming workshop for balance and movement challenges in living with hydrocephalus
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
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 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
Drumming for wellness helps seniors and those facing chronic illness
Drum Circles make for great Children's Activity as young as age 3.
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.
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
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
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 or per the information below. Feel free to CLICK and SAVE my contact JPEG card.

Contact Stephen Dolle
Contact Stephen Dolle

 

 

 

 

 

 

 

 

Stephen Dolle

Dolle Communications

New HydroPowered.org Web Site to enable Open Source Sharing of Art & Designs for Hydrocephalus

The new HydroPowered.org web site has been updated to enable open source sharing of art & designs for persons & families impacted by hydrocephalus. Together with its HydroPowered.org Facebook group, followers will be able to upload and share their art & designs in an “open source” type setting.
http://www.hydropowered.org/HydroPowered.org.Open Source Art & Design

“Art can be posted or downloaded from the Facebook site, placed on clothing, or made into stand-alone pieces of art,” says Stephen Dolle, HydroPowered.org’s creator. “Technology can be designs of anything from shunt devices to mobile apps, and there’s no requirement it be related to hydrocephalus, only, the person/family submitting must be impacted by hydrocephalus.”

The second goal or mission, Dolle says, is to raise $100M for new “open source” technology solutions in the care and treatment of hydrocephalus. He says hydrocephalus today remains 25 years behind in comparative technological advances, and he believes this open source concept is the best way to move forward with innovation. Hydrocephalus is also the leading neurosurgical condition in children. The current status of surgical outcomes with hydrocephalus today with CNS shunts is entirely unacceptable! With these funds and new open source initiatives, we believe we can forever change the care and treatment of hydrocephalus.

Here also is the link to the group on Facebook:
https://www.facebook.com/hydropowered.org

Please contact me per the information below. Feel free to CLICK and SAVE my contact JPEG card.

Contact Dolle Communications
Contact Dolle Communications

Use of Barometric Pressure Data in Management of Migraine

Migraine headache can get you out of your routine
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
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.

Barometric Pressure Data.March 22.2014.jpg

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
Tel (949) 642-4592
http://www.dollecommunications.com

Hydrocephalus and NPH Monitoring by Stephen Dolle of Dolle Communications

Stephen Dolle, Neuroscientist & Drum Circle Facilitator
Stephen Dolle, Neuroscientist & Drum Circle Facilitator

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.

Brain Diagram of Ventricles often Enlarged in Hydrocephalus
Brain Diagram of Ventricles often Enlarged in Hydrocephalus

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
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

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 5 day 7 marker NPH hydrocephalus shunt monitoring form
Diaceph NPH hydrocephalus historical shunt outcomes flow chart
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

 

NPH Consult Report #2 on SlideShare.net

 

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
Url address graphic

NPH DiaCeph Monitoring Report #1 (as PDF file)

DiaCeph Hydrocephalus Monitoring Booklet
DiaCeph Hydrocephalus Monitoring Booklet

NPH Consult Report #2 (as PDF file)

DiaCeph Hydrocephalus Monitoring Booklet
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.
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
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
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
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
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
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. Feel free to CLICK and SAVE my contact JPEG card.

Stephen Dolle
Neuroscientist, mHealth Inventor & Drum Circle Facilitator
Tel. (949) 642-4592  contact[at]dollecommunications[dot]com
Hydrocephalus Survivor w/ 12 Shunt Revisions
DolleCommunications.com

Contact Stephen Dolle
Contact Stephen Dolle