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 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.

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
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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
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.

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.

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 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.

My 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 (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
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.

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

Mobile Sound Level apps Helpful in Managing Sensory Processing Disorder

Android Apps Image
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
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
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.
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
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
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 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.

(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
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. 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

 

 

 

 

 

 

 

 

Contact Dolle Communications
Contact Dolle Communications