drum off for hydrocephalus – DolleCommunications Blog

Drumming workshop for balance and movement challenges in living with hydrocephalus

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

Notre Dame Drumline Friday Afternoon Drummers Circle

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

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

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

My Story on HydroPowered.org

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

HydroPowered.org Share the Passion for Hydrocephalus

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

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

National Hydrocephalus Foundation (NHF)

NHF Logo

NHF PATIENT POWER Conference Agenda

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

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

OC Conference 2012 030.MOV

Drumming for wellness helps seniors and those facing chronic illness

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

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

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

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

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

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

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

Related Blogs and Information

Spread Awareness of Hydrocephalus on Rare Disease Day 2015

Cause Marketing Web Site for Hydrocephalus uses Super-Hero Theme

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

Hydrocephalus Monitoring Method Hopes to be new mHealth App

How the Internet is like one big DRUM CIRCLE

Contact me through my web site my information here.

Stephen Dolle

Dolle Communications

Welcome to my NPH and Hydrocephalus Shunt Monitoring Services

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

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

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

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

Dolle Communications Web Site – Hydrocephalus Monitoring

Brain Diagram of Ventricles often Enlarged in Hydrocephalus

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

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

Diaceph 5 day 7 marker NPH hydrocephalus shunt monitoring form

Diaceph NPH hydrocephalus historical shunt outcomes flow chart

DiaCeph Test MONITORING INSTRUCTIONS

DiaCeph Test MONITORING FORM

DiaCeph Test FLOW CHART

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

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

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

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

NPH DiaCeph Monitoring Report #1 on SlideShare.net

Diaceph hydrocephalus monitoring report.sample presentation from Stephen Dolle

NPH Consult Report #2 on SlideShare.net

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

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