Michael J Fox Site Post Parkinson's Plus Breakdown

A longtime friend and leader in the Parkinsonism community, Robin Riddle, shared some important news on her email newsletter.   She alerted Parkinson's Plus patients that there was a breakdown of the four main kinds of Atypical Parkinsonism written and posted on the Michael J Fox Foundation for Parkinson's Research website.

Mrs. Riddle, who also writes the Brain Support Network blog, announced this important news through her email list and pointed out that this is the first time such a complete and well defined explanation appears on the MJF website.  This represents for me a change in tone or emphasis in the MJF Parkinson's Foundation scope of interest.  

As one who has from the beginning been diagnosed with Parkinson's Plus, rather than Parkinson's Disease, I have had a hard time relating to the MJF organization, although Michael J Fox has been a great source of leadership and inspiration for me, personally.  The first book I read after realizing my diagnosis was similar to Mr. Fox's was his LUCKY MAN biography.  His honesty and openness about his experience as a front line actor in two very popular TV series and the Back to the Future movie franchise, and his coming forth as a patient diagnosed with P.D., were of great benefit to all who suffer with these degenerative brain diseases.

Robin Riddle CEO and Board of Directors for Brain Support Network

Now, Robin has let us know that there is some quality information posted on the MJF website.  By the way, Robin is the head of the organization known as the Brain Support Network, a group that plays a critical role in research to find answers and eventual cures to these devastating illnesses.   They seek brain donations from patients and their families in order to give this tissue to the Mayo Clinic to be studied, posthumously.  I am thankful for her work and that she and Karrie partnered to arrange for my donation to take place when such a time presents itself.  It is a process which involves some work, some emotional strain and a modicum of expense (a donation determined by the donor and not defined by a fixed amount) to be arranged.  I encourage you to consider doing what we have done because it is a process that will provide answers about the condition you or your loved one suffered from, as well as making a major contribution to the body of work researchers are putting together to find answers and solutions to these diseases.

Thank you, Robin, for being there to share information and leading the way in this important donation process leading to discoveries that will help those who come after us.

I am also grateful to Mr. Fox and the MJF Foundation for Parkinson's Research for making this educational information about Parkinson's Plus a priority on your website.  It means a lot to me and I am sure to others, as well.

Blessings, Patient-Online

The Blues Won't Let Me Go!

This is not a bummer, but rather a good thing.  The blues are a music style/genre that I have grown to love and enjoy since I decided in 2009 to make a goal of growing in my knowledge of and skills in writing, singing and playing the blues.  This includes the guitar and the mandolin, along with the vocal style.

My alternative blog is, My Blue Strat, and I am posting below my newest journal entry on that blog.  Follow this link to learn about my love for the blues and why I find this form of music a positive source of energy and expression.

http://mybluestrat.blogspot.com/2017/05/the-blues-wont-let-me-go.html

Time to Let it Sink in: Coriticobasal Syndrome

I took some time.  All of April to be exact, and then some.  Here it is May and I am thawing out my writing impetus after 5 weeks of writer's block.  After getting a new (November 2016) probable diagnosis of a disorder called Corticobasal Syndrome, a member of the Fronto Temporal Disorder family, I ran out of words to say, or write.

First, of all, I am very grateful to our great doctors-- our primary care doctor at the clinic, the various specialists who treat me for everything from choking/swallowing difficulty to severe eye pain, and up to and including the outstanding Movement Disorder Specialist/Neurologist that is working so hard to  find answers to my rare Parkinsonian disorder.

For years, I wrote on this blog (since 2006 with some breaks) details of my experiences, feelings, faith struggles, spiritual plateaus, and thorough verbal descriptions that defined and categorized all of the various Parkinson's Plus syndromes that I am similar to, if not experiencing.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. -- Galatians 6:9

Now, after all these years, I am at peace.  I have for years been defined as having Parkinsonism and one of the Parkinson's Plus syndromes, most likely Shy Drager. Shy Drager is known as Multiple System Atrophy and I have the hallmark symptom, low blood pressure upon rising from bed or getting up from a sitting posture.  This causes blacking our, loss of oxygen to the head and can be an hours-long condition where my neck and shoulders ache, my arms and upper extremities get a numbness and lack of feeling, and my strength is very limited, causing great fatigue.  This blood pressure issue gives pause to my neurologist and is the reason why in addition to Coricobasal Syndrome (Alien hand and Eye control/focusing/tracking issues) and Parkinsonism (tremors, stiffness, loss of balance, and many other symptoms), I am considered to possibly still have MSA.

My behavior, emotions, thought changes-- an area so personal to me that I can't discuss yet-- means that I am being looked at for Fronto Temporal issues.  FTD is scary.  I don't know what to think about it.  If I am confusing you, just imagine how confused I am.

All I can say is, I am beginning to want to share about these things.  I respect my physicians and want to give them the space and freedom to consider all the avenues and pursue the best truth that describes the need and leads to the best possible treatments.  My Deep Brain Stimulator is working for me and keeps me walking-- at least enough to use my walker.

Today, Karrie is taking me on a very nice outing to Ikea.  That sounds like a lot of fun.  This will require my wheelchair and mean that I will be dodging nice people all day long. It will be great to be out and part of the world for a time.  Just enough time to let it sink in again-- I may be disabled, but I am not grounded.  Not completely.  I have Coricobasal Syndrome:  a loss of cells in my basal ganglia on both sides enough to show up in my DaT scan results and cause the loss of body control that has put me in a walker and stollen my career.

After all this time, I don't have as much to say.  However, I am beginning to want to share again.  I will give it a try, very soon.  Meanwhile, I've got so much to do. I'm a father, a husband, a grandpa and a guitar player!  Life is beautiful, man! Stay tuned-- Patient-Online