And I’m back!  I noticed that I didn’t mention anything in the last post about how my buddy Parkinson’s and I are getting along. Things are pretty much stable, still some arm stiffness and shuffling when I walk and the occasional balance problem.  I don’t have the sticky feet problem nearly as often nor the internal tremors so, all in all, things are OK.

As I have noted before, I follow many other blogs, websites, and Twitter accounts related to Parkinson’s, probably close to 50 if I took the time to count them all.  I have been planning to add a page with the list of who I follow to this blog and maybe that will happen one of these days soon, but remember, apathy is a non-motor symptom so don’t hold your breath. 🙂

One of the blogs I follow is Tremors in the Universe written by Robert Baittie.  In a recent post, Chapter 36 Whistle while you twerk,  he talks about another symptom of PD, micrographia and from there he… well here, I’ll let you read it yourself picking up where he defines micrographia:

“The symptom as it appears in association with Parkinson’s disease is called micrographia, and in handwriting or penmanship is characterized by abnormally small, cramped handwriting and/or the progression to continually smaller handwriting. It’s cause, according to the National Parkinson’s Foundation is attributed to a common feature of PD which is a slowing of movement, and feelings of muscle stiffness in the hands and fingers. Loss of automatic motion also affects the easy, flowing motion of handwriting. This can impact even simple writing taskssuch as signing your name.”

“Which started me thinking.”

“Parkinson’s disease is named after the English doctor James Parkinson, who published the first detailed description in An Essay on the Shaking Palsy in 1817.”

“In 1817”.

“Might there be any signatures of record prior to 1817 that show signs of a typical Parkinson’s style of writing?”

“Of what importance was that to me? Well my entire attitude around my diagnosis of Parkinson’s has been about succeeding with the disease and having and maintaining a positive attitude towards dealing with it. I was curious if there might be individuals who had continued to achieve and possibly even made a mark in history while in the midst of dealing with PD? At a time when they didn’t have today’s technology, support and treatments. Obviously this was all pure speculation because prior to 1817 it was not classified or known as Parkinson’s. But I was curious none the less.”

“The first thing I did was to Google micrographia thinking I might find a visual example of the malady that I could use for comparison to any earlier documents I might come across. And sure enough, in the Wikipedia Encyclopedia a writing example of a Parkinson’s patient.”

“The next step was to begin searching documents prior to 1817 that might offer a similar writing style”.

“Now I was not going to go about this by pure happenstance, on the contrary, I had a hunch and I had definite place in mind to start. There was one document in particular I wanted to take a look at. And sure
enough my hunch or maybe I should say my “intuition” was correct.”

Stephen Hopkins

“Here was my individual of notoriety that I felt had that characteristic signature at a time when the flourish of stylized and ornate signatures and penmanship were the art form of the day.”

“Here was a man among men. Stephen Hopkins. Born in 1707 and died in 1785 at the age of 78. He came from a prominent Rhode Island family and most definitely left his mark upon a nation. Not only did my initial
examination of the document serve to heighten my belief, but further readings of his biography removed all doubt. His own admission was proof enough for me.”

“In the summer of 1776, while holding his right hand with his left, saying, “although my hand trembles, my heart does not” Stephen Hopkins, a Rhode Island delegate to the First Continental Congress,
signed the Declaration of Independence.”

“It gave me tremendous pause to sit and look at that Declaration of Independence and those signatures and to think about the thoughts that must have been going through Stephen Hopkins mind. Not only could I
imagine he had a sense of uncertainty and fear for what the future held for our new country at that time, but he was simultaneously dealing with the uncertainty of and concern for his own health. He held the same
questions in his mind then about his health, that millions still hold to this day. What is causing this? What can be done?”

“And as I reread those simple words of Stephen Hopkins, a number of thoughts came to mind. First, I felt a tremendous amount of respect for the man because he was not afraid to share with his friends and
colleagues the disease that afflicted him. Especially at a time when there was no explanation he could offer for what ailed him. He openly called attention to and acknowledged his tremor and in doing so said he
was not ashamed of it. Second was that he had not allowed his tremor or the disease to limit him.  He had continued on with his passion for his work. But most profoundly to me was the double meaning I took from the words as a whole. While obviously in one context he is referring to our young nation and “though his hand trembles” while signing this Declaration of Independence “his heart does not” because he believes
this to be the right direction for his country, the other context it speaks to for me is the disease of Parkinson’s itself. The words make the analogy of how I have felt all along. “Although my hand trembles, my heart does not.” It’s that strange sense of the positive and knowing that although I have been diagnosed with Parkinson’s, everything I feel in my heart tells me there is nothing to fear and I will be alright. That I can and will deal with whatever it brings me.”

“Over 230 years later since the documents signing technology is most definitely moving at a rapid pace, and the research being done toward finding a cure for Parkinson’s is as well. But to continue that work and
to hasten the success, additional funding is always needed. Volunteers and Foundations continue to spearhead the vast majority of the fundraising efforts but more needs to be done.”

“Given that, I find it extremely ironic that this would be the example of the signature I would find. A statesmen, a member of the First Continental Congress. Because additional support and funding from our government is what is needed to keep progress moving forward and ultimately finding a cure. And so I would like to ask everyone reading this to take the opportunity to write your Congressman with a steady hand to request that they show the heart of our founding fathers and support increased funding for Parkinson’s research. (emphasis added)

Reblog it. ReTweet it. Do it for your self. Or someone you love.

More to come.
Tremors in the Universe Copyright © 2014 by Robert Baittie”

To find out what prompted Robert to research micrographia, read the complete post of Chapter 36 here.  I think you will find it interesting and I highly recommend reading some or all of his other ‘Chapters’.

What a great statement “although my hand tremors, my heart does not” and as the Michael J Fox Foundation says “Our challenges don’t define us. Our actions do”  We can and will deal with whatever Parkinson’s throws at us on our way to finding a cure.

I also agree that we need to continue to urge Congress to support increased funding for Parkinson’s research.  In that vein,the Parkinson’s Action Network (PAN) is sponsoring a Parkinson’s Day of Action on February 26th. They ask that you contact your Representatives and ask for their support.  They have provided information here on how to contact your representatives, some sample statements you can use and links to why we need more funding for research.  I urge you to join me and PAN on Wednesday, February 26th and contact your Congressional Representatives.

As I write this post, we are watching it snow as we are under another winter storm warning for the next couple of days, just hoping it clears up here and in Atlanta by Friday so we can start our trip to what I hope is a warm Florida.  We are looking forward to the trip and a chance to meet up with  a couple that we met during the Kripalu retreat.  ‘See’ you next week.