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.
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.
Or maybe it should be a Mish Mash? how about a Mashup? Anyway, this is a post of odds and ends I have been doing or reading about since my last post. We arrived home from Florida just in time to get caught up in the snow and ice and cold a couple of weeks ago and last week and this week so we are excited to leave soon for our regularly scheduled February beach visit. While home we have kept up the exercise on the bike, walking the few days we could, and doing Tai Chi. I purchased the DVD recommended by the National Parkinson’s Foundation and we have really enjoyed it. The fluid movements seem to be helping with flexibility and balance and the QiGong warmup exercises stretch a few muscles I haven’t been using much this winter 🙂
I was excited to see the announcement last week that The Michael J. Fox Foundation for Parkinson’s Research (MJFF), the Alzheimer’s Association (ALZ),and The W. Garfield Weston Foundation have joined together to announce a collaborative effort to stimulate analyses across the Alzheimer’s disease (AD) and Parkinson’s disease (PD) research enterprises. This will build on recent evidence suggesting substantial overlap between AD, PD, and other neurodegenerative diseases pathologically, but also potentially biologically. They will be able to utilize two large biomarker databases, the Alzheimer’s Disease Neuroimaging Initiative (ADNI) and the Parkinson’s Progression Markers Initiative (PPMI), for new research ideas. I hope this collaboration produces benefits for both PD and AZ current and potential patients.
Another collaboration recently announced was the formation of the Alliance of Independent Regional Parkinson Organizations (AIRPO). AIRPO is a consortium of regional independent nonprofit organizations, with the shared goals of finding a cure for Parkinson’s and supporting those who live with the disease. AIRPO aims to enrich programs available to the Parkinson’s disease community by encouraging collaboration, leveraging organizational strengths and maximizing efficiency among its founding member organizations, which include: Houston Area Parkinson Society,Michigan Parkinson Foundation, Northwest Parkinson’s Foundation, Parkinson Association of the Carolinas and Parkinson Association of the Rockies. The Parkinson’s Disease Foundation offers administrative support to AIRPO.
I belong to a ‘virtual’ support group site called Patients Like Me and one of the things they do is conduct research in connection with research groups. Recently they started a study with the objective of being able to monitor disease progression over the phone. I am a participant in the study and will be interested to see if it is possible. So far I was required to fill out a survey then called an 800 number and followed the instructions to record a voice segment, quite similar to the test I received in Florida last month. More information about the study has been published here.
I also started a genetics for beginners online course at Udacity.com. I have received the results of my DNA test from 23andme.com and decided I needed to increase my knowledge to fully understand the results. The course has been challenging and I just finished the quiz for lessons 1 – 4 (they didn’t say there would be a quiz!) I like the instructors and the online format has been great, they have come a long way since the last online course I took back a decade or two ago. Interesting stuff.
Well enough for this post, as the title suggests, there will be at least a Part Two which I hope to post before we leave for Florida on Friday so stay tuned.
Last week Dr Soania Mathur, whom I follow on Twitter, posted an excellent article, “10 Lessons I’ve Learned Living With a Chronic Disease” , on The Huffington Post. Dr Mathur was diagnosed with Early Onset PD 16 years ago at age 27 and in the post she discusses 10 lessons she has learned from facing the challenges of living with a chronic disease. But as she points out in the opening “Each of us is challenged in some way, be it in our health, our finances, our occupations or our interpersonal relationships, and many of the same principles that I learned on my particular journey are hopefully relevant regardless of the challenge you are facing.” I know that I found them extremely applicable for my PD journey and I think you may find one or two (or maybe 10) that will be relevant for you too. Click here to read Dr Mathur’s post.
Hard to believe the year is almost over! It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule. In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.
Hard to believe the year is almost over! It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule. In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.
Hard to believe the year is almost over! It has been a busy couple of months but I hope to catch up soon and get back to a somewhat regular posting schedule. In the meantime, we hope everyone has a great holiday and we are looking forward to the new year and more progress in the search for a cure.
Tuesday, December 1st is Giving Tuesday. Black Friday is over and Cyber Monday is almost over and Tuesday will be a great opportunity to take some (or all) of the money you saved this weekend and give back by making a donation to a Parkinson’s Disease organization or another cause of your choice. As in past years, many charitable organizations have a matching plan that will double your Giving Tuesday donation for double the benefit.
In case you need a little inspiration, I am reposting the following article “What is a Parkie? And Why are They so Expensive?“. This article was written by Alan Zimmerman vice president of the East Tennessee Parkinson’s Support Group and posted on their website, PK Hope is Alive . Alan is a strong and active advocate for Parkinson’s research and education. In addition to being Vice President of the group, he is the Assistant Tennessee State Director for the Parkinson’s Action Network (PAN) and a member of the Parkinson’s Disease Foundation (PDF) People with Parkinson’s Advisory Council.
Take some time on Tuesday and support the cause of your choice, There is a lot of exciting news on the research front and our donations can make a difference! Happy Holidays!!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
WHAT IS A PARKIE? AND WHY ARE THEY SO EXPENSIVE?
by Alan Zimmerman
Parkies are expensive devils. How does $25 Billion per year in the US sound to you? Not only that,we discover another 60,000 Parkies each year, right here in good old America. That number that is guaranteed to rise. And, each Parkie spends about $2500 per year trying to be less Parkie with an assortment of medications and untold more on supplements.
So, what then is a Parkie? It is what people with Parkinson’s disease call each other. Yep, the term is pretty much reserved for those in the Parkie club. They would rather be known by everyone else as people with Parkinson’s (PWP).
I know that you know someone who is a PWP. You may even have a relative with PD. You have seen them taking short steps and all bent over and very stiff and slow, or maybe they are using a walker to get around or perhaps they shake uncontrollably. Maybe you can’t hear or understand them when they talk. Perhaps you, nor they can read their handwriting. The list goes on and on.
Who gets this disease? Men are slightly more likely and most people are in their 60’s when diagnosed. But, about one in ten are 45 or under. By the time your symptoms are bad enough to be diagnosed, one has already lost more the 60% of their dopamine. You see, that marvelous thing called a brain compensates until it no longer can. Unfortunately, that is not the blessing it seems to be. As more interventions are developed, the sooner the diagnosis, the better.
Wait! We have new terms: diagnosis and dopamine.
Let’s take “diagnosis” first because most everyone has had at least one of those. In the case of Parkinson’s there is no definitive way of diagnosing except by physical exam. And, it really needs to be done by a neurologist who specializes in movement disorders. There is no blood test or scan that will determine for sure that the monster called PD has attacked.
What’s “dopamine?” It is a chemical found in the brain. What does it do? Lots of things that we know about and probably some yet to be discovered. For one, it is a communicator. Somehow it signals the muscles to do whatever the brain tells them to do. It also has something to do with mood, pleasure, depression and many other important functions.
What causes this PD thing? Nobody knows for sure but most scientists believe it is probably a combination of genetics and something in the environment, like heavy metals, toxins, or pesticides that trigger the beginning of the disease. That is pretty much where science is. OK, so where does it start? Nobody is sure where exactly but some of the latest thinking is that it starts in the gut or maybe even the intestines.
So, bottom line, what is the cure? There isn’t one. It just gets worse over time as more brain cells die. OK then, what is the treatment? Mostly, at this stage in modern medicine, only symptoms can be treated. A few things may slow it down like exercise programs.
We also have this thing called Deep Brain Stimulation (DBS). Hold on, what’s that? It may scare you if I tell you but here goes. DBS is where a PWP has one or preferably two holes drilled in the scull. Then you insert electrodes into certain places in the brain. Then, you attach all that to a battery which is eventually buried into your upper chest. Oh, I forgot to tell you. Usually the patient is awake when those electrodes are being put in place. Why? So that the neurosurgeon can get feedback from the PWP.
So, I guess we need more research. There is a bunch going on world-wide, but we could always use more. Researchers eat and have families and require laboratories. What that means is that research has a price tag. What a price tag means is that more donations are required.
What else is needed? More movement specialist physicians for one. There are not enough now and certainly too few going to school while the Parkie population increases. So, we need to encourage doctors to devote an extra two years of their life learning the intricacies of movement. Guess what? That too carries a pretty hefty price tag. So, we need more scholarships which means we need more donations yet again.
So, let’s review. People with Parkinson’s are growing in numbers rapidly. The disease is progressive and degenerative. So far, we can pretty much treat the symptoms only. But, through massive research, we believe that disease altering therapies are going to become a reality pretty soon. What is pretty soon? Maybe 5-10 years. But, that only happens with support for research, i.e. donations.
Just a quick post wishing everyone a Happy Thanksgiving from Seattle. I have much to be thankful for this year including:
making a change to a Movement Disorder Specialist who recommended a medication change that resulted in a great reduction of my symptoms;
and that improvement allowed me to increase my exercise time which also helped to reduce rigidity and increase my mobility;
and the increased mobility gave us a chance to travel to visit family and friends across the country;
and I got to fish almost every day I was home without having to sit down after 15 minutes to rest!
But most of all I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my wandering posts. I hope I have provided information of value to PwP’s and others through this blog and the Tennessee Parkinson’s Resources site that we started this year.
