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.
We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.
We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool. We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season) the beach.
We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors. They are also working to get certified as PWR (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so. The program was developed by Becky Farley who also developed the LSVT BIG program. The class was great and incorporated chair exercises along with standing exercises using exaggerated movements. You can read more about PWR here.
We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week. I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health. And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.
You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs. And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank). I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:
“I’m always preaching about how the studies prove that exercise is the only proven way to slow the progression of PD. If you are told there’s this miracle fix that can ensure your body works the way it does (or maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret? Well, it’s no secret, you just have to get up and move the more the better. If you say you “can’t” run anymore “try” walking. If you say you “can’t” do aerobics “try” water aerobics. “Can’t” handle impact on your feet “try” biking. Your balance is bad and you say you “can’t” because you’ll fall, then try a stationary bike with a good seat, or chair yoga!” (Read the entire post here)
So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website. The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool! Click on the Davis Phinney Foundation logo on the right to check it out.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.
We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool. We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season) the beach.
We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors. They are also working to get certified as PWR (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so. The program was developed by Becky Farley who also developed the LSVT BIG program. The class was great and incorporated chair exercises along with standing exercises using exaggerated movements. You can read more about PWR here.
We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week. I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health. And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.
You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs. And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank). I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:
“I’m always preaching about how the studies prove that exercise is the only proven way to slow the progression of PD. If you are told there’s this miracle fix that can ensure your body works the way it does (or maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret? Well, it’s no secret, you just have to get up and move the more the better. If you say you “can’t” run anymore “try” walking. If you say you “can’t” do aerobics “try” water aerobics. “Can’t” handle impact on your feet “try” biking. Your balance is bad and you say you “can’t” because you’ll fall, then try a stationary bike with a good seat, or chair yoga!” (Read the entire post here)
So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website. The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool! Click on the Davis Phinney Foundation logo on the right to check it out.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.
We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool. We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season) the beach.
We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors. They are also working to get certified as PWR (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so. The program was developed by Becky Farley who also developed the LSVT BIG program. The class was great and incorporated chair exercises along with standing exercises using exaggerated movements. You can read more about PWR here.
We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week. I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health. And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.
You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs. And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank). I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:
“I’m always preaching about how the studies prove that exercise is the only proven way to slow the progression of PD. If you are told there’s this miracle fix that can ensure your body works the way it does (or maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret? Well, it’s no secret, you just have to get up and move the more the better. If you say you “can’t” run anymore “try” walking. If you say you “can’t” do aerobics “try” water aerobics. “Can’t” handle impact on your feet “try” biking. Your balance is bad and you say you “can’t” because you’ll fall, then try a stationary bike with a good seat, or chair yoga!” (Read the entire post here)
So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website. The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool! Click on the Davis Phinney Foundation logo on the right to check it out.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
As part of our stay here in Florida, we became temporary members at a local Gym that provides PwP specific classes along with all the other amenities of a large gym. One of the classes they offer is Pedaling with Parkinson’s, a twice a week spin class specificly designed for PwP’s. The objective of the session is to cycle for 40 minutes, keeping your heart rate between 60% – 80% of your MHR (maximum heart rate), and keeping the cadence (RPM) between 80 and 90 RPM per minute.
In order to take the class, I had an hour long evaluation that covered, among many things, medical conditions other than PD, what PD symptoms I had, and how my balance was – almost made the 30 seconds standing on one foot! Then, after taking my resting heart rate and blood pressure, I spent 20 minutes on the spin bike, upping the resistance until I couldn’t maintain 80 RPM for a minute, which provided my MHR.
I managed to pass the tests so last Friday I joined a full class of 20+ PwP’s for my first forced march on a bike! After adjusting the bike, putting on the heart rate monitor and doing a light warm up spin (you know in the 60 – 80 RPM range) the instructor cranked up the music and off we went, upping the resistance while maintaining the cadence at 80 – 90 RPM for what seemed to be forever. OK maybe it wasn’t forever but it was a solid 40 minute workout, with brief slow downs for hydration before the next song came on. All of our data was captured on a computer which then projected our heart rate and the percent of MHR up on a screen in front of the room. In addition, the bike was equipped with a device showing our RPM, heart rate and % of MHR.
This program is based on research by Jay Alberts, PhD, at the Cleveland Clinic and a demonstration study by the Neuro Challenge Foundation here in Sarasota which have yielded promising preliminary scientific and anecdotal results. The studies have indicated that doing this twice a week helps create new pathways (neuroplasticity) in the brain and participants have reported a reduction in tremors, better balance and gait, regained sense of smell, and increased energy. I have been interested in doing this for some time and I’m glad I get the opportunity to participate while here as they also offer this class at the YMCA in Knoxville if I want to continue when I get home.
The Neuro Challenge Foundation also sponsors the three dance for PD classes we are attending while here along with many other activities for PwP and Care Partners. They provide a Parkinson Disease Resource Guide and offer a one on one Care Advisor Program to help PD Patients find the best treatment and support options available. An excellent resource for PwP in the Sarasota area and one of the reasons we like to come to this area. Speaking of dance classes, our Let Your Yoga Dance for PD class made the local paper, you can view the article here. We have a good time in all three classes and it certainly helps keep me flexible.
Oh, did I mention we caught up with Dale, Monica and grand daughters Angelina and Ariana in San Francisco? OK, maybe we were at Disney World’s Hollywood Studios and took advantage of the set. We had a great time with them in Disney World and here at the beach.
We continue to enjoy our beach time in between dance classes and time at the gym and I can’t believe our time here is half over already!
Don’t forget to sign up for MJF Trial Finder by clicking on that large orange button on the top right and then you might as well join Fox Insight by clicking on the logo to your right! Thanks.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
and it’s way past time for a catch up blog post. I think the last post of substance was about Giving Tuesday at the end of November, 2015! So this is my attempt to condense a couple of months of activity into one post. Not long after the Giving Tuesday post, we made an unscheduled trip to Traverse City, MI to help out Mara’s sister with her used book store. We have no retail experience and it’s been over ten years since I’ve worked a 40+ hour shift but we had a great time taking care of business. If you are in the Traverse City area, be sure and stop in at her store The Bookie Joint downtown just off Front Street. (yep, a shameless plug!)
We got home just in time to get ready for Christmas and enjoyed the holidays with our family and then it was time to start getting ready for THE BEACH! We arrived last Saturday and were awakened at 3am Sunday morning by the sounds of a tornado (I’ll be darned if it didn’t sound just like a train). Luckily no one in our complex was injured but a lot of the units had windows and screens damaged and a lot of cars suffered broken glass and other damage. We hadn’t planned on being part of the effort to prove the theory of global warning but we are thankful that no one was hurt and our unit and car were not damaged.
On the Parkinson’s front, I was appointed webmaster for the East Tennessee Parkinson’s Support Group and spent a lot of free time during December learning WordPress and upgrading the site to the latest version. When that wrapped up early in January I spent my free time updating the Tennessee Parkinson’s Disease Resource site with maps and adding new information.
Somehow I also managed to take an exercise holiday and I began to notice my symptoms were getting worse, particularly the brady kinesia (ridgity). Since we arrived in Florida, I have been walking at least an hour a day and we have signed up for two Parkinson’s dance classes We are also planning to sign up for additional exercise classes at the Neuro Challenge Institute, a great resource for Parkinson’s Patients in the greater Sarasota area. I am already noticing improvement which once again proves how important exercise is for PWP’s!
We also signed up for a weekly Let Your Yoga Dance class. We were introduced to Let Your Yoga Dance while at the Kripalu retreat in October 2013 and this class reunited us with instructor/founder Megha and Joel and Melissa whom we first met at the retreat and meet up with every year while in Sarasota. Our first class was yesterday and Megha had us doing deep breathing exercises, stretching and dancing in no time. It is a great class that not only provides exercise but brings ‘healing through joy’.
Coming up we will attend the Neuro Challenge Insitute annual Parkinson’s Symposium on Saturday where one of the topics to be covered is the Tasigna trial conducted at Georgetown University. Tasigna is a leukemia drug that appears to stop or reverse some of the PD symptoms during a small test involving 12 Parkinson’s patients. I am looking forward to hearing more about the first trial and the results and will provide more information in the next post.
So there you have it, a short version of a very busy couple of months. Oh, did I mention I am still wearing my smartwatch and providing data for the Fox Insight Trial? If you haven’t signed up you can do it here, and don’t forget to also sign up for Fox Trial Finder at the same time and join over 52,000 of us who have already signed up!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
