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.
When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.
Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.
We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!
July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!
Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.
This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.
I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.
Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.
We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!
July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!
Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.
This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.
I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.
Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.
We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!
July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!
Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.
This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.
I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!
As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.
The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)
After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.
Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing
Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.
And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.
Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.
And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Yes,we are on the road again. We are working our way to San Francisco to attend a wedding which will also be another 3M reunion. I say working our way because we left home at 8:45 AM for a 10:50 flight to Houston for our connection to arrive in San Francisco around 5pm. But the Houston flight was delayed and we would miss our connection. Sam, a very helpful United employee, was able to get us on a US Air flight to Philadelphia leaving at 3pm and connecting to a San Francisco flight arriving at 9pm.
So, with plenty of time to kill, we took a walk around the airport and on the way back to our gate I see that the Philadelphia flight was delayed and we would again miss our connection! So back to Sam at the United desk where they were able to get us on a 3:55pm US Air flight to Charlotte for a connection arriving in San Francisco at 8:30.
With more time to kill, we decided to get some lunch and on the way back to the gate we see the Charlotte flight is delayed 30 minutes! This meant,if we left at the new scheduled time, we will have 20 minutes to change terminals. A small challenge for me and Dr. Parkinson but all that walking we have been doing paid off and we are in the air, bouncing our way to San Francisco.
Once we get there,we will have a new challenge,finding the little house we are renting in Bolinas, north of San Francisco,in the dark!
Well it is the next day and we are sitting in the little house we rented looking out at the ocean as you can see in the picture. We finally arrived here around midnight and this morning we took a nice walk down to town for some breakfast and a walk on the beach. Good times, good times.
After the wedding and 3M reunion we are going to Sonoma for a couple of days where we will meet up with son Ryan and his wife Sarah for some wine and beer tasting and probably some fine dining. More good times.
This week I finally completed the long promised list of blogs and bloggers I follow. Click on the tab at the top of the page and check it out. Next I hope to work on the post about exercise. Last week the results of a longitudinal study were released showing the benefits of exercise for Parkinson’s patients. Here is a portion of the press release:
SAN DIEGO – Regular exercise and increasing physical activity is associated with a slower decline in quality of life in Parkinson’s disease (PD) patients, according to a study released today at the 19th International Congress of Parkinson’s Disease and Movement Disorders. This study evaluated 2,940 patients from 20 sites affiliated with the National Parkinson Foundation Quality Improvement Initiative. The cohort was assessed using the Parkinson’s Disease Questionnaire (PDQ-39), and patients were measured at baseline, 1 year, and 2 year follow up appointments. Those who were classified as non-exercisers at baseline and began to exercise after their initial visit had significantly less worsening of PDQ-39 than non-exercisers. Ultimately, the study found that increasing physical activity greater than 2.5 hours of exercise per week is associated with a slower decline in total PDQ-39 scores.
Michael Okun, Professor of Neurology at the University of Florida Center for Movement Disorders and Neurorestoration states, “This study makes clear that everyone with Parkinson’s should be exercising. This longitudinal study of patients selected without exclusions shows that patients suffer from delaying starting their exercise program. It doesn’t seem to matter what they do, they benefit from just getting up and out and from moving.” Okun adds, “This study adds to mounting evidence that exercise is good and sooner is better than later.”
I can certainly attest to the benefits of exercise and we are trying to average at least 5 hours a week so maybe I’ll get double the benefit! Hopefully that post won’t take as long as the blog list! In the meantime, check out some of the blogs on my list while you are waiting for my next post and don’t forget to sign up for Fox Trial Finder and the Fox Insight trial. Remember, they need control subjects too, not just Parkinson’s patients so sign up!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
