..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist. A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses. A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit. He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay.
Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.
I am encouraged by the progress of PD research. New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’. Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure.
Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting. Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium. With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.
I am thankful for the support of family, friends and readers during the past eight years. Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD. Thank you!
This is my eighth World Parkinson’s Day and my 7th post on the subject (skipped 2018). You can read my earlier posts by selecting the Archives tab above and then Apr to view the post for that year. If you did that, you would see posts ranging from reporting on the annual Oak Ridge PD walk to ranting about awareness for the other 11 months of the year. In between are posts about cycling in the lobby of the YMCA, the Unite for PD campaign and quotes from other bloggers.
Last year’s post was a review of the book Ending Parkinson’s. The authors of this book have continued to impact Parkinson’s awareness with webinars and the Give a Dime about PD campaign discussed in last month’s post. You can find out more about the authors, the book and the movement to end PD at https://endingpd.org/ The book is now available in paperback from Amazon, Indie Bound and Barnes & Nobel with all of the proceeds going to ending PD. If you cannot afford to purchase a copy, email them at info@endingpd.org and they will send you a copy.
The book has inspired the creation of the PD Avengers group which I have also discussed in an earlier posts. If you haven’t joined PD Avengers, please click on the link to the right and support the quest to END PD. This is not a charity nor are they affiliated with any one organization. The goal is to unite 50 million voices worldwide to build a sense of urgency to END PD. If you are already a member, please promote the group to other PwP’s, family members and friends. We are almost 3000 strong now, let’s double the number by the end of Parkinson’s Awareness month 2021!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
In 1938 FDR and millions of americans led a march of dimes to end polio. On March 16th, PD Avengers and Ending PD will kick off We Give a Dime about Parkinson’s with a goal of mailing over 10,000 Red Letters to the Whitehouse asking for Presidential support to end PD now. In the book Ending PD (see my review here) one of the goals is to advocate for increased awareness and the campaign to end Polio was one of the examples of how we could meet that goal. Please join us in this effort. You can find out how to get your Red Card and how to watch the webinar on the 16th here. You can join PD Avengers by clicking here. Ask your family and friends to join too!
After returning to Sarasota 4 weeks ago we have been ramping up the exercise routine. The day after our return I was off to the YMCA for the pedaling for Parkinson’s class while Mara did weight training. Later we met with one of the gym instructors to get instructions on the use of the equipment and his recommendations for what I should work on to improve my PD symptoms. Then we met with a wellness coach to go over all of the classes they offer at the YMCA and which ones she thought would benefit us the most.
The result is we have added 7 more hours of exercise to the 2 hours of pedaling and our hour of PD in Motion for a total of about 10 hours a week. Our classes include Tai Chi, Yoga, Fitness Fundamentals and an aerobic fitness class. Then yesterday, we added two weeks of adult beginning tennis lessons in November since we bought tennis rackets when we got here in June thinking we would take advantage of the courts here in the Village Walk complex where we are renting.
So now the question – does more exercise = more benefits for PD patients or can I overdo it? I am trying to pay attention to how well I perform each exercise class and, more importantly, will it impact how well I do with the pedaling class. There is a correlation between maintaining 80 plus RPM and pushing my heart rate into my training zone for at least 30 minutes twice a week and a reduction in my symptoms, so this is the exercise that has to be first. Of course, the way it worked out I have two other classes on the same day as the pedaling,one before and one after. So far I have noticed some impact on the pedaling but I am hopeful that, as my overall fitness improves, the impact will diminish.
In our spare time :>) we have been to concerts at the Selby Botanic Gardens, went to the Florida Studios Theater for an evening of Improv, gone to the beach and attended a concert here in the Village Walk. During that concert we discovered that a couple from our PD in Motion Class are also renting in Village Walk – it certainly is a small world!
Oh, I did find some time to do a little fishing in the lakes around Village Walk and caught a few nice size small mouth bass. A few days ago, while fishing with some light spinning gear, I caught a trophy large mouth! After about ten minutes I finally landed the fish and luckily a couple came by and took some pictures or this would have just been another fish story! I think this might be the biggest fish I have ever caught, certainly the largest bass.
While I have your attention I want to pitch SURE-PD3, a clinical trial that is recruiting right now. This is a phase three trial recruiting 270 subjects in 60 locations across the US. The primary objective is to determine whether a moderate elevation in serum urate over 2 years slows clinical decline in early PD. To learn more about the trial, click here or on the link on the right to see the presentation and get a link to the Fox Trial Finder description with a list of the trial sites.
Well, off to exercise!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
After returning to Sarasota 4 weeks ago we have been ramping up the exercise routine. The day after our return I was off to the YMCA for the pedaling for Parkinson’s class while Mara did weight training. Later we met with one of the gym instructors to get instructions on the use of the equipment and his recommendations for what I should work on to improve my PD symptoms. Then we met with a wellness coach to go over all of the classes they offer at the YMCA and which ones she thought would benefit us the most.
The result is we have added 7 more hours of exercise to the 2 hours of pedaling and our hour of PD in Motion for a total of about 10 hours a week. Our classes include Tai Chi, Yoga, Fitness Fundamentals and an aerobic fitness class. Then yesterday, we added two weeks of adult beginning tennis lessons in November since we bought tennis rackets when we got here in June thinking we would take advantage of the courts here in the Village Walk complex where we are renting.
So now the question – does more exercise = more benefits for PD patients or can I overdo it? I am trying to pay attention to how well I perform each exercise class and, more importantly, will it impact how well I do with the pedaling class. There is a correlation between maintaining 80 plus RPM and pushing my heart rate into my training zone for at least 30 minutes twice a week and a reduction in my symptoms, so this is the exercise that has to be first. Of course, the way it worked out I have two other classes on the same day as the pedaling,one before and one after. So far I have noticed some impact on the pedaling but I am hopeful that, as my overall fitness improves, the impact will diminish.
In our spare time :>) we have been to concerts at the Selby Botanic Gardens, went to the Florida Studios Theater for an evening of Improv, gone to the beach and attended a concert here in the Village Walk. During that concert we discovered that a couple from our PD in Motion Class are also renting in Village Walk – it certainly is a small world!
Oh, I did find some time to do a little fishing in the lakes around Village Walk and caught a few nice size small mouth bass. A few days ago, while fishing with some light spinning gear, I caught a trophy large mouth! After about ten minutes I finally landed the fish and luckily a couple came by and took some pictures or this would have just been another fish story! I think this might be the biggest fish I have ever caught, certainly the largest bass.
While I have your attention I want to pitch SURE-PD3, a clinical trial that is recruiting right now. This is a phase three trial recruiting 270 subjects in 60 locations across the US. The primary objective is to determine whether a moderate elevation in serum urate over 2 years slows clinical decline in early PD. To learn more about the trial, click here or on the link on the right to see the presentation and get a link to the Fox Trial Finder description with a list of the trial sites.
Well, off to exercise!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
After returning to Sarasota 4 weeks ago we have been ramping up the exercise routine. The day after our return I was off to the YMCA for the pedaling for Parkinson’s class while Mara did weight training. Later we met with one of the gym instructors to get instructions on the use of the equipment and his recommendations for what I should work on to improve my PD symptoms. Then we met with a wellness coach to go over all of the classes they offer at the YMCA and which ones she thought would benefit us the most.
The result is we have added 7 more hours of exercise to the 2 hours of pedaling and our hour of PD in Motion for a total of about 10 hours a week. Our classes include Tai Chi, Yoga, Fitness Fundamentals and an aerobic fitness class. Then yesterday, we added two weeks of adult beginning tennis lessons in November since we bought tennis rackets when we got here in June thinking we would take advantage of the courts here in the Village Walk complex where we are renting.
So now the question – does more exercise = more benefits for PD patients or can I overdo it? I am trying to pay attention to how well I perform each exercise class and, more importantly, will it impact how well I do with the pedaling class. There is a correlation between maintaining 80 plus RPM and pushing my heart rate into my training zone for at least 30 minutes twice a week and a reduction in my symptoms, so this is the exercise that has to be first. Of course, the way it worked out I have two other classes on the same day as the pedaling,one before and one after. So far I have noticed some impact on the pedaling but I am hopeful that, as my overall fitness improves, the impact will diminish.
In our spare time :>) we have been to concerts at the Selby Botanic Gardens, went to the Florida Studios Theater for an evening of Improv, gone to the beach and attended a concert here in the Village Walk. During that concert we discovered that a couple from our PD in Motion Class are also renting in Village Walk – it certainly is a small world!
Oh, I did find some time to do a little fishing in the lakes around Village Walk and caught a few nice size small mouth bass. A few days ago, while fishing with some light spinning gear, I caught a trophy large mouth! After about ten minutes I finally landed the fish and luckily a couple came by and took some pictures or this would have just been another fish story! I think this might be the biggest fish I have ever caught, certainly the largest bass.
While I have your attention I want to pitch SURE-PD3, a clinical trial that is recruiting right now. This is a phase three trial recruiting 270 subjects in 60 locations across the US. The primary objective is to determine whether a moderate elevation in serum urate over 2 years slows clinical decline in early PD. To learn more about the trial, click here or on the link on the right to see the presentation and get a link to the Fox Trial Finder description with a list of the trial sites.
Well, off to exercise!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We recently attended our second Grand Challenges in Parkinson’s research conference hosted by the Van Andel Research Institute in Grand Rapids, MI. Again this year The Cure Parkinson’s Trust (UK) and Parkinson’s Movement(UK) sponsored the Rallying to the Challenge meeting which is conducted in conjunction with the research conference and provides an opportunity for researchers, patients and caregivers to exchange information. The theme for this year’s Rally was “Outcomes and Measures, a new look at Measuring Parkinson’s” and, as you will see, we had a very full two day agenda.
Tom Isaacs, co-founder of the Cure Parkinson’s Trust, opened our portion of the meeting saying that together we are making a seismic shift for better research, research that includes the patient and the patient’s needs. As a result of last years Rally a ‘Clinical Trials Charter’ (click here to view the charter) was developed as a cooperative effort by patients and researchers. A UK multi-center clinical trial has adopted the charter for their research which will provide a real-world test and a stepping stone to wider adoption. We were amazed to see how our efforts from just a year ago have paid off in the cooperative development of this charter by patients and researchers. (Read the post from last year here)
Tom then discussed this year’s Challenge – How do we improve outcomes and measures in clinical trials? The emphasis again this year was on improving the patient experience and introducing patient centered change to the research process. In addition we will discuss how data gathered from new technology, (wearable sensors, smartphone apps, etc) can provide new measures and improve some of the current measures.
Jon Palfreman, PwP and author of the recently released “Brain Storms – The Race to Unlock the Mysteries of Parkinson’s Disease” pointed out that the Unified Parkinson’s Disease Rating Scale (UPDRS) is primarily subjective and provides only a snapshot of the symptoms you are having when administered, usually 1 or 2 times a year during your Dr. visit. Ideally, with the advent of wearable sensors and other technology, you should be able to provide a picture of your symptoms for the entire period between Dr. visits and get real time feedback yourself.
Dr. Soania Mathur and Dr. Jon Stamford reviewed the results of this year’s survey about the symptoms of PD which have the most important impact quality of life. Interestingly, out of 492 responses to the survey not one respondent listed their top five symptoms in the same order. In fact, if you look at this slide from the final presentation, I count 28 symptoms that were brought up when answering the question “What symptoms most affect your quality of life?” This slide certainly points out that PD is truly different for each of us.
The top symptoms in both categories were put into smaller groupings and we broke out into focus groups to discuss how to improve measurement of our set of symptoms. Every focus group not only developed ideas for measuring symptoms, but also came up with tips and tricks for dealing with the issue, for example walking backwards to relax dystonia of the foot.
The next morning, we had an almost overwhelming number of presentations about new technological devices that will help measure PD symptoms when on or off medication. Presenter’s included Ken Kubota from Michael J Fox Foundation (Fox Insight Wearable Trial), Anupam Pathak Ph.D. from Google (the Lyft spoon), Bruce Hellman (uMotif Smartphone app now available in the UK and coming soon to the US and Canada) and Caroline Tanner (mPower also a smartphone app developed from the SmartPhone PD clinical test I participated in)
We also had presentations from a Davis Phinney Foundation representative about a social networking program they are developing, one from Peter Schmidt of NPF about their Parkinson’s Outcome Project (another one I am participating in) and from Eli Pollard executive director of World Parkinson’s Coalition about PowerThroughParkinson’s, a program they are bringing out with the Brian Grant Foundation that encourages PwP to commit to exercise and eat right.
Day Two also included a presentation from the renowned Parkinson’s Doctor and researcher Bas Bloem from the Netherlands about Parkinson’sNet, a program he helped develop in the Netherlands 10 years ago and which has been implemented in LA area and soon in Grand Rapids. ParkinsonNet has one goal: to guarantee the best possible care for people suffering from Parkinson’s Disease.The program has been extremely successful in providing expert care while also reducing costs.
We then reconvened with the researchers and Tom Isaacs and other members of Parkinson’s Movement made a presentation of the results of our meeting and the need for patient involvement in the development of measures that would be the:
Right Measure – developed with the end user as a partner
Right Person – measure what is important to the person
Right Situation – don’t forgot off periods and how PD changes
In addition to meeting old friends and making new ones, we also enjoyed the exhibition of photos by Norwegian Photographer Andres Leines entitled “This is Parkinson’s”. Andres has early onset PD and has been taking pictures of other EOPD patients to point out that Parkinson’s is not just tremors and doesn’t just effect seniors. You can view some of the photos in this excellent YouTube video.
And finally, the Michael J Fox Foundation just announced that the Fox Clinical Trial Program has exceeded 50,000 registered volunteers! In case you’re not one of us, click on the big shiny button at the top of this page and sign up! Thanks.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
No not sausage links, website links! I thought I would devote this post to what’s going on in the Parkinson’s world. As you know I follow a number of other Parkinson’s blogs and here are a few items of interest from month or so, click on the link to read the entire post (will open in a new tab).
Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s. Inosine is a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression. The trial will start early next year in 60 sites.
Parkinson’s Psychosis Drug One Step Closer to FDA Approval Acadia Pharmaceuticals announced that it has submitted a New Drug Application to the FDA seeking approval for its drug Nuplazid (the compound pimavanserin) for the treatment of psychosis associated with Parkinson’s disease (PD). Current drugs used to treat PD psychosis have safety concerns and serious side effects for PD patients. A Phase III study showed the drug significantly reduced psychosis compared to placebo without worsening motor function. The study also showed the drug was safe and well tolerated.
How to Find the Right Dr Some excellent suggestions from the Parkinson’s Community on linking up with the right Doctor for PD treatment. My recommendation – if possible, link up with a Movement Disorder Specialist.
10 Breakthrough Therapies for Parkinson’s Disease The NPF Medical Director, Dr. Michael Okun, has published a new book covering new therapies for PD. I purchased a copy the day it was released and it is an excellent book, as was his first book, “Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease”. He has an excellent writing style and there are chapters covering new drugs (released and in the pipeline), effects of exercise, coffee, tea and Marijuana, new DBS advances and stem cell therapies among others. I highly recommend both of his books.
How Do I Know If I’m Doing the Right Thing When I Exercise? A post from PD Gladiators, an Atlanta based non profit devoted to combating PD with vigorous exercise. There has been a lot of emphasis on the benefits of exercise and this post discusses what exercise is optimal and how often you should exercise.
Delay the Disease, an Ohio based exercise program, is offering the Handwriting Challenge This program involves doing four simple exercises every day for 12 weeks. The exercises should take about 10 minutes to complete and are designed to test a theory they have that large muscle exercises will improve motor dexterity including micrographia (tiny handwriting). Every three weeks you write out the same sentence with the hope that your handwriting improves. Even if it doesn’t the exercises can’t hurt!
What’s It Like Having PD An excellent post by Bruce Ballard who blogs as Parking Suns. Those of us with PD will agree with these ideas to simulate PD for people who don’t have PD. I found numbers 1 and 2 an accurate description of what it feels like without medication, I’m sure you will find a few that match your symptoms too.
Coming up, Mara and I will be attending the second “Rallying to the Challenge” event organized by the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids, MI at the end of September. I wrote about the first meeting here and this years meeting will center on how to introduce new technology and additional personalized patient-centric measures into clinical trials. We are looking forward to catching up with members of our Global support group, meeting new members and enjoying the ArtPrize festival in downtown Grand Rapids.
OK, if you have followed every link in this post, you have a bunch of tab’s open and your browser is getting ready to explode so I’ll stop with a quick reminder, sign up for Fox Trial Finder (click on the button above and open one more tab).
“It does not matter how slowly you go as long as you do not stop.” – Confucius
