One of the big advantages to being in Sarasota has been the ability to exercise. I am able to exercise at least an hour a day, 5 – 6 days a week which has helped me keep my PD symptoms in a holding pattern. We try to play tennis everyday when possible, and I continue to do Pedaling for Parkinson’s twice a week. In addition we go spend an hour a week at PD in Motion, Let Your Yoga Dance, Easy Yoga and Fundamentals of Movement classes. When time permits, we also try to spend at least one hour a week at the gym with the weight machines pumping some iron!
While all of this exercise has helped me to slow my PD progression, I started noticing that I would be walking with my arms out front and I would become more rigid about 30 – 45 minutes before my next medication dose was due. So, after slightly over two years on the same dose, I contacted my neurologist and we agreed to increase my Sinement from 1 to 1.5 tablets 4 times a day. It’s been about a week since the change and I have already noticed reduced rigidity and the arm swing is back to almost normal, and I am hopeful that I can go another 2+ years before I have to change it again.
We have really enjoyed playing tennis. I had never played before we took lessons in December and was surprised at how much I enjoy it. We took more lessons in January and Mara attends a tennis clinic put on by Barb, our superb instructor, twice a week while I am pedaling then we practice most afternoons at the courts here in the complex for up to an hour and a half. We are also part of a group that meets once a week for doubles where we rotate in and out of the games depending on how may players show up. I’m sure we will be on the ATP tour soon!
We have enjoyed our time here in Sarasota and in being able to take part in all of the opportunities being here has provided, not only for PD, but other venues such as the Selby Botanic Gardens, the various beaches, fishing in Sarasota Bay and more. At this point we are planning to renew our lease on the townhouse so we can continue to take part in all that the area offers, particularly for PwP’s.
Speaking of opportunities, next week we will attend the Davis Phinney Victory Summit event in Punta Gorda,about an hour south of Sarasota. Many of the Pedaling for Parkinson’s participants will also be going and we are looking forward to attending this great event for the second time. You can read about our first visit here.
And finally you might have noticed the Top 50 Parkinson’s Blog badge on the right which wouldn’t have been possible without you, my loyal readers and followers. Thank you!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
We have a new President who is forming a new Cabinet and we are sure to see changes that may have significant impact not only on those of us with Parkinson’s Disease but also many others with chronic diseases or preexisting conditions. Some of these changes may be positive and others may be negative and so we must be alert and pay attention to what is happening in Washington DC.
One way to do that is to follow the Michael J Fox Foundation (MJFF) FoxFeed Blog. Friday Ted Thompson JD, former head of the Parkinson’s Action Network and now the Senior VP of Public Policy for the Foundation published an excellent blog post about possible policy changes which I have reproduced below.
Sign up here to get emails from the MJFF and stay up to date about public policies that impact the Parkinson’s community.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
As President Donald J. Trump is sworn in and a new Congress begins its work, headlines about policy changes big and small fill the airwaves, internet and newspapers. There is uncertainty about what will happen in Washington, but with every change comes an opportunity for advancement, and we will be looking for ways to collaborate with lawmakers on both sides of the aisle who are interested in supporting our community.
While we don’t have a crystal ball, we are closely monitoring activities on Capitol Hill and in the White House. We’ll update the community as we learn more about potential proposals that could impact people with Parkinson’s and the Foundation’s three policy priorities — furthering Parkinson’s research, supporting drug development and approvals, and safeguarding access to care.
Here, we’d like to share information about several policy issues that could see changes under the new Administration.
Tension over Medicare and Medicaid
Research indicates that 80 percent of people with Parkinson’s rely on Medicare, and of that population, up to one-third also are eligible for Medicaid. Both of these programs play an important role in providing our community with adequate health care coverage.
Republican lawmakers have differing opinions when it comes to changes to Medicare and Medicaid. Throughout his campaign, Trump assured Americans he wouldn’t touch these programs, but GOP leadership, including Speaker Paul Ryan (R-WI) and Secretary of Health and Human Services nominee Tom Price, have consistently advocated for Medicare reforms.
Speaker Ryan has crafted a plan, dubbed “A Better Way,” which would slowly raise the age of eligibility for Medicare, cap federal spending for the program, increase subsidies for low-income seniors and raise out-of-pocket costs for higher-income retirees. Ryan’s plan will likely come into play in upcoming talks about Medicare and Medicaid.
As specific legislation is introduced, we’ll keep you up to date and continue to advocate for the parts of these programs that serve people with Parkinson’s.
Talk of Repealing and Replacing the Affordable Care Act (ACA)
Among other provisions, the Affordable Care Act, or Obamacare:
prohibited insurance companies from discriminating against those with pre-existing conditions, such as Parkinson’s disease,
eliminated annual and lifetime caps on coverage of essential health benefits (e.g., emergency services, hospitalization, etc.), and
expanded states’ Medicaid eligibility criteria.
The ACA also increased the total number of people with health care coverage.
There is a clear desire among the majority in Congress to repeal the ACA. Earlier this month, lawmakers passed a budget blueprint that included repeal of key parts of the ACA. This budget bill doesn’t actually become law, but acts as a guide for upcoming budget negotiations and sends a very strong signal on the GOP plans for the ACA.
Despite ongoing conversations about repeal, no replacement plan has been decided upon and some GOP leaders are calling for a more deliberate approach in which a replacement plan would be simultaneously passed if and when the ACA is repealed. According to the Congressional Budget Office, the non-partisan agency that provides analyses on economic and budgetary issues, 32 million Americans could lose health coverage if a replacement plan isn’t enacted. (That’s not to mention the 52 million Americans with a pre-existing condition who also could be at risk of losing coverage.) ACA repeal could also have implications for those on Medicare, as provisions in the ACA looked to eliminate the Medicare Part D ‘Donut Hole’ by 2020 and remove the cost for routine wellness visits.
Trump discussed the situation recently, saying that his replacement plan will provide health care for everyone at a lower cost. He restated his campaign stance, which included that he would allow government programs like Medicare and Medicaid to negotiate directly with pharmaceutical companies, with the goal of achieving overall savings to health care.
The Foundation was in touch with the Trump transition team in late 2016 to explain the critical role that high quality and affordable health insurance plays in helping our community access essential treatments and care. We will share updates on our blog and by email as efforts around the potential ACA repeal take shape.
Support for Medical Research Funding
The federal government is the world’s largest public funder of Parkinson’s disease research. In 2016, approximately $152 million was invested in PD breakthroughs at the National Institutes of Health (NIH), and another $16 million was provided to the U.S. Department of Defense’s Parkinson’s Research Program.
There is broad, bipartisan support for federal investments in medical research, as evidenced by an increase in the NIH’s total budget over the last two years. But there is concern about President Trump’s comments on medical research, as well as his nominee for the Office of Management and Budget (which develops and executes the president’s budget), who has questioned whether the federal government should spend money on medical research. Recent reports that President Trump has asked the current NIH Director Francis Collins to remain on are a positive sign for research. Collins has been director for the past eight years, was the lead scientist for the human genome project, and has had a significant role in the BRAIN (Brain Research through Advancing Innovative Neurotechnologies) and Precision Medicine Initiatives.
Names Raised for New Food and Drug Administration (FDA) Commissioner
The FDA is responsible for approving new drugs and medical devices before they come to market. Currently, the agency will only approve a therapy or treatment once it has shown to be both safe and efficacious (meaning it actually works). Some of Trump’s potential picks for FDA commissioner (the top position at the agency) have said drugs and devices should only be proven safe, not efficacious, before they are approved. These views are based on a desire to get new treatments into patient hands more quickly, but they raise concerns that it would establish a new government approval standard that is potentially lower than the existing one. MJFF will provide more information as an official nominee for FDA commissioner is announced later in the year.
New leadership and proposals are a reality, but in our system of government very few policies change dramatically overnight. Thoughtful leaders of both parties and members of the Trump Administration will hopefully consider the full impact of new policies before they are pursued.
In this changing political climate, the Foundation will continue to advocate for the Parkinson’s community, keeping in mind our three policy priorities. We’ll work to ensure people with Parkinson’s have access to affordable health care and treatments, and to protect our country’s federal investments in medical research.
Wow, here it is almost the end another year, a time for retrospection, making resolutions and watching a lot of football. As always it has been a busy year that saw us decide to spend more time in Florida in an effort to determine if we could live here full time and take advantage of all the benefits the area offers for Parkinson’s Patients. And we spent time with friends and family in both Florida and Tennessee and during trips to Denver, San Francisco, North Carolina, and Seattle. We also attended the World Parkinson’s Congress in Portland, Oregon. (note the links throughout this post will take you to a relevant blog post or article in case you missed them the first time!)
Probably the most important thing we have been able to do is increase our exercise time while in Florida. We joined the YMCA and were attending 2 – 3 exercise classes a day there until we got hooked on tennis after taking lessons through, where else, the YMCA. We have been playing 4 or 5 times a week and we plan to sign up for more lessons next month. I find it is not only a good work out but helps alleviate the PD symptoms. Several studies were recently released showing the benefits of exercise for PD and I plan to take advantage of the opportunities we have while I still can. Now if I can stay injury free!
So we have adjusted the exercise schedule to try and limit it to about 2 hours a day. I continue the Pedaling for Parkinsons class twice a week and we go to the PD in Motion class and will start our second season of Let Your Yoga Dance for Parkinsons (this is a video link) in January. We have found also found the Tai Chi classes beneficial and think we will sign up for a class at the Sarasota branch of the Tai Chi Society also starting in January. In addition to helping with movement and balance, we find it calming and centering.
On the resolution front I decided that instead of my usual resolution to post more often (which has worked so well 🙂 I would make a few updates to the blog So you will note a new tab at the top labeled My Book List and if you click on it, you will find…wait for it…. a list of books with my short review. As the page notes there are over 2,600 PD books listed on Amazon so I’ve got a lot more reading to do! Check it out when you get a chance.
I’ve also updated My Blog List, adding a few more blogs and correcting a couple of bad links. The new links are marked with (new) to make them easier to find.
I hope everyone had a great holiday and wish everyone a Happy and Healthy New Year! Let’s hope it is the Year of the Cure!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)
We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met. Amazing how life changes isn’t it?
Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder. But then what? You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure! But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug. Oh and that is the same problem with your second choice too!
Oh look, a soap box….
I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants. Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug. Presto, no longer eligible for many trials, at least while in the early progression of PD.
I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs. But, what if the combination produces a better result? Already many of us take two or more drugs to treat all of our symptoms and improve our quality of life. So here’s my idea..
Why not include some already medicated volunteers in the study design? For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex? It might require some tweaking of the dosage of the drugs but you have another 100 participants in your trial. Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.
…..OK, off the soapbox.
Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!
As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Yesterday was our local Parkinson’s Walk held in Oak Ridge,TN. The weather websites were predicting rain and thunderstorms, but it turned out to just be a cloudy day. Our local walk is in support of the Unity Walk in New York City and 100% of the funds raised go to the seven major Parkinson’s research organizations.Despite the weather forecast we had a good turnout and raised over $8100 for PD research. I want to again thank all of you who made a donation in support of Mara and me and Team PK Hope is Alive – THANKS!
We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.
We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.
This week I moved the blog to its own internet domain www.tomspdblog.com which is easier for me (and you) to remember when people ask for the address. Google assures me there should be no noticeable change for readers as both the old and the new address will end up at the blog. So far it seems to be working OK, but those of you who have the address bookmarked may want to update your bookmark to the new address.
Next Thursday we go to Vanderbilt for my next appointment with my Movement Disorder Specialist. I continue to be so much better on the new medication and I hope Dr. Davis agrees. I am also hoping to be considered for the NPF Parkinson’s Outcomes Project which is conducted at the NPF Center’s of Excellence of which Vanderbilt is one. They have been following PwP since 2009 with a goal of establishing models of excellent PD care for best health outcomes. You can read more on the NPF website at this link .
I’m still working at reviewing some of the exercise options available for PwP, maybe it will be done by the next post (I’m pretty sure procrastination is another non motor symptom!) In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight and be an agent for change!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
