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
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
