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
Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.
Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.
On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.
Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.
On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.
Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.
On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Our first week at the beach is already over. 🙁 Last Saturday we attended the Parkinson’s Symposium sponsored by The Neuro Challenge Foundation and Sarasota Memorial Hospital. This is an annual event with 500+ attendees and included talks by recognized PD experts followed by a Q & A session afterwards. In between the talks we did two mini exercise sessions which included some voice exercises from the Loud portion of the Big and Loud program. We were joined at the meeting by Joel and Melissa whom we first met at Kripalu and then again here at the beach last year.
At the meeting we met Brad and Lynn Schramek who founded the Parkinson’s Cafe for the purpose of providing social, cultural and intellectual interaction for people with Parkinson’s disease and their families. This years events include a visit to the Asolo Repertory Theatre and a visit to the Sarasota Ballet. Both agendas look interesting so we have signed up to attend them both.
This week NPR (among others) talked about the benefits of exercise for Parkinson’s and so did all of the speakers at the Symposium. Since we arrived we have upped our exercise routine to include at least an hour walking plus Qi Gong and Tai Chi. During my recent Doctor visit, we discussed my lack of arm swing while walking and he suggested using walking poles to improve my posture and arm swing while walking. So this week I took delivery of a pair of Green Zen Nordic walking poles from York Nordic and they definitely help with the arm swing, posture and pace. I also started the Sinemet (Cardidopa/levodopa) at the beginning of the week and
I have noticed reduced rigidity and shuffle along with the improved walk times over last
year’s beach visits.
Also this week we have signed on to be Fox Trial Finder Ambassadors, which I’m sure comes as a surprise to regular readers 🙂 We are looking forward to helping spread the word about the importance of participating in clinical trials at support groups, events, informal meetings, and any other opportunities we get, like this blog.
This weekend, our granddaughters (oh and their parents) arrive from Seattle for a week of beach fun so I’m thinking it will be another fun and busy week! Thanks for reading.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
For the last few months, Mara and I have been discussing changing neurologists with the idea of being seen by a Movement Disorder Specialist (MDS). I was seen by a MDS when we went to U of FL last year we felt that it was too far of a drive for regular appointments. The Vanderbilt Movement Disorder Clinic in Nashville is also an National Parkinson Foundation (NPF) Center of Excellence, they conduct a lot of Parkinson’s research and it is a two hour drive instead of ten, so we decided that was where I would go. So this week I met with Dr. Thomas Davis, a MDS and clinical researcher and Director of the Vanderbilt Movement Disorder Clinic. It was a very positive experience and we were quite impressed with Dr Davis and the Vanderbilt Movement Disorder Clinic staff.
After a simple check in process that took all of 5 minutes and only required my electronic signature on the usual forms, that’s right, I did not have to fill out any health history forms, who to contact, etc.! I had barely sat down when a nurse called me into an interview room where she took my BP, weight, and medical history once again without me having to fill out a form! She then took me to the examination room where we met Dr. Davis.
During the meeting with Dr Davis we discussed my PD history, what medication I was on and how it was working, what other symptoms I was having plus he performed the usual PD tests, finger and toe tapping, walking, etc. He also tested my cognitive skills and once again I passed! We then discussed my medication routine and he recommended I start taking levadopa/cardidopa along with a reduced dose of Mirapex four times a day instead of three. We were happy with this recommendation as it seemed the Mirapex has not been as effective in reducing my rigidity and I am taking the maximum dose. He also noted that exercise is still the best prescription for PwP and reducing the rigidity and other symptoms will allow me to up the exercise routine. The appointment lasted about 50 minutes and we came away feeling that he and the staff cared about me as a person and a patient and we had made the right decision to transfer to Dr Davis.
We also met with Kelly Arney, research outreach coordinator, whom I had been in contact with last year about a clinical trial sponsored by NPF to track the effects of treatment. I did not qualify then because the trial required participants to be seen by the Clinic, but now that I am a patient, I should be able to participate beginning with my next visit at the end of April. We also discussed upcoming clinical trials with both Dr Davis and Kelly and they will contact me if I meet the qualifications.
When I checked out, they had me sign up for access to their electronic health record system which gives me access to all of my records and a way to email Dr Davis. Again the process was simple and an employee walked me though the sign up at a terminal in the waiting area, then gave me full access to the system.
The NIH defines patient-centered care as follows: “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.” The care we received at the Vanderbilt Medical Center Movement Disorder Clinic certainly fit the NIH definition.
And the positive experiences continued because Friday we checked into our ‘home away from home’ a villa on Siesta Key! Yes that’s right, we are at the BEACH! We will be attending a Parkinson’s symposium on Saturday and I also plan to sign up for the Big and Loud program while we are here so I will have plenty to blog about next time. Until then don’t forget to sign up for the Fox Trial Finder, we all have a stake in finding a cure.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
