We spent the last two weeks in Sarasota, Florida getting things set up and exploring the community. We are home now but will return at the end of the month for a few weeks before coming back to The Lake Cottage for most of the summer.

We brought our bicycles down to Sarasota and have enjoyed exploring the Village Walk community where our town home is located riding along the various trails that crisscross the community. We ride to the town center to pick up our mail, visit the fitness center or go to the pool. We have also found that by car we are pretty much just 15 minutes or less away from the grocery store, the YMCA, the mall, restaurants and (at least during the off season)
the beach.

We have joined the Sarasota YMCA where they have a Pedaling for Parkinson’s class twice a week along with other classes for seniors. They are also working to get certified as PWR (Parkinson’s Wellness Recovery) instructors and we attended one of the classes last week as ‘guinea pigs’ as they get ready for certification in another week or so. The program was developed by Becky Farley who also developed the LSVT BIG program. The class was great and incorporated chair exercises along with standing exercises using exaggerated movements. You can read more about PWR here.

We found it easy to establish a daily exercise routine in Sarasota. Along with the pedaling classes, being able to easily bike, walk, or work out at the community fitness center provides a good variety of exercises during the week. I have become a firm believer that regular exercise is slowing the progression of my PD in addition to improving my overall health. And after reading “What’s Good for the Heart is Good for the Brain” on NPR this month, I’m hopeful that regular exercise will also improve my cardiovascular health and cognitive function along with slowing my PD progression.

You are probably beginning to notice that I write as much about the benefits of exercise as I do about signing up for the Fox Trial Finder and Fox Insight programs. And I know some of you are saying ‘I can’t exercise” because I have balance issues or I am too rigid or _______ (fill in the blank). I recently read a perfect response to “I can’t” in a post by Natasha McCarthy on her blog A broken body’s Journey where she said:

“I’m always preaching about how the studies prove that exercise is the
only proven way to slow the progression of PD. If you are told there’s
this miracle fix that can ensure your body works the way it does (or
maybe even better) and despite your degenerative disease stays where it is for a long time to come wouldn’t you beg me for the secret? Well,
it’s no secret, you just have to get up and move the more the better.
If you say you “can’t” run anymore “try” walking. If you say you
“can’t” do aerobics “try” water aerobics. “Can’t” handle impact on your
feet “try” biking. Your balance is bad and you say you “can’t” because
you’ll fall, then try a stationary bike with a good seat, or chair
yoga!” (Read the entire post here)

So in addition to clicking on the logos to the right and signing up for Fox Trial Finder and/or Fox Insight, how about checking out the free exercise video available from The Davis Phinney Foundation website. The exercises are designed for PwPs, demonstrated by PwPs , can easily be modified for any level of fitness and they don’t require a gym membership or a swimming pool! Click on the Davis Phinney Foundation logo on the right to check it out.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Parkinson’s Awareness Month Is….Almost Over

Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday). And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day? I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month. Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year? OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week? I don’t think setting aside a month, week or day is the answer!

OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest. We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few. We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around. So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or…… Let’s not let up because Parkinson’s Awareness Month is over.

Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016. The National total so far is over $1.2 million. I want again to thank all of my supporters this year, together we will find a cure!

Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups. PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation. In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year. I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.

So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym. We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.

We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there. So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy. We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it. Watch this space for more information about how it all works out.

Couple of last minute items:
1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th. Click here for more information and to sign up. A great opportunity if you haven’t been able to attend a local event.

This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23. Early registration ends July 5th. Mara and I are attending and serving as volunteers. Check out the event schedule and register here.

Finally, I saw this great info graphic on Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association. I think it hits the exercise nail right on the head!

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Exercise, Exercise, Exercise!

This year while at the beach we have really stepped up the exercise routine. In addition to the Dance for PD classes and the Let Your Yoga Dance class, Mara has been attending a Yoga Fundamentals class and a Senior Fitness class while I am spinning away in my Pedaling for Parkinson’s class! After meeting with a fitness instructor at the gym, we are also doing strength training for an hour 2-3 days a week and cardio on the bike or treadmill the other days and still try to fit in a walk on the beach most days.

About now you are saying to yourselves, “Wow, Tom has gone over the edge on this exercise issue, wonder if he has seen any benefits”. And the answer is a resounding YES, I have less rigidity, better muscle tone, sleep better, walk better, and even some improvement in my posture (at least while I’m in dance class!). No I haven’t turned into Charles Atlas, no six pack flat abs or bulging muscles just better movement and improvement in my symptoms and overall health.

Why Exercise?

Davis Phinney says it best: “Exercise is medicine, so don’t miss a dose.” Check out the Top Ten Tips for Exercising with Parkinson’s Disease on the Davis Phinney Foundation website. You can also order a copy of the Parkinson’s Exercise Essentials DVD and exercise guide at no charge from their website. Also available at no charge is the Every Victory Counts Manual with tools for proactive self care.

There are many studies that show exercise to be beneficial not only for overall health but specifically for improvement in PD symptoms. A summary of recent research found on the National Parkinson’s Foundation site ends with the statement that the research presented “…shows that for people with Parkinson’s, exercise is an essential part of managing the disease.”

On the Michael J Fox Foundation website they point out that “There is evidence that exercise may hold specific benefits for people with Parkinson’s in staying active and relatively limber, and improving balance and motor coordination.” You can find several podcasts with tips on how to get started with an exercise program, what exercises seem to be beneficial and current research results. Download one today and listen to it while you exercise!

As you can see there are a variety of possible exercises for Parkinson’s including boxing, dance, walking, running, cycling, yoga, etc. Many of them can be done while seated and they will get you moving. In fact both dance classes that we take and the senior fitness class provide a great workout while seated. So talk to your primary care physician and have a thorough checkup and start exercising and I think you will see the benefits in a short time. Exercise helps keep the PD at bay while research continues to find a cure, so exercise AND sign up for Fox Trial Finder and Fox Insight!

Here are some additional resources that might help you find an exercise program that fits your needs:
Dance for PD – click on classes to find one near you.
Rock Steady Boxing – click on find a class
Delay the Disease – a physical therapy program with DVD’s and Books available to purchase and a growing list of trained instructors and classes. I have reviewed the DVD’s and books and found them well written and the exercises can be done sitting or standing.

Our time at the beach is about up and we return to Tennessee in a week or so, just in time for our Oak Ridge support group Parkinson’s Walk in support of the Unity Walk in NYC. Despite my fumbling attempt last year as MC, they have asked me to perform the same duty again this year. If you are in the area, please join us on April 16th. If you can’t join us, think about donating to our team PK Hope is Alive. Unity Walk is unique because all of the costs are covered by sponsors so that 100% of your donation is distributed to the 7 major Parkinson’s research organizations. Donation information is available on either of the links above.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Tag: Parkinson’s Disease

Eight years…

..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!

July 26, 2021
The Saga Continues!

Wow what an interesting month. Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market. When we arrived at the home, we discovered it was a long way from completion! To say we were disappointed would be an understatement for sure. The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done. This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.

After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through on Monday the 26th!) What a long and winding road!

In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price. We put in an offer which was accepted and we are set to close March 30th! The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches. Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move. Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks.

With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis. Mara is playing tennis almost every day while I play at least three times a week. Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval. We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays.

April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month. There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class. I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.

I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the Unity Walk in Central Park on April 26th. For more information about the Unity Walk and how you can support us, click here.

March 25, 2018
Sarasota Happenings

We have been busy with exercise, visitors and events since returning from Knoxville after Thanksgiving.

Right after we returned, our friends Pat and Steve from Colorado arrived for a visit which included a trip to Walt Disney World where we met up with our mutual friends Ted, who also has Parkinson’s, and his wife Jan. We spent two nice days at Epcot and the Magic Kingdom with light crowds so we actually got to ride the 7 Dwarfs Mine Train with only a 25 minute wait! (That’s all six of us zipping down the hill) And we got a lot of exercise walking around the parks.

We finished the visit up with our first trip to the Dali museum in St. Petersburg.   It contains the largest collection of his works outside of Spain, all donated by a couple who started collecting his work in 1940’s. It was interesting to see his painting style change to surrealism as his career progressed.

This week we also attended Cause 4 Fashion, a lunch and fashion show to benefit the Neuro Challenge Foundation for Parkinson’s. All of the models were either Parkinson’s patients or care persons and our friend Carolina was ‘on the runway’ again this year. It was a well attended event and for a great cause. Neuro Challenge sponsors over 30 monthly education and support programs in four Florida counties including our PD in Motion class and all at no charge.

As always, we try to exercise at least 5 days a week. We attend the PD in Motion dance class every week and play tennis at least 3 times a week. I attend Pedaling for Parkinson’s at the YMCA and Mara does her weight training routine twice a week.   Kathy, our pedaling instructor, continues to push our class with new routines which keeps it interesting. I am amazed at the improvement in my aerobic base since we returned in September.   I continue to see a reduction in symptoms for up to 24 hours after each class. If you have a class near you I highly recommend adding it to your exercise routine.

As you have probably noticed, I continue to play around with the format of the new site along with trying to find all of the broken links and missing photos. This week I also updated the Resources page to reflect the merger of Parkinson’s Disease Foundation (PDF) and the National Parkinson’s Foundation (NPF) in to Parkinson’s Foundation. I added a new resource website about hallucinations and delusions caused by PD. The site is called more to parkinson’s  and is sponsored by Acadia Pharmaceuticals.

In case I don’t produce another post this year, I will take this opportunity to wish everyone a Happy Holidays!! We hope 2018 will be a year of Peace, Joy, Good Health and Good will for us all.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

December 10, 2017

Our Sarasota Experiment – Part One

Parkinson’s Awareness Month Is….Almost Over

Exercise, Exercise, Exercise!

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Tag: Parkinson’s Disease

Eight years…

The Saga Continues!

Sarasota Happenings