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

Happy Thanksgiving!
Just a quick post wishing everyone a Happy Thanksgiving from Seattle. I have much to be thankful for this year including:
- making a change to a Movement Disorder Specialist who recommended a medication change that resulted in a great reduction of my symptoms;
- and that improvement allowed me to increase my exercise time which also helped to reduce rigidity and increase my mobility;
- and the increased mobility gave us a chance to travel to visit family and friends across the country;
- and I got to fish almost every day I was home without having to sit down after 15 minutes to rest!
But most of all I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my wandering posts. I hope I have provided information of value to PwP’s and others through this blog and the Tennessee Parkinson’s Resources site that we started this year.

Thank you all and Happy Thanksgiving!
November 26, 2015
Anniversaries abound!

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

August 8, 2015
On the Road Again!

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

June 19, 2015