• Our Sarasota Experiment – Part One

    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

IT IS WHAT IT IS!

Happy New Year!

OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

Here’s what’s happened in our world since my last post:

We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

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

Other Posts

IT IS WHAT IT IS!

Happy New Year!

OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

Here’s what’s happened in our world since my last post:

We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

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

Other Posts

Year: 2020

  • Happy New Year!

    Happy New Year!

    OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!

    Here’s what’s happened in our world since my last post:

    We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!

    I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!

    We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.

    Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.

    If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.

    I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.

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

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