• 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

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!

 

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!

 

Tag: Travel

  • 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!

     

  • Catching Up

    We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

    To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

    In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

    A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

    When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

    We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

    In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

    So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

    “It does not matter how slowly you go as long as you do not stop.” – Confucius
  • The Busy Month of May

    The Busy Month of May

    Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.
     
    First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna  and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started.  And that is how Mara ended up in this great photo with TEZ, one of the stars.  The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.
     
    The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College.  It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.
     
    It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends.  (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie!  A Southern gentleman, all the way)
     
    We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community.  In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.
     
    We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.
     
    Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended  last September.  In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.
     
    And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website!  Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius