• Happy Holiday Season!

    Can you believe it is already Thanksgiving Weekend and the start of the holiday season!  Time really flies when you are having fun. Or maybe it really flies when you are exercising like crazy? For sure it flies by when you are having fun exercising!  We discovered we really enjoy tennis and have been down to the courts at our complex a couple of times in addition to the classes which we hope to continue in the coming months.  It seems that exercising for an hour before the Pedaling for Parkinson’s class is having an impact on my cycling, so think I will try skipping that class for a bit to see if that is the issue or not

    A quick reminder that following Black Friday and Cyber Monday is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause.  Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities.   It is a great opportunity to make a difference.

    In the spirit of Thanksgiving I want to say a big THANK YOU to my wonderful wife and care partner, Mara, and to my family and friends and to all of you who take the time to read my posts and follow my journey with PD.  Thank you all and Happy Holidays!

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

     

     

  • Suddenly We Are Gym Rats!

     
     
     

    After returning to Sarasota 4 weeks ago we have been ramping up the exercise routine. The day after our return I was off to the YMCA for the pedaling for Parkinson’s class while Mara did weight training.  Later we met with one of the gym instructors to get instructions on the use of the equipment and his recommendations for what I should work on to improve my PD symptoms. Then we met with a wellness coach to go over all of the classes they offer at the YMCA and which ones she thought would benefit us the most.

    The result is we have added 7 more hours of exercise to the 2 hours of pedaling and our hour of PD in Motion for a total of about 10 hours a week. Our classes include Tai Chi, Yoga, Fitness Fundamentals and an aerobic fitness class. Then yesterday, we added two weeks of adult beginning tennis lessons in November since we bought tennis rackets when we got here in June thinking we would take advantage of the courts here in the Village Walk complex where we are renting.

    So now the question  – does more exercise = more benefits for PD patients or can I overdo it? I am trying to pay attention to how well I perform each exercise class and, more importantly, will it impact how well I do with the pedaling class. There is a correlation between maintaining 80 plus RPM and pushing my heart rate into my training zone for at least 30 minutes twice a week and a reduction in my symptoms, so this is the exercise that has to be first. Of course, the way it worked out I have two other classes on the same day as the pedaling,one before and one after.   So far I have noticed some impact on the pedaling but I am hopeful that, as my overall fitness improves, the impact will diminish.

    In our spare time :>) we have been to concerts at the Selby Botanic Gardens, went to the Florida Studios Theater for an evening of Improv, gone to the beach and attended a concert here in the Village Walk. During that concert we discovered that a couple from our PD in Motion Class are also renting in Village Walk – it certainly is a small world!

     

     

    Oh, I did find some time to do a little fishing in the lakes around Village Walk and caught a few nice size small mouth bass. A few days ago, while fishing with some light spinning gear, I caught a trophy large mouth! After about ten minutes I finally landed the fish and luckily a couple came by and took some pictures or this would have just been another fish story! I think this might be the biggest fish I have ever caught, certainly the largest bass.

     
     
     

    While I have your attention I want to pitch SURE-PD3, a clinical trial that is recruiting right now. This is a phase three trial recruiting 270 subjects in 60 locations across the US. The primary objective is to determine whether a moderate elevation in serum urate over 2 years slows clinical decline in early PD.  To learn more about the trial, click here  or on the link on the right to see the presentation and get a link to the Fox Trial Finder description with a list of the trial sites.

    Well, off to exercise!

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

     

     

  • The WPC Experience, a Volunteer Perspective

    Mara and I attended the World Parkinson’s Congress (WPC) in Portland, OR in September and it was a phenomenal experience.  The WPC is a meeting held every three years that brings together PwP’s, Caregivers, Researchers and members of the medical community to discuss what’s happening in PD research and care.  This year’s meeting was the biggest so far with over 4,400 attendees from all over the world.  The presentations ranged from highly technical research results to what is the best exercises for PD and what’s on the horizon.

    Many of my fellow PD bloggers were in Portland and I have read many excellent posts about their experiences at the WPC which I have linked to at the bottom of this post.  I met a few authors of blogs I follow and saw several others but didn’t get a chance to meet face to face as I performed my volunteer duties.

    Rather than duplicate the information contained in the many excellent posts by my fellow PD bloggers, I thought I would write about the WPC from a volunteer’s perspective.  As you can imagine, a conference with over 4,400 attendees from all over the world takes a lot of work and coordination.  The volunteer coordinator was Matthew DePace and he had his hands full making sure all of the presentations were covered, greeters were stationed around to answer questions and guide attendees and be the point person for any problems we might have with microphones, projectors etc. He not only managed to pull it all off, he provided snacks in the volunteer room to keep us going!

    I was assigned as a greeter/room monitor for one of the presentation rooms, so I was able to see and  hear some of the presentations in that room each afternoon when I wasn’t scanning in the attendees and handing out hall passes (OK maybe I didn’t have to hand out hall passes).  Mara mostly worked in the registration area directing attendees to the right locations, helping them find the presentation room they needed, handing out convention goodie bags and programs and answering all kinds of questions.

    Being a volunteer was hectic and exhausting but it was also exciting and rewarding.  We met PwP’s of all ages from all over the world and had the opportunity to talk about differences in care, diagnoses, etc.  We saw many old friends from the Grand Challenge meetings in Grand Rapids and other meetings we have attended. And we made new friends as we expanded our international support group.

    Even though we were busy, we did attend several sessions including ones on stem cell research and exercise.  One of the highlights for us was being present when Tom Issacs of the Cure Parkinson’s Trust in the UK received the WPC award for Distinguished Contributions to the Parkinson’s Community.  I have written about Tom before (here and here) and this award was well deserved.  Tom’s acceptance speech was a mixture of gratitude, humor and hope.

    The closing ceremony was an emotional end to a great 4 days and included this quote from Dr. A. Jon Stoessl, President-elect of the WPC who said, “In the clinic, we focus on what you can’t do but at WPC 2016 we see all the things you can do.”. This is the plus of bringing together PwP’s, care partners, members of the PD medical community and researchers in one place.  We found this to be true in the Grand Challenge events and it was exciting to see it work on such a large scale.

    After yet another phenomenal performance by Tom Issacs who sung a song to the tune of Climb Every Mountain (watch the unplugged version here) the conference ended with a drum ceremony that involved the entire audience.

    As promised here are several links to blog posts from other bloggers that attended the WPC.  By no means are these the only links, there are many posts, tweets (#WPC2016), and web pages with great information from the WPC, so fire up your favorite search engine to find more!

     
     
    from Sheryl Jedlinski (Living Well with Parkinson’s Disease)

     

     

    Arriving At the World Parkinson’s Congress and Perky’s Interview with Brian Grant from Allison Smith (The Perky Parkie)

    Notes from the World Parkinson’s Congress from Kirk Hall (Shaky Paws Grandpa)

    World Parkinson’s Congress 2016 from Karl Robb (A Soft Voice in a Noisy World)

    5 Inspirational moments from the World Parkinson’s Congress 2016 from Parkinson’s Life

    WPC Highlights – Eli Pollard and The World Parkinson’s Congress 2016 from The Cure Parkinson’s Trust

    Again this is not a complete list but should give you a pretty good feeling for the World Parkinson’s Congress 2016!

    We are back in Sarasota and I have started Pedaling for PD and the PD in Motion classes so my exercise time is ramping back up after a few weeks (or months) of being a bit lazy.  It’s amazing how quickly you are able to get going again and even more amazing how much better I feel.  More about the Sarasota Experiment Part Two in the next post.

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

A Month of Change

September has been a month of changes including:

  • We moved from Tennessee to Florida
  • Our house in Tennessee suffered a catastrophic flood due to a broken pipe
  • Hurricane Irma also moved to Florida
  • I moved this blog to a new host and a new platform and
  • Summer left and Fall arrived

We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners.  We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again.  Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!

So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day.  We found the house to be almost a complete remodel with water damage through out both floors.  We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company.  I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.

While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available.  Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.

Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too.  As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.

Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress).   As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist.  I will keep at it and all should be functional soon.

In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address.  I think this was a one time event and future emails will only be sent when I have a new post.  If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed.  Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.

And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow.  Sounds OK to me!

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

 

 

 

A Month of Change

September has been a month of changes including:

  • We moved from Tennessee to Florida
  • Our house in Tennessee suffered a catastrophic flood due to a broken pipe
  • Hurricane Irma also moved to Florida
  • I moved this blog to a new host and a new platform and
  • Summer left and Fall arrived

We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners.  We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again.  Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!

So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day.  We found the house to be almost a complete remodel with water damage through out both floors.  We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company.  I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.

While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available.  Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.

Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too.  As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.

Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress).   As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist.  I will keep at it and all should be functional soon.

In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address.  I think this was a one time event and future emails will only be sent when I have a new post.  If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed.  Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.

And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow.  Sounds OK to me!

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

 

 

 

A Month of Change

September has been a month of changes including:

  • We moved from Tennessee to Florida
  • Our house in Tennessee suffered a catastrophic flood due to a broken pipe
  • Hurricane Irma also moved to Florida
  • I moved this blog to a new host and a new platform and
  • Summer left and Fall arrived

We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners.  We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again.  Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!

So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day.  We found the house to be almost a complete remodel with water damage through out both floors.  We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company.  I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.

While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available.  Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.

Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too.  As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.

Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress).   As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist.  I will keep at it and all should be functional soon.

In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address.  I think this was a one time event and future emails will only be sent when I have a new post.  If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed.  Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.

And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow.  Sounds OK to me!

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

 

 

 

Comments

2 responses to “A Month of Change”

  1. Bettie A. Umland Avatar
    Bettie A. Umland

    Sorry to hear of the unpleasant pieces of your blog, but delighted to hear of your improvement changes with the climate suiting you more in Sarasota. Hope the remodel goes okay. Stress is not what you need. Enjoy your new digs and keep being an inspiration to us all.

    1. Tom Eckhardt Avatar
      Tom Eckhardt

      Thanks Bettie. Stay healthy!