• 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

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!

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!

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!

  • 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

  • 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