• 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

Nine Years

Today marks the 9th anniversary of this blog. Which means that July 24th marked the 9th year since I was diagnosed with PD. Those of you who have followed my blog know that usually I write a post on the anniversary of my diagnoses and I started this post a few days before the 24th but I was unable to complete it until today.. Read on to find out why.

My son and family recently moved to the Washington DC area and they invited us to come up and enjoy the Fourth of July. We had a wonderful trip and visit with Ryan and Sarah and Sarah’s sister’s family who had just been assigned to Colorado Springs and were leaving the day after the 4th. We also got to visit with our Grandson Garrett who started his internal medicine residency at Georgetown the week before.

We stayed downtown for the fourth which made it easy to watch the fabulous fireworks display. On the fifth we went to the Kennedy Center to see To Kill a Mockingbird which was wonderful and an item on our bucket list. We retuned on the 7th and on the 10th, I tested positive for Covid!

It started with a sore throat , then a mild fever and a headache and complete fatigue. I felt like I had not taken my medication for days and now I couldn’t hardly move. The next day the sore throat became so severe I thought I had added Strep throat to the COVID but no it was just another symptom of Omicron Covid.

By the 7th day the sore throat was gone, the headaches were just once in awhile and I tested negative. But the fatigue and lack of muscle strength continued and I was often unable to get up from a chair without assistance let alone exercise for the last 4 weeks. In addition to no get up and go I had no desire to write my usual “It’s been x years since my diagnosis” post until today! I tried several times but I would stare at the screen waiting for the words to appear like magic.

Yesterday I was able to attend our 1 hour tennis clinic and today I played 1 1/2 hours of doubles tennis and I feel normal for the first time in 4 weeks. So in addition to starting to exercise again, I have also started trying to catch up with my to do list with this blog being item number one.

Now that I feel like myself again, I have to say I am pleased with my lack of PD progression this year. About a year ago I spent some time plotting my on and off periods during the day using a program that showed my Levodopa level over 24 hours. As a result I determined that I was taking too much Levodopa and I needed to increase he time between doses of Rytary from 4 hours to 5 hours which resulted in needing only 4 doses per day instead of 5! So I have been on that schedule for almost a year with limited impact on my mobility even though I decreased the amount of Levodopa I take by 2 capsules.

So, until COVID, it has been a positive year on the PD front. I am keeping my fingers crossed 🤞 that I can continue to slow my progression this year while maintaining my current medication regimen. I hope that today marks the end of the COVID fatigue and lack of energy issues, i am ready to move on!

And finally, If you haven’t heard about the End Parkinson’s bill introduced last week in Congress, please go to this link and send a letter to your congress person asking for their support. Thanks!!

Nine Years

Today marks the 9th anniversary of this blog. Which means that July 24th marked the 9th year since I was diagnosed with PD. Those of you who have followed my blog know that usually I write a post on the anniversary of my diagnoses and I started this post a few days before the 24th but I was unable to complete it until today.. Read on to find out why.

My son and family recently moved to the Washington DC area and they invited us to come up and enjoy the Fourth of July. We had a wonderful trip and visit with Ryan and Sarah and Sarah’s sister’s family who had just been assigned to Colorado Springs and were leaving the day after the 4th. We also got to visit with our Grandson Garrett who started his internal medicine residency at Georgetown the week before.

We stayed downtown for the fourth which made it easy to watch the fabulous fireworks display. On the fifth we went to the Kennedy Center to see To Kill a Mockingbird which was wonderful and an item on our bucket list. We retuned on the 7th and on the 10th, I tested positive for Covid!

It started with a sore throat , then a mild fever and a headache and complete fatigue. I felt like I had not taken my medication for days and now I couldn’t hardly move. The next day the sore throat became so severe I thought I had added Strep throat to the COVID but no it was just another symptom of Omicron Covid.

By the 7th day the sore throat was gone, the headaches were just once in awhile and I tested negative. But the fatigue and lack of muscle strength continued and I was often unable to get up from a chair without assistance let alone exercise for the last 4 weeks. In addition to no get up and go I had no desire to write my usual “It’s been x years since my diagnosis” post until today! I tried several times but I would stare at the screen waiting for the words to appear like magic.

Yesterday I was able to attend our 1 hour tennis clinic and today I played 1 1/2 hours of doubles tennis and I feel normal for the first time in 4 weeks. So in addition to starting to exercise again, I have also started trying to catch up with my to do list with this blog being item number one.

Now that I feel like myself again, I have to say I am pleased with my lack of PD progression this year. About a year ago I spent some time plotting my on and off periods during the day using a program that showed my Levodopa level over 24 hours. As a result I determined that I was taking too much Levodopa and I needed to increase he time between doses of Rytary from 4 hours to 5 hours which resulted in needing only 4 doses per day instead of 5! So I have been on that schedule for almost a year with limited impact on my mobility even though I decreased the amount of Levodopa I take by 2 capsules.

So, until COVID, it has been a positive year on the PD front. I am keeping my fingers crossed 🤞 that I can continue to slow my progression this year while maintaining my current medication regimen. I hope that today marks the end of the COVID fatigue and lack of energy issues, i am ready to move on!

And finally, If you haven’t heard about the End Parkinson’s bill introduced last week in Congress, please go to this link and send a letter to your congress person asking for their support. Thanks!!

Nine Years

Today marks the 9th anniversary of this blog. Which means that July 24th marked the 9th year since I was diagnosed with PD. Those of you who have followed my blog know that usually I write a post on the anniversary of my diagnoses and I started this post a few days before the 24th but I was unable to complete it until today.. Read on to find out why.

My son and family recently moved to the Washington DC area and they invited us to come up and enjoy the Fourth of July. We had a wonderful trip and visit with Ryan and Sarah and Sarah’s sister’s family who had just been assigned to Colorado Springs and were leaving the day after the 4th. We also got to visit with our Grandson Garrett who started his internal medicine residency at Georgetown the week before.

We stayed downtown for the fourth which made it easy to watch the fabulous fireworks display. On the fifth we went to the Kennedy Center to see To Kill a Mockingbird which was wonderful and an item on our bucket list. We retuned on the 7th and on the 10th, I tested positive for Covid!

It started with a sore throat , then a mild fever and a headache and complete fatigue. I felt like I had not taken my medication for days and now I couldn’t hardly move. The next day the sore throat became so severe I thought I had added Strep throat to the COVID but no it was just another symptom of Omicron Covid.

By the 7th day the sore throat was gone, the headaches were just once in awhile and I tested negative. But the fatigue and lack of muscle strength continued and I was often unable to get up from a chair without assistance let alone exercise for the last 4 weeks. In addition to no get up and go I had no desire to write my usual “It’s been x years since my diagnosis” post until today! I tried several times but I would stare at the screen waiting for the words to appear like magic.

Yesterday I was able to attend our 1 hour tennis clinic and today I played 1 1/2 hours of doubles tennis and I feel normal for the first time in 4 weeks. So in addition to starting to exercise again, I have also started trying to catch up with my to do list with this blog being item number one.

Now that I feel like myself again, I have to say I am pleased with my lack of PD progression this year. About a year ago I spent some time plotting my on and off periods during the day using a program that showed my Levodopa level over 24 hours. As a result I determined that I was taking too much Levodopa and I needed to increase he time between doses of Rytary from 4 hours to 5 hours which resulted in needing only 4 doses per day instead of 5! So I have been on that schedule for almost a year with limited impact on my mobility even though I decreased the amount of Levodopa I take by 2 capsules.

So, until COVID, it has been a positive year on the PD front. I am keeping my fingers crossed 🤞 that I can continue to slow my progression this year while maintaining my current medication regimen. I hope that today marks the end of the COVID fatigue and lack of energy issues, i am ready to move on!

And finally, If you haven’t heard about the End Parkinson’s bill introduced last week in Congress, please go to this link and send a letter to your congress person asking for their support. Thanks!!