For those of you who like to keep track, July 24th – August 6th encompasses several milestones beginning with July 24th which is the 11th anniversary of my PD diagnoses. Yes, it has been 11 years and Mara and I think I am better now that I was then! Certainly I am in better physical shape due to the 5 – 7 days of exercise each week and my symptoms of bradykinesia and other motor symptoms are better because of taking Carbidopa/Levodopa. The fact that I have been able to reduce my Levodopa Equivalent Daily Dose (total LD per day from all sources) from 1688 mg to 932 mg over the past 5 years is certainly an indicator that something is working right.

This week we celebrated our 34th wedding anniversary with a superb dinner out and a fine bottle of champagne! (I need to add the champagne tradition to the PD anniversary) I wouldn’t be in the shape I am without Mara’s support. She is not only the love of my life and my best friend, she is also my caretaker extraordinaire!

Also this week I will celebrate my 78th birthday ( already have the champagne for this one!)

And on August 6th this blog will be 11 years old, and this will be the first post of 2024! Yep it’s been 16 months since my last post and I have no valid excuse except to blame it on my Parkinson’s Disease non motor symptom of apathy. I have had various ideas or information that I could use to create a post but somehow they never get written. But I am going to make the breakthrough today!

While I have successfully reduced my Levodopa Equivalent Daily Dose from 1688 mg to 932 mg per day, I haven’t stopped my PD progression particularly in non-motor symptoms. In addition to apathy, my handwriting is working it’s way to a completely illegible scrawl, my speech continues to get softer (I know, I should be using the Speak Out tools to improve this one) and constipation and drooling have become more prevalent. On the plus side, reducing my Levodopa has reduced my dyskinesia and something I am doing has improved my sleep, often getting 6 – 7 hours per night according to my FitBit:

I wish I knew what I am doing to improve my sleep, I’m pretty sure I could patent it and make a fortune! I don’t follow any of the hints you see like reduce screen time ( I usually get in bed and read on my iPad!) or limit fluid intake before bed, or take melatonin or use CBD/Marijuana. The only thing I have doing different for the past 6 or 7 months is following a version of high dose thiamine therapy or vitamin B1 (HDTT) . I have noticed some improvements from following this therapy and I will discuss the details and process in my next blog post. There, I’ve set myself a task and I will plan to write the next post no later than next week.

Speaking of tasks, I did update the Now What document with recommendations for persons who have been recently diagnosed with PD. You can click here or at the top right to read or print it.

Until then, if you are a long time subscriber and wondered where I have been, I hope this finds you in good health and thank you for sticking with me despite my 16 month hiatus. Welcome to my new subscribers that have signed up in the last 16 months , now you know why you haven’t seen any posts.

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

It’s Parkinson’s Awareness Month – 9th Edition

Yep, in the 10 years since I was diagnosed with PD, I have written at least one post in April about Parkinson’s Awareness Day, or Week or Month. The only year missing is 2018 when we were moving into our Sarasota home. I thought it would be fun to take a trip down memory lane and see what I wrote about in the past 10 years.

The first year was 2014 (click on the links to view) and most of the post was about Autism, my colonoscopy, my first dermatologist visit and how nice the weather was that week, Finally at the end of the post I mentioned the local Unity walk.

The next year, 2015, I quoted paragraphs from another blogger – Corey King. His views about awareness resonated with me and I hope my readers too.

In 2016 my post was long but all about PD awareness! So after 3 years I have caught on to the program and filled a post with my thoughts.

2017 was a quick one, with a link to a video about Unite for Parkinson’s.

In 2019 I had two posts (making up for missing 2018) the first one about our spinning class moving the bikes and holding our class in the lobby of the YMCA which was covered by a local TV station and resulted in my first TV gig! In the second post I covered the YMCA ride again and discussed how the class helps me fight PD. I also talked about experimenting with my medications doses and I am pleased to see that I am taking even less 4 years later!! EXERCISE WORKS!

In the COVID year of 2020, my World PD Day post was a review of the new book Ending Parkinson’s Disease, A Prescription for Action by Ray Dorsey MD et. al. The book was the basis for the Ending Parkinson’s movement that continues to lobby and push for research funding and has pushed to ban various chemicals that appear to cause PD.

In 2021 I discussed the book from the previous year and pushed for readers to join PD Avengers, a global alliance to end parkinson’s. If you haven’t joined, it’s not too late, click on the icon to the right and be a PD Avenger.

And last year, I introduced Spark! the new symbol for Parkinson’s Awareness. I also pushed again for readers to join PD Avengers and shared some infographics from the European PD organization on the myths of PD.

Now it is 2023 and we are getting closer to finding a marker that will improve the results of research trials looking for a cure or at least a disease modifying solution. We know that exercise is the best medicine to slow progression and we have many more options to deal with ‘off’ periods than there were in 2013. There have been significant improvements to DBS and Focused Ultrasound options to help deal with motor issues and tremor. Trials of stem cell implants are at stage 2 and 3 and we know a lot more about the genetics of PD. But I am sorry to report that the cure for Parkinson’s is still at least 5 years away, just like it was 10 years ago.

Parkinson’s Awareness month will continue into the foreseeable future as the hunt goes on to solve PD. So, join PD Avengers, donate to your favorite PD organization, join a clinical trial and let your elected officials know that you support the Ending Parkinson’s initiatives.

We Survived Hurricane Ian!

We have lived in Sarasota, Florida for 6+ years and have come to believe in the urban legend that Sarasota is protected from hurricanes because the Native Americans who first settled here blessed the lands to stay eternally safe from destructive storms and hurricanes. Fact is Sarasota Bay has not been a bull’s eye for a major hurricane in Florida since reliable records began in 1871.

But two weeks ago hurricane Ian that was forecasted to hit in Tampa to our North, started slipping south and suddenly the forecast was for it to come ashore in Sarasota. The emergency management authorities started evacuating the barrier islands, and we joined with a few neighbors to install hurricane shutters in preparation for a direct hit. Since 2002, the Florida building codes require new construction be able to withstand winds up to 150MPH. Our home was built in 2013 so it meets the new codes and it looked liked we were going to test the construction!

We opened our home to couple of friends who had to evacuate and one of them joined us as we hunkered down and got ready to ride out the storm. The Indian blessing seemed to be working as Ian continued to drop to the south and came ashore near Ft Myers’s about 50 miles (as the crow flies)south of us and then tracked northeast thru the city of Northport about 20 miles south of us on its way to the Atlantic, passing over Sarasota with windspeeds of 85 -100 mph. The wind and rain went on most of the night and you could feel the gusts when they hit the house.

We got up the next morning to find the house was undamaged except for a couple of loose roof tiles. There were lots of trees and bushes down in the area but no physical damage that we could see. Even more amazing was we never lost power! According to Florida Power and Light, of their 287,000 customers in Sarasota 280,000 were without power, so we were one of the lucky 7,000. We did lose our internet and cable for a several days, making it hard to keep up with what was happening as cell reception was spotty due to power being out to cell towers or the towers being damaged by the hurricane.

It’s been two weeks since the hurricane and most of the debris in our development has been cleaned up. Our tennis courts are back in operation after replacing the clay that blew off and putting the wind screens back up. There are still pockets of the area without power or internet particularly south of us in Northport where a large portion of the city was flooded by the Myakka river which is still above flood stage.

So, thanks to an Ancient Indian Blessing, good neighbors, and the updated Florida building codes, we survived our first and hopefully only hurricane. We are able to get groceries and fuel again and play tennis and cycle for PD. Life is returning to normal.

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

Month: October 2016

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

October 26, 2016
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!

Key Takeaways from the World Parkinson’s Congress, Part I (Diet, Exercise & Supplements) Larry Kahn (PD Gladiators)

Envisioning a Parkinson’s free world and What’s Up with Levadopa

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

Arriving At the Worl d Pa rkinson’s Congress and Perky’s In terview with Brian Gran t from Allison Smith (The Perky Parkie)

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

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

5 Inspiration al 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

October 5, 2016

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Month: October 2016

Suddenly We Are Gym Rats!

The WPC Experience, a Volunteer Perspective