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.

This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

Category: Friends

Welcome Summer!

This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

June 23, 2019
Me, a Tennis Hero?

We met Jean Kirshenbaum when we started playing tennis here in Sarasota with a regular group twice a week. Jean was not as mobile as some of the players but had an excellent serve and strong ground strokes and you could tell how much she enjoyed playing the game. Jean had suffered a stoke 15 years ago but had worked hard to return to the game she loved, even if she couldn’t play at the same level she was playing at before the stroke.

Earlier this year Jean began to have problems with her gait, her balance and with freezing in place (sound familiar?) which have prevented her from playing with the group. But Jean is not giving up, she writes columns for a tennis website, and recently wrote one that discussed her current conditions and what she is doing to try and overcome them. Part of that column includes her surprise when she found out I took up tennis as part of my plan to overcome PD. She has plans for both of us as you will see when you read her column here. I am honored that she mentions me in her column and I look forward to seeing her back on the courts soon.

While we have been busy the past few weeks with visits from grand children, we have continued to play tennis as much as possible and I continue to cycle whenever I can. Yesterday I discovered a new screen on my FitBit app that shows my heart rate during exercise. This screen shot is from today’s cycling session which consisted of a 10 minute warmup and then we continued to add gear while surging back and forth between 80 rpm and 90 rpm. As you can see our coach has taken the new concept of high intensity intervals to heart and this work out kept my heart rate in the cardio zone or above for almost the entire time. What I find most interesting is, despite my thought that I wouldn’t be able to walk out to the car, I did and now, 8 hours later, I feel great and have limited PD symptoms. There certainly seems be something that works when you exercise at a high level even for a short period of time. So if you have the opportunity to cycle or box or ????, do it! Exercise is the best prescription we can follow to slow the progression of PD (I know I haven’t said that recently 😆)

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

August 7, 2018
Oracle TEAM USA Wins the America’s Cup!

In one of the greatest comebacks in sports history, Oracle Team USA won eight straight races to win the 34th America’s Cup 9 races to 8 after being down 8-1 to Emirates Team New Zealand. Watching them race over the last three weeks you realize what team work it takes to sail a 72 foot catamaran with a 150 foot ‘wing’ sail at speeds over 40 miles an hour on San Francisco Bay. In fact, at the end of the winning race today, the Team USA helmsman Jimmy Spithill tweeted a comment from his interview after the win “On your own you’re nothing but when you’ve got a team like this around you, they make you great”.

I feel the same way about dealing with Parkinson’s, you need a team to make you great. The team includes your Movement Disorder Specialist, your regular doctor and should probably include a physical therapist, an occupational therapist, a speech therapist and maybe a nutrition specialist. As you can see, it takes a village to deal with the many symptoms and issues with Parkinson’s disease, just like raising a child.

But as important as your medical team is, the support of my wife, my children and their spouses, my grandchildren, my sisters and a multitude of relatives and friends is just as needed. I am lucky to have their support, words of encouragement and positive thoughts. As Jimmy Spithill said, I would be nothing without the support of my ‘TEAM’. Thank you all for all you do to help me weather this journey.

I’ve had about a week on the new dose of medication three times a day and continue to see good improvement in walking and balance.

This weekend our friends Tom and Marilyn visited from Colorado and we had a great time on the lake cruising, swimming, and catching this shot of the harvest moon rise on the water. A grand time was had by all.

One last reminder, don’t forget the Michael J Fox show premieres this Thursday 9/26/2013.

September 25, 2013

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

Category: Friends

Welcome Summer!

Me, a Tennis Hero?

Oracle TEAM USA Wins the America’s Cup!