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.

and it’s way past time for a catch up blog post. I think the last post of substance was about Giving Tuesday at the end of November, 2015! So this is my attempt to condense a couple of months of activity into one post. Not long after the Giving Tuesday post, we made an unscheduled trip to Traverse City, MI to help out Mara’s sister with her used book store. We have no retail experience and it’s been over ten years since I’ve worked a 40+ hour shift but we had a great time taking care of business. If you are in the Traverse City area, be sure and stop in at her store The Bookie Joint downtown just off Front Street. (yep, a shameless plug!)

We got home just in time to get ready for Christmas and enjoyed the holidays with our family and then it was time to start getting ready for THE BEACH! We arrived last Saturday and were awakened at 3am Sunday morning by the sounds of a tornado (I’ll be darned if it didn’t sound just like a train). Luckily no one in our complex was injured but a lot of the units had windows and screens damaged and a lot of cars suffered broken glass and other damage. We hadn’t planned on being part of the effort to prove the theory of global warning but we are thankful that no one was hurt and our unit and car were not damaged.

On the Parkinson’s front, I was appointed webmaster for the East Tennessee Parkinson’s Support Group and spent a lot of free time during December learning WordPress and upgrading the site to the latest version. When that wrapped up early in January I spent my free time updating the Tennessee Parkinson’s Disease Resource site with maps and adding new information.

Somehow I also managed to take an exercise holiday and I began to notice my symptoms were getting worse, particularly the brady kinesia (ridgity). Since we arrived in Florida, I have been walking at least an hour a day and we have signed up for two Parkinson’s dance classes We are also planning to sign up for additional exercise classes at the Neuro Challenge Institute, a great resource for Parkinson’s Patients in the greater Sarasota area. I am already noticing improvement which once again proves how important exercise is for PWP’s!

We also signed up for a weekly Let Your Yoga Dance class. We were introduced to Let Your Yoga Dance while at the Kripalu retreat in October 2013 and this class reunited us with instructor/founder Megha and Joel and Melissa whom we first met at the retreat and meet up with every year while in Sarasota. Our first class was yesterday and Megha had us doing deep breathing exercises, stretching and dancing in no time. It is a great class that not only provides exercise but brings ‘healing through joy’.

Coming up we will attend the Neuro Challenge Insitute annual Parkinson’s Symposium on Saturday where one of the topics to be covered is the Tasigna trial conducted at Georgetown University. Tasigna is a leukemia drug that appears to stop or reverse some of the PD symptoms during a small test involving 12 Parkinson’s patients. I am looking forward to hearing more about the first trial and the results and will provide more information in the next post.

So there you have it, a short version of a very busy couple of months. Oh, did I mention I am still wearing my smartwatch and providing data for the Fox Insight Trial? If you haven’t signed up you can do it here, and don’t forget to also sign up for Fox Trial Finder at the same time and join over 52,000 of us who have already signed up!

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

Tag: Support Groups

It’s a New Year…

and it’s way past time for a catch up blog post. I think the last post of substance was about Giving Tuesday at the end of November, 2015! So this is my attempt to condense a couple of months of activity into one post. Not long after the Giving Tuesday post, we made an unscheduled trip to Traverse City, MI to help out Mara’s sister with her used book store. We have no retail experience and it’s been over ten years since I’ve worked a 40+ hour shift but we had a great time taking care of business. If you are in the Traverse City area, be sure and stop in at her store The Bookie Joint downtown just off Front Street. (yep, a shameless plug!)

We got home just in time to get ready for Christmas and enjoyed the holidays with our family and then it was time to start getting ready for THE BEACH! We arrived last Saturday and were awakened at 3am Sunday morning by the sounds of a tornado (I’ll be darned if it didn’t sound just like a train). Luckily no one in our complex was injured but a lot of the units had windows and screens damaged and a lot of cars suffered broken glass and other damage. We hadn’t planned on being part of the effort to prove the theory of global warning but we are thankful that no one was hurt and our unit and car were not damaged.

On the Parkinson’s front, I was appointed webmaster for the East Tennessee Parkinson’s Support Group and spent a lot of free time during December learning WordPress and upgrading the site to the latest version. When that wrapped up early in January I spent my free time updating the Tennessee Parkinson’s Disease Resource site with maps and adding new information.

Somehow I also managed to take an exercise holiday and I began to notice my symptoms were getting worse, particularly the brady kinesia (ridgity). Since we arrived in Florida, I have been walking at least an hour a day and we have signed up for two Parkinson’s dance classes We are also planning to sign up for additional exercise classes at the Neuro Challenge Institute, a great resource for Parkinson’s Patients in the greater Sarasota area. I am already noticing improvement which once again proves how important exercise is for PWP’s!

We also signed up for a weekly Let Your Yoga Dance class. We were introduced to Let Your Yoga Dance while at the Kripalu retreat in October 2013 and this class reunited us with instructor/founder Megha and Joel and Melissa whom we first met at the retreat and meet up with every year while in Sarasota. Our first class was yesterday and Megha had us doing deep breathing exercises, stretching and dancing in no time. It is a great class that not only provides exercise but brings ‘healing through joy’.

Coming up we will attend the Neuro Challenge Insitute annual Parkinson’s Symposium on Saturday where one of the topics to be covered is the Tasigna trial conducted at Georgetown University. Tasigna is a leukemia drug that appears to stop or reverse some of the PD symptoms during a small test involving 12 Parkinson’s patients. I am looking forward to hearing more about the first trial and the results and will provide more information in the next post.

So there you have it, a short version of a very busy couple of months. Oh, did I mention I am still wearing my smartwatch and providing data for the Fox Insight Trial? If you haven’t signed up you can do it here, and don’t forget to also sign up for Fox Trial Finder at the same time and join over 52,000 of us who have already signed up!

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

January 20, 2016
Dancing and Singing at the Beach!

It’s been a busy couple of weeks and I know everyone is waiting for an update from the beach 🙂 As I mentioned in the last post we were planning a Kripalu mini-reunion with Joel and Melisa and Marcia and Erwin and we were able to get together for lunch and then a nice visit while sitting on the beach. As Marcia said later, “..it felt like connecting with very close family.” We all caught up on what has happened since October 2013 which, of course, included what medications we were taking, comparing notes on doctor visits, etc. Marcia and Erwin along with another couple from our Kripalu visit are staging the first Pocono FoxTrot 5K for Parkinson’s with the proceeds going to the Michael J Fox Foundation. If you are going to be in the Pocono’s area June 20th, you can sign up for the 5K run/walk, the 1 mile community walk or the Kids 1 mile run/walk at this link.

A few days later, we attended our second Parkinson’s Cafe event, a backstage tour of the Sarasota Ballet. This tour included a chance to watch the ballet master conduct training for about 30 cast members and students which was fascinating, they just flew across the room executing jumps and turns like they had wings!After the tour, we participated in a PD in Motion class, a dance/exercise class for PD patients which is conducted every week by the Neuro Challenge Foundation here in Sarasota. The program was started in NYC and has expanded nationwide. As you can see, most of the exercises were done sitting down and involved moving legs, arms, and torso. We really enjoyed it and we attended the next class and will catch a couple more before we leave the beach.

And this week we attended a choral singing class, also sponsored by the Neuro Challenge Foundation. Called the Off Key Choir about 45-50 of us sang some Irish tunes since it was St Patrick’s day, and, by the end we did it in 4 part harmony! This was a great way to learn breathing and speech techniques to help with the soft voice of PwP. It was great fun and we are happy Merrily and Robert Manthey told us about it and invited us to attend.

We met Merrily at the Parkinson’s Cafe event and she told us how a year ago, she was in a wheelchair but no longer needs it after participating in the exercise programs provided by the Sarasota Memorial Hospital Healthfit Gym. In fact her story was featured in the February 2015 edition of Sarasota Magazine. Merrily is an outstanding example of how exercise can help fight PD. Mara and I are convinced that increasing my exercise time has reduced my symptoms and I’m looking at other exercise programs that might provide additional benefit, you can expect to hear more about that project in the next post.

We also had a nice visit with Tom and Marilyn, our friends from Colorado, the weather was great and we got in our long walks every morning and beach time every afternoon and took in a play at the Aslo Theater. Good Times, Good Times!

Recently Sage Bionetworks announced an app called mPower, as part of the Apple iPhone Research Kit. Currently only available for the iPhone, mPower will gather information daily from users which will feed into a database for analysis. At the same time the Michael J Fox Foundation announced Fox Insight, an online clinical trial for both PwP’s and those without PD who will complete a series of surveys every 90 days regarding their health, symptoms, medications, etc. You can link it to your Fox Trial Finder profile during the sign up process and soon you will also be able to link to the mPower app information. It is easy to enroll and takes only about 20 – 30 minutes to complete the surveys plus you can print a report of the results to take along on Doctor visits.

Until next time..oh wait I forgot to remind you to sign up for Fox Trial Finder and now Fox Insight!

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

March 18, 2015
Partners in Parkinson’s – The Sequel
This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.

This year’s event followed the same format at last year with the morning panel sessions covering:
- The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
- Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
- Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.
The afternoon sessions included the breakout sessions:
- Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
- Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
- I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.
Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD.
The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.

As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.

We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.

It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.

Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.

“It does not matter how slowly you go as long as you do not stop.” – Confucius
March 1, 2015

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

Tag: Support Groups

It’s a New Year…

Dancing and Singing at the Beach!

Partners in Parkinson’s – The Sequel