• Where in the world is Tom

    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.

IT IS WHAT IT IS!

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!

Other Posts

IT IS WHAT IT IS!

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!

Other Posts

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

     

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