• 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

My Book List

If you put Parkinson’s Disease into the Amazon.com search box, you will find over 6000 results!  Here are a few books that I have read along with a short review. Clicking on the link will take you to the Amazon.com page for that book where you can read a more in depth description and more reviews.

The Promise of Lithium 

Thomas Guttuso Jr MD

Dr Guttuso is a Movement Disorder Specialist in Buffalo NY and has authored an extremely interesting book about the benefits of over the counter lithium supplements for Parkinson’s and Alzheimer’s Disease.  The book is well researched and certainly makes a strong case for taking low dose lithium for PD.  Dr Guttuso has a small clinical trial going to support his research.

Parkinson’s and the B1 Therapy

Daphne Bryan, Phd

Daphne has successfully slowed the progression of her PD for over seven years following the High-Dose Thiamine (B1) Therapy Protocol developed and used by Dr Costantini, a neurologist in Italy.  Her book covers what B1 therapy is, why it can be successful, and how to use the therapy.   She covers how she successfully implemented the protocol and the problem of finding the right dose.  Recommended reading if you are considering the B1 Protocol.

The New Parkinson’s Disease Treatment Book  

Authored by J. ERIC AHLSKOG, PHD, MD .  Dr Ahlskog is a well known neurologist and movement disorder specialist who practices at the Mayo Clinic in Rochester MN.  This is the second edition of this excellent book.  He does a superb job explaining pd and the related issues and discusses what has worked for his patients and why.   Highly recommended!

Ending Parkinson’s Disease, A Prescription for Action

Co Authored by Ray Dorsey, MD, Todd  Sherer, PHD, Michael Okun, MD and Bastiaan Bloem, MD , PHD.  See my review of the book here.

The Peripatetic Pursuit of Parkinson Disease
Authored by The Parkinson’s Creative Collective –  a group of unpaid volunteer patients from nine states including Peggy Willocks from Tennessee.

This collection of articles by PD patients provides a wealth of information for dealing with the roadblocks that PD tries to throw at
us. Other reviewers have called it a support group between two covers for PwP’s and a window into living with PD for everyone else.  Well written and illustrated, divided into 8 sections, you will find it a great resource no matter when you were diagnosed.

Everybody Has a Window and Aisle Seat: Choosing a Positive Approach to Parkinson’s Disease by Mary Huston McLendon of Franklin, TN

As the title suggests, this books urges PD patients to take the window seat and focus out the window at the opportunities we are presented with, not sitting in the middle dwelling on the negative.  Mary was diagnosed 20 years ago and the book includes sdmany examples from her journey with PD. An uplifting book focusing on being positive no matter what.

Parkinson’s Treatment: 10 Secrets to a Happier Life  and
10 Breakthrough Therapies for Parkinson’s Disease
both by Dr Michael Okun MD, Head of the University of Florida Movement Disorders Clinic and Medical Director for the National Parkinson’s
Foundation.

Both of Dr. Okun’s books provide a positive approach to living with PD.  His team approach to PD care is the topic in the first book
while the follow up book recently published covers the new and upcoming therapies for treatment of PD.  Both books are well written and I often recommend them when contacted by newly diagnosed PwP’s. (We have been to the UF Movement Disorders Clinic and you can
read a blog post about the visit here.)

Brainstorms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

This book begins with the discovery of PD and goes on to detail the quest to find a cure. In addition to a concise history of the disease it also contains valuable insights from the author and his journey with PD. This is a well written book about the science of PD and the status of PD research by an Emmy, dupont and Peabody Award winning journalist.

Lucky Man: A Memoir by Michael J Fox

I recently heard it mentioned that being diagnosed with PD turned Michael J Fox into a writer.  This memoir covers his career and his the impact of being diagnosed with PD.  Open and honest, he details how he first attempted to hide the symptoms and ends discussing how he is a better and happier person since announcing the diagnosis.

Shake, Rattle and Roll with It – Living and Laughing with Parkinson’s by Vikki Claflin

This is a laugh out loud book and a fun read.  The book chronicles some of the funny adventures Vikki has had since her diagnosis (I’m guessing you will relate to at least one or more of her stories). Her ‘make lemonade’ approach when life hands you lemons is just the attitude needed to fight PD.  Vikki also blogs at Laugh Lines.

Other Posts

It Is What It Is

My Book List

If you put Parkinson’s Disease into the Amazon.com search box, you will find over 6000 results!  Here are a few books that I have read along with a short review. Clicking on the link will take you to the Amazon.com page for that book where you can read a more in depth description and more reviews.

The Promise of Lithium 

Thomas Guttuso Jr MD

Dr Guttuso is a Movement Disorder Specialist in Buffalo NY and has authored an extremely interesting book about the benefits of over the counter lithium supplements for Parkinson’s and Alzheimer’s Disease.  The book is well researched and certainly makes a strong case for taking low dose lithium for PD.  Dr Guttuso has a small clinical trial going to support his research.

Parkinson’s and the B1 Therapy

Daphne Bryan, Phd

Daphne has successfully slowed the progression of her PD for over seven years following the High-Dose Thiamine (B1) Therapy Protocol developed and used by Dr Costantini, a neurologist in Italy.  Her book covers what B1 therapy is, why it can be successful, and how to use the therapy.   She covers how she successfully implemented the protocol and the problem of finding the right dose.  Recommended reading if you are considering the B1 Protocol.

The New Parkinson’s Disease Treatment Book  

Authored by J. ERIC AHLSKOG, PHD, MD .  Dr Ahlskog is a well known neurologist and movement disorder specialist who practices at the Mayo Clinic in Rochester MN.  This is the second edition of this excellent book.  He does a superb job explaining pd and the related issues and discusses what has worked for his patients and why.   Highly recommended!

Ending Parkinson’s Disease, A Prescription for Action

Co Authored by Ray Dorsey, MD, Todd  Sherer, PHD, Michael Okun, MD and Bastiaan Bloem, MD , PHD.  See my review of the book here.

The Peripatetic Pursuit of Parkinson Disease
Authored by The Parkinson’s Creative Collective –  a group of unpaid volunteer patients from nine states including Peggy Willocks from Tennessee.

This collection of articles by PD patients provides a wealth of information for dealing with the roadblocks that PD tries to throw at
us. Other reviewers have called it a support group between two covers for PwP’s and a window into living with PD for everyone else.  Well written and illustrated, divided into 8 sections, you will find it a great resource no matter when you were diagnosed.

Everybody Has a Window and Aisle Seat: Choosing a Positive Approach to Parkinson’s Disease by Mary Huston McLendon of Franklin, TN

As the title suggests, this books urges PD patients to take the window seat and focus out the window at the opportunities we are presented with, not sitting in the middle dwelling on the negative.  Mary was diagnosed 20 years ago and the book includes sdmany examples from her journey with PD. An uplifting book focusing on being positive no matter what.

Parkinson’s Treatment: 10 Secrets to a Happier Life  and
10 Breakthrough Therapies for Parkinson’s Disease
both by Dr Michael Okun MD, Head of the University of Florida Movement Disorders Clinic and Medical Director for the National Parkinson’s
Foundation.

Both of Dr. Okun’s books provide a positive approach to living with PD.  His team approach to PD care is the topic in the first book
while the follow up book recently published covers the new and upcoming therapies for treatment of PD.  Both books are well written and I often recommend them when contacted by newly diagnosed PwP’s. (We have been to the UF Movement Disorders Clinic and you can
read a blog post about the visit here.)

Brainstorms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

This book begins with the discovery of PD and goes on to detail the quest to find a cure. In addition to a concise history of the disease it also contains valuable insights from the author and his journey with PD. This is a well written book about the science of PD and the status of PD research by an Emmy, dupont and Peabody Award winning journalist.

Lucky Man: A Memoir by Michael J Fox

I recently heard it mentioned that being diagnosed with PD turned Michael J Fox into a writer.  This memoir covers his career and his the impact of being diagnosed with PD.  Open and honest, he details how he first attempted to hide the symptoms and ends discussing how he is a better and happier person since announcing the diagnosis.

Shake, Rattle and Roll with It – Living and Laughing with Parkinson’s by Vikki Claflin

This is a laugh out loud book and a fun read.  The book chronicles some of the funny adventures Vikki has had since her diagnosis (I’m guessing you will relate to at least one or more of her stories). Her ‘make lemonade’ approach when life hands you lemons is just the attitude needed to fight PD.  Vikki also blogs at Laugh Lines.

Other Posts

My Book List

If you put Parkinson’s Disease into the Amazon.com search box, you will find over 6000 results!  Here are a few books that I have read along with a short review. Clicking on the link will take you to the Amazon.com page for that book where you can read a more in depth description and more reviews.

The Promise of Lithium 

Thomas Guttuso Jr MD

Dr Guttuso is a Movement Disorder Specialist in Buffalo NY and has authored an extremely interesting book about the benefits of over the counter lithium supplements for Parkinson’s and Alzheimer’s Disease.  The book is well researched and certainly makes a strong case for taking low dose lithium for PD.  Dr Guttuso has a small clinical trial going to support his research.

Parkinson’s and the B1 Therapy

Daphne Bryan, Phd

Daphne has successfully slowed the progression of her PD for over seven years following the High-Dose Thiamine (B1) Therapy Protocol developed and used by Dr Costantini, a neurologist in Italy.  Her book covers what B1 therapy is, why it can be successful, and how to use the therapy.   She covers how she successfully implemented the protocol and the problem of finding the right dose.  Recommended reading if you are considering the B1 Protocol.

The New Parkinson’s Disease Treatment Book  

Authored by J. ERIC AHLSKOG, PHD, MD .  Dr Ahlskog is a well known neurologist and movement disorder specialist who practices at the Mayo Clinic in Rochester MN.  This is the second edition of this excellent book.  He does a superb job explaining pd and the related issues and discusses what has worked for his patients and why.   Highly recommended!

Ending Parkinson’s Disease, A Prescription for Action

Co Authored by Ray Dorsey, MD, Todd  Sherer, PHD, Michael Okun, MD and Bastiaan Bloem, MD , PHD.  See my review of the book here.

The Peripatetic Pursuit of Parkinson Disease
Authored by The Parkinson’s Creative Collective –  a group of unpaid volunteer patients from nine states including Peggy Willocks from Tennessee.

This collection of articles by PD patients provides a wealth of information for dealing with the roadblocks that PD tries to throw at
us. Other reviewers have called it a support group between two covers for PwP’s and a window into living with PD for everyone else.  Well written and illustrated, divided into 8 sections, you will find it a great resource no matter when you were diagnosed.

Everybody Has a Window and Aisle Seat: Choosing a Positive Approach to Parkinson’s Disease by Mary Huston McLendon of Franklin, TN

As the title suggests, this books urges PD patients to take the window seat and focus out the window at the opportunities we are presented with, not sitting in the middle dwelling on the negative.  Mary was diagnosed 20 years ago and the book includes sdmany examples from her journey with PD. An uplifting book focusing on being positive no matter what.

Parkinson’s Treatment: 10 Secrets to a Happier Life  and
10 Breakthrough Therapies for Parkinson’s Disease
both by Dr Michael Okun MD, Head of the University of Florida Movement Disorders Clinic and Medical Director for the National Parkinson’s
Foundation.

Both of Dr. Okun’s books provide a positive approach to living with PD.  His team approach to PD care is the topic in the first book
while the follow up book recently published covers the new and upcoming therapies for treatment of PD.  Both books are well written and I often recommend them when contacted by newly diagnosed PwP’s. (We have been to the UF Movement Disorders Clinic and you can
read a blog post about the visit here.)

Brainstorms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palferman

This book begins with the discovery of PD and goes on to detail the quest to find a cure. In addition to a concise history of the disease it also contains valuable insights from the author and his journey with PD. This is a well written book about the science of PD and the status of PD research by an Emmy, dupont and Peabody Award winning journalist.

Lucky Man: A Memoir by Michael J Fox

I recently heard it mentioned that being diagnosed with PD turned Michael J Fox into a writer.  This memoir covers his career and his the impact of being diagnosed with PD.  Open and honest, he details how he first attempted to hide the symptoms and ends discussing how he is a better and happier person since announcing the diagnosis.

Shake, Rattle and Roll with It – Living and Laughing with Parkinson’s by Vikki Claflin

This is a laugh out loud book and a fun read.  The book chronicles some of the funny adventures Vikki has had since her diagnosis (I’m guessing you will relate to at least one or more of her stories). Her ‘make lemonade’ approach when life hands you lemons is just the attitude needed to fight PD.  Vikki also blogs at Laugh Lines.

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