• Nine Years

    Today marks the 9th anniversary of this blog. Which means that July 24th marked the 9th year since I was diagnosed with PD. Those of you who have followed my blog know that usually I write a post on the anniversary of my diagnoses and I started this post a few days before the 24th but I was unable to complete it until today.. Read on to find out why.

    My son and family recently moved to the Washington DC area and they invited us to come up and enjoy the Fourth of July. We had a wonderful trip and visit with Ryan and Sarah and Sarah’s sister’s family who had just been assigned to Colorado Springs and were leaving the day after the 4th. We also got to visit with our Grandson Garrett who started his internal medicine residency at Georgetown the week before.

    We stayed downtown for the fourth which made it easy to watch the fabulous fireworks display. On the fifth we went to the Kennedy Center to see To Kill a Mockingbird which was wonderful and an item on our bucket list. We retuned on the 7th and on the 10th, I tested positive for Covid!

    It started with a sore throat , then a mild fever and a headache and complete fatigue. I felt like I had not taken my medication for days and now I couldn’t hardly move. The next day the sore throat became so severe I thought I had added Strep throat to the COVID but no it was just another symptom of Omicron Covid.

    By the 7th day the sore throat was gone, the headaches were just once in awhile and I tested negative. But the fatigue and lack of muscle strength continued and I was often unable to get up from a chair without assistance let alone exercise for the last 4 weeks. In addition to no get up and go I had no desire to write my usual “It’s been x years since my diagnosis” post until today! I tried several times but I would stare at the screen waiting for the words to appear like magic.

    Yesterday I was able to attend our 1 hour tennis clinic and today I played 1 1/2 hours of doubles tennis and I feel normal for the first time in 4 weeks. So in addition to starting to exercise again, I have also started trying to catch up with my to do list with this blog being item number one.

    Now that I feel like myself again, I have to say I am pleased with my lack of PD progression this year. About a year ago I spent some time plotting my on and off periods during the day using a program that showed my Levodopa level over 24 hours. As a result I determined that I was taking too much Levodopa and I needed to increase he time between doses of Rytary from 4 hours to 5 hours which resulted in needing only 4 doses per day instead of 5! So I have been on that schedule for almost a year with limited impact on my mobility even though I decreased the amount of Levodopa I take by 2 capsules.

    So, until COVID, it has been a positive year on the PD front. I am keeping my fingers crossed 🤞 that I can continue to slow my progression this year while maintaining my current medication regimen. I hope that today marks the end of the COVID fatigue and lack of energy issues, i am ready to move on!

    And finally, If you haven’t heard about the End Parkinson’s bill introduced last week in Congress, please go to this link and send a letter to your congress person asking for their support. Thanks!!

  • Today is Parkinson’s Awareness Day!

    The new symbol for PD Awareness is The Spark. Developed by a collaboration of organizations in over 80 countries, The Spark will mobilize our community and Spark change!

    “This World Parkinson’s Day, we’re calling on those impacted by the disease to stand up, speak out and unite to end Parkinson’s. We can break the stigma around our disease, lead the call to fund medical breakthroughs and together we can put Parkinson’s in the past.”

    PD Avengers website 4 -11-2022

    Click here to read more about The Spark on the PD Avengers website and view the actions being taken to grow Parkinson’s Awareness.

    Also in support of PD Awareness Parkinson’s Life, the newsletter of the European PD Association, is Busting Parkinson’s disease myths with a new infographic to call attention to just four of the misconceptions people have about Parkinson’s Disease.

    As pointed out in the book “Ending Parkinson’s”, PD is epidemic and growing faster every year.

    There is currently no cure for Parkinson’s Disease. Research must be funded to find a cure.

    Parkinson’s can happen at any age – support research to find a cure!

    This myth needs to be busted!! Tremor is one of the more visible symptoms of PD but not all of us have tremor. Instead we deal with stiffness, uneven gait, and balance issues and more, plus a multitude of non motor symptoms such as sleep issues, fatigue, pain, constipation, drooling, soft voice and tiny handwriting.

    If you haven’t joined PD Avengers, please click here and add your name to the cause. You don’t have to be a PwP to join and your support will help SPARK awareness of Parkinson’ s disease!

  • It’s Giving Tuesday!

    A quick reminder that tomorrow is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause. Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities. It is a great opportunity to make a difference.

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.

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.

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.