• Welcome 2021!!

    Happy New Year!!  I don’t know about you but I have never been so happy to leave a year behind.  It has been a year of trials and tribulations and wrinkled hands from so much washing.  We have averaged  5 – 7 books per week since March, lived through almost 3 months with no tennis and discovered Zoom can be used for just about everything from exercise classes to family gatherings.  

    We have survived not eating out unless we can eat outside, wearing a mask everywhere you go, and not hugging.  We go nowhere except to the grocery store and the tennis court which has reduced gasoline use and carbon in the air.  

    I could go on and on about what we will not miss about 2020 but we did learn some lesson from 2020. I received this list from a good friend and reader of this blog  and I thought I would pass it along to you all.  

    It has been about 5 months since  my last post but with the COVID-19 restrictions there is very little news to report.   As noted above, we have been playing tennis with a small group (our pod) and the ever resourceful Pedaling for PD instructor Kathy has been teaching classes 3 days a week via Zoom.  I purchased a spin bike for home in order to keep up with the exercise as much a possible.

    I finally had a face to face visit with my neurologist in October which went well with no changes to medications or routines.  I also met with a speech pathologist and we decided the Speak Out! program would be beneficial as my voice has been getting softer and softer requiring me to repeat myself often.

    Speak Out! is a program where you meet one on one  with the speech pathologists three times  a week for four weeks  and learn to speak with intent!  The sessions were very focused on improving the volume of my voice using breathing exercises, visualising projecting my voice and practicing going from low to high and back while saying ahhhh.  In addition to the voice exercises, they also have cognitive drills for each lesson and a reading aloud exercise.  I found the program to be very beneficial and I have continued to work at speaking with intent everyday. 

    We spent the holidays at home with no family visitors for the first time that we can remember.  Hopefully next year we can return to normal as the vaccine is rolled out.

    Speaking of the vaccine, through a combination of serendipitous events, Mara and I received the first Moderna shot last week and are scheduled for the second shot in early February.  Sarasota county opened appointments for persons 65 and over using an online reservation system.  Because I had signed up for text messages from the county back in March, I received a text message that they were taking appointments and was able to schedule both of us before they were filled up.  The process worked very smoothly when we arrived at the County Health Department.  While there was a long line, it turned out they were people without an appointment hoping to get the vaccine  by waiting. 

    Since we had an appointment, we went to the head of the line and were in and out in approximately an hour including a 15 – 20 minute observation period after the shot.  So far we have had no major complications beyond some pain at the injection site.  I will update you when we get the second shot as I have heard that is when they expect more minor complications will occur since your body has been making antibodies to fight the virus.

    A reminder – if you haven’t already joined PD Avengers, please click here and add your name to the list of supporters.  We are hoping for 1 million supporters by 2022 and together we are fighting to END PARKINSON’S!

    I hope this post finds you healthy and not totally bored out of your mind.  Please mask up, practice social distancing and stay safe! 

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

     

      

     

  • Join PD Avengers & Let’s End PD!

    Last  month  marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist.   During the past 7 years  I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD,  and moved to Florida.

    Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD.  A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive.  The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming  pandemic and action needs to be taken to end PD. You can read my blog post about the book here.

    Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat)  a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s.  They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s.  I have added my voice and have become a PD Avenger and I hope you will too!  You can find out more information and add your voice at PDAdvengers.com.  Together we can END PARKINSON’S!!

  • Sample Posts #4

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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.