• 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!

Now What?

Click here to print

I am often asked to talk with a friend or relative of a friend who has recently been diagnosed with Parkinson’s Disease. This document is a part of the information I share with newly diagnosed PwPs (Persons with Parkinson’s).

What to Do Next?

As I have learned firsthand and from discussions with many other PwPs, getting the diagnosis usually means, “I think you have PD, take this medication and come back in 90 days. If the symptoms are better, it’s PD.” (This may change soon with the discovery of at least 2 biomarkers for PD)

So, off you go with no information and a prescription. So, what to do next? In my case, I  immediately started the quest for more information about the disease, the medications used to treat it, and ongoing research. You have probably done the same; perhaps that’s how you found this post.

I have found the Michael J Fox Foundation,  the Parkinson’s Disease Foundation and the Davis Phinney Foundation to be particularly informative and responsive to the needs of PwPs. Links to these organizations and others can be found by clicking on the Resources for PD tab on my blog. I have also included links to various organizations  and publications from these organizations at the bottom of this document.

An excellent resource is the Parkinson’s 360 – Real Talk for Patients and Families website.  This initiative was recently launched by the Fox Foundation and on the website you will find a digital book, short films featuring people with Parkinson’s at various points in their journey, seven tenets for life with PD, a whiteboard video explaining the basics of the disease and tools for living well with Parkinson’s. I highly recommend this site and the booklet they have available for download.  The Parkinson’s Foundation has a similar document “What You and Your Family Should Know about PD”, also available for download. 

The next thing I did was start my blog, It Is What It Is, to chronicle my journey with PD and hopefully provide information for other PwPs. So, in addition to posts about living with PD, you will also find tabs that include links to resources for PD, a link to a PD Glossary, a list of other blogs I follow, and a list of books I have read. (I highly recommend the books by Dr. Okun and Dr. Ahlskog  for newly diagnosed patients.)  

A Few Other Recommendations

Here are some recommendations I’ve developed after 11+ years of being a PwP, researching PD, attending many conferences, expos, and other events, and talking with other PwPs.

The most important thing we have learned (as you will see on my blog) is you can’t get too much exercise. Many studies now show that 2.5 hours of exercise a week can slow the progression of PD. And it can be any exercise: walking, running, weight lifting, cycling, yoga, tai chi, chair exercises, swimming, boxing, dancing, and more. If at all possible, get up and exercise!

The Davis Phinney site has some excellent free resources for exercising, including videos, workbooks, and more. (See the attached link page.) I am a big fan of the Parkinson’s Cycling Class conducted at local YMCAs nationwide, along with playing tennis as much as possible. Other popular exercises are PD in Motion dance classes and Rock Steady Boxing classes held at various venues around the US.

EDITORIAL NOTE: I am not a medical practitioner. Before starting any exercise program, you should first discuss your plans with a qualified healthcare professional who is aware of your medical history.

If you are not seeing a Movement Disorder Specialist, you should try to find one. I know it’s just what we all need, another doctor, but they are neurologists with a fellowship in Movement Disorders, and it has been shown that they provide the best care for PwPs. The Movement Disorder Society has a physician finder application on their site,

Non Motor Symptoms

While many of you are familiar with the cardinal motor symptoms of PD  that are used to diagnose PD:

  • Stiffness (rigidity): muscle stiffness detected by a doctor on examination
  • Slowness (bradykinesia): decrease in spontaneous and voluntary movement; may include slower walking, less arm swinging while walking, or decreased blinking or facial expression
  • Resting tremor: a rhythmic, involuntary shaking that occurs in a finger, hand or limb when it’s relaxed and disappears during voluntary movement.

I highly recommend that you take some time to learn about the ‘non-motor symptoms’ of PD, often called the invisible symptoms of PD.  They can significantly impact your quality of life. They include facial masking, tiny handwriting, lack of smell, constipation, drooling, and many more. Click here for a list from MJ Fox Foundation. 

Non motor symptoms will sometimes help explain a reaction to an event that is different than you expect. For example, facial masking (inability to smile or look interested) makes it difficult for others to see your reaction to something they have told you and may cause them to think you don’t care or aren’t interested, which may not be the case. Another common non-motor symptom is a soft voice, which causes people to ask you to repeat your comment or question. There are several  PT classes such as  Big and Loud or Speak Out!  that can help with the soft voice problem.

Participate in a Clinical Trial

If you are interested in participating in a clinical trial, this is the time to see what is available. Dr. Hauser, a Movement Disorder Specialist at the University of South Florida, calls it the ‘Golden Year’ because often the patient is not on some of the medications which are normally a limiting factor in being accepted for a clinical trial.. You can read his paper here.

Michael J. Fox promotes clinical trials with the MJFF Clinical Trial Finder application, where you input your location, symptoms, and how far you will travel for a clinical trial. The application then tries to match you to relevant trials. They also include internet trials where you don’t need to travel to participate.   

Join the Fox Insight Trial, which is a web-based longitudinal study to track the progression of PD among over 55,000 persons so far. The data from this trial is anonymized and provided to researchers to help define PD. 

And finally, consider joining the MJFox Foundation Progression Markers Initiative (PPMI).  This ongoing initiative follows PwP and controls over time and has resulted in a huge database of information for research.  In fact the recent announcement of biomarkers for PD was the result of research done with this data. These biomarkers will improve diagnosis and research in the treatment of PD.

It is important to remember that there is a lot of PD research going on and a lot of good things happening in the world of PD. There have been 10+ new medications or treatments approved just in the 11 years since my diagnosis, and several more are in the pipeline.

You are not alone! There are support groups both in-person and online, and there are hotlines at all of the major organizations staffed to answer your questions and concerns. We are all in this together, and together we will defeat Parkinson’s Disease!

SOME RECOMMENDED LINKS:

Parkinson’s Foundation 

WhatYouAndYourFamilyShouldKnow.pdf

Medications.pdf

Fitness_Counts.pdf

Caring_and_Coping.pdf  Excellent document for caregivers.

Michael J Fox Foundation

Parkinson’s360

Michael Fox Clinical Trial Finder

Michael J Fox Insight

Davis Phinney Foundation  

Parkinson’s 101  Understanding PD

Living Well with PD (Every Victory Counts Manual)

PD Exercise Essentials (video)

Some recommended Blogs to follow (besides mine of course!)

Science of Parkinson’s – a great resource about the latest research in PD presented in plain english.

Twitchy Woman – Sharon Krischer’s blog provides excellent posts about living with PD.  She is a strong advocate for meeting the needs of women with PD and has been encouraged by the Parkinson’s Foundation and Michael J Fox Foundation to expand her concepts for women and PD groups.  

Parkinson’s Humor – by Yuma Bev – humorous views of living with PD 

Journey with Parkinson’s by Frank Church – former medical researcher/ teacher with PD 

These are just a few of the many listed under the ‘my blog list’ tab on my blog It Is What It Is!

If you want to keep up with PD news, consider subscribing to one or more of the National Foundation blog sites or the news aggregator Parkinson’s News Today

Other Posts

IT IS WHAT IT IS!

Now What?

Click here to print

I am often asked to talk with a friend or relative of a friend who has recently been diagnosed with Parkinson’s Disease. This document is a part of the information I share with newly diagnosed PwPs (Persons with Parkinson’s).

What to Do Next?

As I have learned firsthand and from discussions with many other PwPs, getting the diagnosis usually means, “I think you have PD, take this medication and come back in 90 days. If the symptoms are better, it’s PD.” (This may change soon with the discovery of at least 2 biomarkers for PD)

So, off you go with no information and a prescription. So, what to do next? In my case, I  immediately started the quest for more information about the disease, the medications used to treat it, and ongoing research. You have probably done the same; perhaps that’s how you found this post.

I have found the Michael J Fox Foundation,  the Parkinson’s Disease Foundation and the Davis Phinney Foundation to be particularly informative and responsive to the needs of PwPs. Links to these organizations and others can be found by clicking on the Resources for PD tab on my blog. I have also included links to various organizations  and publications from these organizations at the bottom of this document.

An excellent resource is the Parkinson’s 360 – Real Talk for Patients and Families website.  This initiative was recently launched by the Fox Foundation and on the website you will find a digital book, short films featuring people with Parkinson’s at various points in their journey, seven tenets for life with PD, a whiteboard video explaining the basics of the disease and tools for living well with Parkinson’s. I highly recommend this site and the booklet they have available for download.  The Parkinson’s Foundation has a similar document “What You and Your Family Should Know about PD”, also available for download. 

The next thing I did was start my blog, It Is What It Is, to chronicle my journey with PD and hopefully provide information for other PwPs. So, in addition to posts about living with PD, you will also find tabs that include links to resources for PD, a link to a PD Glossary, a list of other blogs I follow, and a list of books I have read. (I highly recommend the books by Dr. Okun and Dr. Ahlskog  for newly diagnosed patients.)  

A Few Other Recommendations

Here are some recommendations I’ve developed after 11+ years of being a PwP, researching PD, attending many conferences, expos, and other events, and talking with other PwPs.

The most important thing we have learned (as you will see on my blog) is you can’t get too much exercise. Many studies now show that 2.5 hours of exercise a week can slow the progression of PD. And it can be any exercise: walking, running, weight lifting, cycling, yoga, tai chi, chair exercises, swimming, boxing, dancing, and more. If at all possible, get up and exercise!

The Davis Phinney site has some excellent free resources for exercising, including videos, workbooks, and more. (See the attached link page.) I am a big fan of the Parkinson’s Cycling Class conducted at local YMCAs nationwide, along with playing tennis as much as possible. Other popular exercises are PD in Motion dance classes and Rock Steady Boxing classes held at various venues around the US.

EDITORIAL NOTE: I am not a medical practitioner. Before starting any exercise program, you should first discuss your plans with a qualified healthcare professional who is aware of your medical history.

If you are not seeing a Movement Disorder Specialist, you should try to find one. I know it’s just what we all need, another doctor, but they are neurologists with a fellowship in Movement Disorders, and it has been shown that they provide the best care for PwPs. The Movement Disorder Society has a physician finder application on their site,

Non Motor Symptoms

While many of you are familiar with the cardinal motor symptoms of PD  that are used to diagnose PD:

  • Stiffness (rigidity): muscle stiffness detected by a doctor on examination
  • Slowness (bradykinesia): decrease in spontaneous and voluntary movement; may include slower walking, less arm swinging while walking, or decreased blinking or facial expression
  • Resting tremor: a rhythmic, involuntary shaking that occurs in a finger, hand or limb when it’s relaxed and disappears during voluntary movement.

I highly recommend that you take some time to learn about the ‘non-motor symptoms’ of PD, often called the invisible symptoms of PD.  They can significantly impact your quality of life. They include facial masking, tiny handwriting, lack of smell, constipation, drooling, and many more. Click here for a list from MJ Fox Foundation. 

Non motor symptoms will sometimes help explain a reaction to an event that is different than you expect. For example, facial masking (inability to smile or look interested) makes it difficult for others to see your reaction to something they have told you and may cause them to think you don’t care or aren’t interested, which may not be the case. Another common non-motor symptom is a soft voice, which causes people to ask you to repeat your comment or question. There are several  PT classes such as  Big and Loud or Speak Out!  that can help with the soft voice problem.

Participate in a Clinical Trial

If you are interested in participating in a clinical trial, this is the time to see what is available. Dr. Hauser, a Movement Disorder Specialist at the University of South Florida, calls it the ‘Golden Year’ because often the patient is not on some of the medications which are normally a limiting factor in being accepted for a clinical trial.. You can read his paper here.

Michael J. Fox promotes clinical trials with the MJFF Clinical Trial Finder application, where you input your location, symptoms, and how far you will travel for a clinical trial. The application then tries to match you to relevant trials. They also include internet trials where you don’t need to travel to participate.   

Join the Fox Insight Trial, which is a web-based longitudinal study to track the progression of PD among over 55,000 persons so far. The data from this trial is anonymized and provided to researchers to help define PD. 

And finally, consider joining the MJFox Foundation Progression Markers Initiative (PPMI).  This ongoing initiative follows PwP and controls over time and has resulted in a huge database of information for research.  In fact the recent announcement of biomarkers for PD was the result of research done with this data. These biomarkers will improve diagnosis and research in the treatment of PD.

It is important to remember that there is a lot of PD research going on and a lot of good things happening in the world of PD. There have been 10+ new medications or treatments approved just in the 11 years since my diagnosis, and several more are in the pipeline.

You are not alone! There are support groups both in-person and online, and there are hotlines at all of the major organizations staffed to answer your questions and concerns. We are all in this together, and together we will defeat Parkinson’s Disease!

SOME RECOMMENDED LINKS:

Parkinson’s Foundation 

WhatYouAndYourFamilyShouldKnow.pdf

Medications.pdf

Fitness_Counts.pdf

Caring_and_Coping.pdf  Excellent document for caregivers.

Michael J Fox Foundation

Parkinson’s360

Michael Fox Clinical Trial Finder

Michael J Fox Insight

Davis Phinney Foundation  

Parkinson’s 101  Understanding PD

Living Well with PD (Every Victory Counts Manual)

PD Exercise Essentials (video)

Some recommended Blogs to follow (besides mine of course!)

Science of Parkinson’s – a great resource about the latest research in PD presented in plain english.

Twitchy Woman – Sharon Krischer’s blog provides excellent posts about living with PD.  She is a strong advocate for meeting the needs of women with PD and has been encouraged by the Parkinson’s Foundation and Michael J Fox Foundation to expand her concepts for women and PD groups.  

Parkinson’s Humor – by Yuma Bev – humorous views of living with PD 

Journey with Parkinson’s by Frank Church – former medical researcher/ teacher with PD 

These are just a few of the many listed under the ‘my blog list’ tab on my blog It Is What It Is!

If you want to keep up with PD news, consider subscribing to one or more of the National Foundation blog sites or the news aggregator Parkinson’s News Today

Other Posts

Now What?

Click here to print

I am often asked to talk with a friend or relative of a friend who has recently been diagnosed with Parkinson’s Disease. This document is a part of the information I share with newly diagnosed PwPs (Persons with Parkinson’s).

What to Do Next?

As I have learned firsthand and from discussions with many other PwPs, getting the diagnosis usually means, “I think you have PD, take this medication and come back in 90 days. If the symptoms are better, it’s PD.” (This may change soon with the discovery of at least 2 biomarkers for PD)

So, off you go with no information and a prescription. So, what to do next? In my case, I  immediately started the quest for more information about the disease, the medications used to treat it, and ongoing research. You have probably done the same; perhaps that’s how you found this post.

I have found the Michael J Fox Foundation,  the Parkinson’s Disease Foundation and the Davis Phinney Foundation to be particularly informative and responsive to the needs of PwPs. Links to these organizations and others can be found by clicking on the Resources for PD tab on my blog. I have also included links to various organizations  and publications from these organizations at the bottom of this document.

An excellent resource is the Parkinson’s 360 – Real Talk for Patients and Families website.  This initiative was recently launched by the Fox Foundation and on the website you will find a digital book, short films featuring people with Parkinson’s at various points in their journey, seven tenets for life with PD, a whiteboard video explaining the basics of the disease and tools for living well with Parkinson’s. I highly recommend this site and the booklet they have available for download.  The Parkinson’s Foundation has a similar document “What You and Your Family Should Know about PD”, also available for download. 

The next thing I did was start my blog, It Is What It Is, to chronicle my journey with PD and hopefully provide information for other PwPs. So, in addition to posts about living with PD, you will also find tabs that include links to resources for PD, a link to a PD Glossary, a list of other blogs I follow, and a list of books I have read. (I highly recommend the books by Dr. Okun and Dr. Ahlskog  for newly diagnosed patients.)  

A Few Other Recommendations

Here are some recommendations I’ve developed after 11+ years of being a PwP, researching PD, attending many conferences, expos, and other events, and talking with other PwPs.

The most important thing we have learned (as you will see on my blog) is you can’t get too much exercise. Many studies now show that 2.5 hours of exercise a week can slow the progression of PD. And it can be any exercise: walking, running, weight lifting, cycling, yoga, tai chi, chair exercises, swimming, boxing, dancing, and more. If at all possible, get up and exercise!

The Davis Phinney site has some excellent free resources for exercising, including videos, workbooks, and more. (See the attached link page.) I am a big fan of the Parkinson’s Cycling Class conducted at local YMCAs nationwide, along with playing tennis as much as possible. Other popular exercises are PD in Motion dance classes and Rock Steady Boxing classes held at various venues around the US.

EDITORIAL NOTE: I am not a medical practitioner. Before starting any exercise program, you should first discuss your plans with a qualified healthcare professional who is aware of your medical history.

If you are not seeing a Movement Disorder Specialist, you should try to find one. I know it’s just what we all need, another doctor, but they are neurologists with a fellowship in Movement Disorders, and it has been shown that they provide the best care for PwPs. The Movement Disorder Society has a physician finder application on their site,

Non Motor Symptoms

While many of you are familiar with the cardinal motor symptoms of PD  that are used to diagnose PD:

  • Stiffness (rigidity): muscle stiffness detected by a doctor on examination
  • Slowness (bradykinesia): decrease in spontaneous and voluntary movement; may include slower walking, less arm swinging while walking, or decreased blinking or facial expression
  • Resting tremor: a rhythmic, involuntary shaking that occurs in a finger, hand or limb when it’s relaxed and disappears during voluntary movement.

I highly recommend that you take some time to learn about the ‘non-motor symptoms’ of PD, often called the invisible symptoms of PD.  They can significantly impact your quality of life. They include facial masking, tiny handwriting, lack of smell, constipation, drooling, and many more. Click here for a list from MJ Fox Foundation. 

Non motor symptoms will sometimes help explain a reaction to an event that is different than you expect. For example, facial masking (inability to smile or look interested) makes it difficult for others to see your reaction to something they have told you and may cause them to think you don’t care or aren’t interested, which may not be the case. Another common non-motor symptom is a soft voice, which causes people to ask you to repeat your comment or question. There are several  PT classes such as  Big and Loud or Speak Out!  that can help with the soft voice problem.

Participate in a Clinical Trial

If you are interested in participating in a clinical trial, this is the time to see what is available. Dr. Hauser, a Movement Disorder Specialist at the University of South Florida, calls it the ‘Golden Year’ because often the patient is not on some of the medications which are normally a limiting factor in being accepted for a clinical trial.. You can read his paper here.

Michael J. Fox promotes clinical trials with the MJFF Clinical Trial Finder application, where you input your location, symptoms, and how far you will travel for a clinical trial. The application then tries to match you to relevant trials. They also include internet trials where you don’t need to travel to participate.   

Join the Fox Insight Trial, which is a web-based longitudinal study to track the progression of PD among over 55,000 persons so far. The data from this trial is anonymized and provided to researchers to help define PD. 

And finally, consider joining the MJFox Foundation Progression Markers Initiative (PPMI).  This ongoing initiative follows PwP and controls over time and has resulted in a huge database of information for research.  In fact the recent announcement of biomarkers for PD was the result of research done with this data. These biomarkers will improve diagnosis and research in the treatment of PD.

It is important to remember that there is a lot of PD research going on and a lot of good things happening in the world of PD. There have been 10+ new medications or treatments approved just in the 11 years since my diagnosis, and several more are in the pipeline.

You are not alone! There are support groups both in-person and online, and there are hotlines at all of the major organizations staffed to answer your questions and concerns. We are all in this together, and together we will defeat Parkinson’s Disease!

SOME RECOMMENDED LINKS:

Parkinson’s Foundation 

WhatYouAndYourFamilyShouldKnow.pdf

Medications.pdf

Fitness_Counts.pdf

Caring_and_Coping.pdf  Excellent document for caregivers.

Michael J Fox Foundation

Parkinson’s360

Michael Fox Clinical Trial Finder

Michael J Fox Insight

Davis Phinney Foundation  

Parkinson’s 101  Understanding PD

Living Well with PD (Every Victory Counts Manual)

PD Exercise Essentials (video)

Some recommended Blogs to follow (besides mine of course!)

Science of Parkinson’s – a great resource about the latest research in PD presented in plain english.

Twitchy Woman – Sharon Krischer’s blog provides excellent posts about living with PD.  She is a strong advocate for meeting the needs of women with PD and has been encouraged by the Parkinson’s Foundation and Michael J Fox Foundation to expand her concepts for women and PD groups.  

Parkinson’s Humor – by Yuma Bev – humorous views of living with PD 

Journey with Parkinson’s by Frank Church – former medical researcher/ teacher with PD 

These are just a few of the many listed under the ‘my blog list’ tab on my blog It Is What It Is!

If you want to keep up with PD news, consider subscribing to one or more of the National Foundation blog sites or the news aggregator Parkinson’s News Today

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