I realize that I should have included these photos with the last post about our activities for the last two months. Hover over the picture for captions.
So there you have it, in two posts we are up to last weeks World Parkinson’s Congress meeting in Portland, OR. Those adventures will be up next!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
It has been 2 months since my last post (good thing I didn’t promise to post more this year!)and it wouldn’t surprise me to find out no one is following this blog anymore. it has been a busy two months and as you will see below, I am probably 3 or 4 posts behind. So today’s post is a short one to let you know I’m still kicking and will catch up soon.
Wondering what’s been going on since July 24th? Here is the short version in chronological order:
Whew! No wonder I’m tired!!! So as you can see, a lot has been going on and I owe you a few posts with some details which I will start working on forthwith. It may take a few weeks to get it all published but I’m going to try and get it done in shortly after we return to Sarasota next week.
More to come.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
Three years ago today I received the official diagnoses – “You have Parkinson’s Disease.”. And so began my journey as a PwP which included starting this blog a couple of weeks later.
A lot has happened in the last three years including the visit to Kripalu, going to the University of Florida Movement Disorder Clinic for a second opinion, attending Partner’s in PD meetings in Atlanta and Ft Lauderdale, going to the Grand Challenge in Parkinson’s conferences in Grand Rapids in 2014 and 2015, and switching to the Vanderbilt Movement Disorder Clinic for my PD care. And then there is the ongoing Sarasota experiment this year!
If you look back through the 3 years of posts, you will notice that I was much more of a blogger early on with 12 posts in 2013, 25 posts in 2014, slowing to 19 in 2015 and all but stopping with 6 in the first seven months of this year. I’d like to say things will improve but as I have added responsibility for a several PD related websites I don’t think it will improve much. In addition to this blog, I also maintain the PK Hope is Alive support group website, our local Kingston support group site and we have developed the Tennessee Parkinson’s Disease Resource site in an attempt to gather as many of the resources as we can in one place. We hope that this site benefits the entire PD community in Tennessee.
Enough excuses, it has been a positive three years so let’s talk about the pluses!
One plus of traveling to the various conferences and other meetings is I have met so many inspiring PwP’s who have lived with PD longer than I but are staying active and not letting PD define them. Seeing them and keeping up on ongoing research in PD gives us hope that a way to slow the progression or even a cure is possible in the next 5 – 10 years.
The change in medication to Levadopa/Carbidopa has produced a marked reduction in my symptoms which allowed me to up my exercise routine which has also reduced the symptoms and improved my overall health.
Our Sarasota experiment is progressing well, I have been doing Pedaling for Parkinson’s while there and using the on-site fitness center to keep up the exercise routine plus the robust PD community there includes PD in Motion dance classes, boxing classes and yoga classes and we are hoping for another “Let Your Yoga Dance” with Megha this winter.
As for the future:
We will return to Sarasota around the first of September for a bit before we go to Portland for the World Parkinson’s Congress. We are really looking forward to this meeting which brings together PwP’s, care partners, and researchers from all over the world to discuss the status and the future of PD. We hope to renew old friendships and make new ones during the four day conference.
We will continue to participate in clinical trials and serve as Fox Trial Finder Ambassadors and I will continue to blog, hopefully more regularly than I have been.
And finally I want to say thank you to the best care partner ever, my wife Mara and to family and friends who have provided tremendous support on my journey with PD.
Thank You All!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
First and foremost, I hope this post finds you and your families well and hunkered down as we wait out the COVID-19 pandemic. It is an unprecedented time in our lives and I have no idea how it will all end up but I have the cleanest hands in the neighborhood!
Today, April 11th, is World Parkinson’s Day, a part of Parkinson’s Awareness month. In past years, we have celebrated with Parkinson’s Disease walks and last year we moved our Pedaling for PD class out into the lobby of the YMCA to bring attention to PD and the need for exercise. But this year we can only act alone to raise awareness about PD as we stay in to prevent COVID-19.
This month I read a new book about Parkinson’s Disease – Ending Parkinson’s Disease, A Prescription for Action. The books co-authors show that the increasing numbers of PwP has made PD the fastest growing brain disorder in the world. The number of PwP’s has doubled from 3 million to over 6 million in 25 years and they predict it will double again to over 12 million by 2040. As a result they feel PD is a world wide pandemic.
The book is co-authored by four leading doctors and advocates for PD:
Ray Dorsey MD who directs the Center for Health + Technology at the University of Rochester. He has used telemedicine to improve care for individuals with Parkinson’s disease and I have participated in several clinical trials where he has pioneered the use of technolgy particularly cell phones and live video to improve diagnoses and treatment of PD.
Todd Sherer PHD is the Chief Executive Officer of The Michael J. Fox Foundation for Parkinson’s Research. Trained as a neuroscientist, he is responsible for the Foundation’s overall scientific and fundraising direction to speed treatment breakthroughs and a cure for Parkinson’s disease.
Michael S Okun MD is Chair of Neurology at the University of Florida. He established the Movement Disorder Clinic at the University of Florida bringing together Neurologists, Speech Therapists, Occupational Therapists and Physical Therapists for a complete evaluation of the patient. You can read my blog post about our experience when we went to the University of Florida for a second opinion here.
Bastiaan R Bloem, MD, PHD is professor of neurology and the director of the Centre of Expertise for Parkinson & Movement Disorders at Radboud University Medical Centre in Nijmegen, the Netherlands. In 2004, with Dr. Marten Munneke, he created ParkinsonNet, the largest integrated-care program for Parkinson’s patients.
The authors propose a PACT to Prevent the disease, Advocate for protective policies, Care for patients, and Treat the condition with innovative therapies.
Prevent – They point out that stopping the use of chemical pesticides and solvents and recognizing the impact of head traumas would help to prevent PD and lead to a large reduction in newly diagnosed PwP world wide.
Advocate – They point out the need to educate the public about the worldwide Parkinson’s pandemic. The book discusses the campaigns to end or treat Polio, HIV, and Breast Cancer as examples.
Care – They discuss providing care for PwP’s including in home care by healthcare workers trained in caring for PD patients. They point out that care must be covered by health insurance including Medicare. In addition they discuss the need for each of us to take actions such as exercising to improve our own care. By the way, they have an excellent discussion about Pedaling for PD during the chapter about exercising to prevent and/or slow the progression of PD.
Treat – The final section deals with the need to take charge of the research process and make sure new treatments are fully funded. This would include new medications, new surgeries and improved methods of care for Parkinson’s Disease.
The book ends with a prescription for action listing 25 steps each of us can and should take to reduce the worldwide toll of this disease. The list includes banning paraquat and other harmful pesticides, eating like the Greeks, exercising, advocating for resources and policy changes, and providing reasonable pricing for PD medications.
The book is well written and includes many case studies and research references to support their plan for ending or at least slowing down the increasing number of Parkinson’s Disease diagnoses. It also lays out how to care for those of us that have already been diagnosed including supporting clinical trials that slow or reverse the progression of PD.
So, while you are home fighting off the COVID-19 pandemic, you might want to grab a copy of Ending Parkinson’s and read about the other pandemic we are fighting as PwP’s. You can find more information about the book at www.endingPD.org.
I am still working my way through the PD School 2020 lessons and will provide an update in my next post. In the meantime, stay safe and stay healthy!
First and foremost, I hope this post finds you and your families well and hunkered down as we wait out the COVID-19 pandemic. It is an unprecedented time in our lives and I have no idea how it will all end up but I have the cleanest hands in the neighborhood!
Today, April 11th, is World Parkinson’s Day, a part of Parkinson’s Awareness month. In past years, we have celebrated with Parkinson’s Disease walks and last year we moved our Pedaling for PD class out into the lobby of the YMCA to bring attention to PD and the need for exercise. But this year we can only act alone to raise awareness about PD as we stay in to prevent COVID-19.
This month I read a new book about Parkinson’s Disease – Ending Parkinson’s Disease, A Prescription for Action. The books co-authors show that the increasing numbers of PwP has made PD the fastest growing brain disorder in the world. The number of PwP’s has doubled from 3 million to over 6 million in 25 years and they predict it will double again to over 12 million by 2040. As a result they feel PD is a world wide pandemic.
The book is co-authored by four leading doctors and advocates for PD:
Ray Dorsey MD who directs the Center for Health + Technology at the University of Rochester. He has used telemedicine to improve care for individuals with Parkinson’s disease and I have participated in several clinical trials where he has pioneered the use of technolgy particularly cell phones and live video to improve diagnoses and treatment of PD.
Todd Sherer PHD is the Chief Executive Officer of The Michael J. Fox Foundation for Parkinson’s Research. Trained as a neuroscientist, he is responsible for the Foundation’s overall scientific and fundraising direction to speed treatment breakthroughs and a cure for Parkinson’s disease.
Michael S Okun MD is Chair of Neurology at the University of Florida. He established the Movement Disorder Clinic at the University of Florida bringing together Neurologists, Speech Therapists, Occupational Therapists and Physical Therapists for a complete evaluation of the patient. You can read my blog post about our experience when we went to the University of Florida for a second opinion here.
Bastiaan R Bloem, MD, PHD is professor of neurology and the director of the Centre of Expertise for Parkinson & Movement Disorders at Radboud University Medical Centre in Nijmegen, the Netherlands. In 2004, with Dr. Marten Munneke, he created ParkinsonNet, the largest integrated-care program for Parkinson’s patients.
The authors propose a PACT to Prevent the disease, Advocate for protective policies, Care for patients, and Treat the condition with innovative therapies.
Prevent – They point out that stopping the use of chemical pesticides and solvents and recognizing the impact of head traumas would help to prevent PD and lead to a large reduction in newly diagnosed PwP world wide.
Advocate – They point out the need to educate the public about the worldwide Parkinson’s pandemic. The book discusses the campaigns to end or treat Polio, HIV, and Breast Cancer as examples.
Care – They discuss providing care for PwP’s including in home care by healthcare workers trained in caring for PD patients. They point out that care must be covered by health insurance including Medicare. In addition they discuss the need for each of us to take actions such as exercising to improve our own care. By the way, they have an excellent discussion about Pedaling for PD during the chapter about exercising to prevent and/or slow the progression of PD.
Treat – The final section deals with the need to take charge of the research process and make sure new treatments are fully funded. This would include new medications, new surgeries and improved methods of care for Parkinson’s Disease.
The book ends with a prescription for action listing 25 steps each of us can and should take to reduce the worldwide toll of this disease. The list includes banning paraquat and other harmful pesticides, eating like the Greeks, exercising, advocating for resources and policy changes, and providing reasonable pricing for PD medications.
The book is well written and includes many case studies and research references to support their plan for ending or at least slowing down the increasing number of Parkinson’s Disease diagnoses. It also lays out how to care for those of us that have already been diagnosed including supporting clinical trials that slow or reverse the progression of PD.
So, while you are home fighting off the COVID-19 pandemic, you might want to grab a copy of Ending Parkinson’s and read about the other pandemic we are fighting as PwP’s. You can find more information about the book at www.endingPD.org.
I am still working my way through the PD School 2020 lessons and will provide an update in my next post. In the meantime, stay safe and stay healthy!
First and foremost, I hope this post finds you and your families well and hunkered down as we wait out the COVID-19 pandemic. It is an unprecedented time in our lives and I have no idea how it will all end up but I have the cleanest hands in the neighborhood!
Today, April 11th, is World Parkinson’s Day, a part of Parkinson’s Awareness month. In past years, we have celebrated with Parkinson’s Disease walks and last year we moved our Pedaling for PD class out into the lobby of the YMCA to bring attention to PD and the need for exercise. But this year we can only act alone to raise awareness about PD as we stay in to prevent COVID-19.
This month I read a new book about Parkinson’s Disease – Ending Parkinson’s Disease, A Prescription for Action. The books co-authors show that the increasing numbers of PwP has made PD the fastest growing brain disorder in the world. The number of PwP’s has doubled from 3 million to over 6 million in 25 years and they predict it will double again to over 12 million by 2040. As a result they feel PD is a world wide pandemic.
The book is co-authored by four leading doctors and advocates for PD:
Ray Dorsey MD who directs the Center for Health + Technology at the University of Rochester. He has used telemedicine to improve care for individuals with Parkinson’s disease and I have participated in several clinical trials where he has pioneered the use of technolgy particularly cell phones and live video to improve diagnoses and treatment of PD.
Todd Sherer PHD is the Chief Executive Officer of The Michael J. Fox Foundation for Parkinson’s Research. Trained as a neuroscientist, he is responsible for the Foundation’s overall scientific and fundraising direction to speed treatment breakthroughs and a cure for Parkinson’s disease.
Michael S Okun MD is Chair of Neurology at the University of Florida. He established the Movement Disorder Clinic at the University of Florida bringing together Neurologists, Speech Therapists, Occupational Therapists and Physical Therapists for a complete evaluation of the patient. You can read my blog post about our experience when we went to the University of Florida for a second opinion here.
Bastiaan R Bloem, MD, PHD is professor of neurology and the director of the Centre of Expertise for Parkinson & Movement Disorders at Radboud University Medical Centre in Nijmegen, the Netherlands. In 2004, with Dr. Marten Munneke, he created ParkinsonNet, the largest integrated-care program for Parkinson’s patients.
The authors propose a PACT to Prevent the disease, Advocate for protective policies, Care for patients, and Treat the condition with innovative therapies.
Prevent – They point out that stopping the use of chemical pesticides and solvents and recognizing the impact of head traumas would help to prevent PD and lead to a large reduction in newly diagnosed PwP world wide.
Advocate – They point out the need to educate the public about the worldwide Parkinson’s pandemic. The book discusses the campaigns to end or treat Polio, HIV, and Breast Cancer as examples.
Care – They discuss providing care for PwP’s including in home care by healthcare workers trained in caring for PD patients. They point out that care must be covered by health insurance including Medicare. In addition they discuss the need for each of us to take actions such as exercising to improve our own care. By the way, they have an excellent discussion about Pedaling for PD during the chapter about exercising to prevent and/or slow the progression of PD.
Treat – The final section deals with the need to take charge of the research process and make sure new treatments are fully funded. This would include new medications, new surgeries and improved methods of care for Parkinson’s Disease.
The book ends with a prescription for action listing 25 steps each of us can and should take to reduce the worldwide toll of this disease. The list includes banning paraquat and other harmful pesticides, eating like the Greeks, exercising, advocating for resources and policy changes, and providing reasonable pricing for PD medications.
The book is well written and includes many case studies and research references to support their plan for ending or at least slowing down the increasing number of Parkinson’s Disease diagnoses. It also lays out how to care for those of us that have already been diagnosed including supporting clinical trials that slow or reverse the progression of PD.
So, while you are home fighting off the COVID-19 pandemic, you might want to grab a copy of Ending Parkinson’s and read about the other pandemic we are fighting as PwP’s. You can find more information about the book at www.endingPD.org.
I am still working my way through the PD School 2020 lessons and will provide an update in my next post. In the meantime, stay safe and stay healthy!
This will be a short blog post regarding the PD School being conducted by Dr Laurie Mischley which I wrote about in the last post. A few days ago I received the following message from Dr Mischely:
Hi Tom,Yours was one of many requests I’ve received the past few days to make class #1 free.Done. It is now free.Thanks for helping spread the word!Laurie
-Physicians, patients, and researchers all describe/ define PD differently.-Everyone says they want medicines that slow PD progression, but they don’t have a scale to measure progression.-By time a patient is diagnosed, ability to significantly impact course may be compromised.-We don’t know who is going to get PD (screening tests), we don’t know who is at greatest risk of progression, we don’t have a tool to measure progression, and we can’t agree on a definition.-A shocking amount of researcher time goes to keeping one’s job. If you’re not bringing in grant money, you don’t get paid, so instead of just doing science, we spend our time courting the system. Novel ideas and innovation must swim against a significant current. Everyone wants so
Some of you may be familiar with Dr. Laurie K Mischley from Bastyr University in Seattle. She has a medical degree in Naturopathic Medicine and specializes in the nutritional requirements for neuro degenerative disorders. She has spent over 10 years working with PD patients and has a clinical trial going on regarding Complementary and Alternative Medicine (CAM) in PD where participants (I have been one since 8/2014) complete a series of surveys every 6 months to report the status and progression of their PD and we also compete a 24 hour food diary. She has presented programs at the World Parkinson’s Congress and other research meetings and she is considered an expert in the nutritional needs of PD patients.
In addition to seeing patients and conducting research, Laurie also hosts a week long Parkinson’s Summer School at Baystr and she is now offering PD School 2020, an on line course. She describes the course as follows:
“Parkinson’s School was created to be a resource for patients and their family members. Clinic visits are too few and far between and patients have questions that are going unanswered. Over the past 10 years I’ve treated over 3000 patients with Parkinson’s and these courses represent the themes I find myself repeating.
Throughout 2020, a new course will be released on the 14th and 28th of every month. Comments and course discussion will be open for the two weeks after each course to allow time for questions. After comments close, you will continue to have unlimited access to the videos and may watch them as often as you’d like.
As far as I know, online education programs to teach patients to better navigate their disease do not exist. I’m hoping this program will stimulate conversation, collaboration, and a sense of empowerment throughout the community.“
You can register for the course here. The cost of the course is $10 per lesson or $150 for all 24 lessons. Use coupon code NWPF-HOPE for a 20% discount bringing the price down to $120 for all 24 lessons. Below are the topics that will be covered during the year so you can pick and choose if you don’t want to sign up for the entire course.
You can watch the welcome for no charge where she discusses her background and credentials and the outline of the course so you have a better idea of what will be offered before you commit to taking the courses. I have signed up for the full course and I have included my thoughts about the first course below.
Lesson One – Orientation
I think this is the video we wish we could have viewed when we were first diagnosed. It covers what PD is and how it is more than the motor symptoms that affect us and what we can do to delay or reverse it. If you are on the fence about taking the course I highly recommend you purchase the first lesson for $10 just for the knowledge you will gain about Parkinson’s, how it progresses and what she has been doing to reverse or slow progression.
She and her research team have created a PD scoring system that is easy to complete and correlates well with the UPDRS and other tests we often take at the Doctor’s office for both diagnosis and current status. Her goal is to reduce your score by the end of the year. The PRO PD test is available to anyone at propd.org. There is no cost and it takes about 5 minutes to complete and get a score. I took it and ended up with a score of 744. I have asked for my previous scores from my participation in the CAM trial and will be interested to see if there is a change and which way, since my exercise level now is about double what it was in 2014/15.
All of her ideas are supported by slides that contain relevant research reports along with supporting data from the CAM study. This class is interesting and provides a wealth of information for PwP’s. I will keep you posted as I progress through the remaining classes.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
PS: I just received an email from National Parkinson’s Foundation, Dr. Mischley is the featured expert on their next Expert Briefing webinar on March 17, 2020 from 1pm – 2pm ET. More information is available here If you are reading this post after 3/17/2020, all of the webinars are recorded and made available on their website.