In one of the greatest comebacks in sports history, Oracle Team USA won eight straight races to win the 34th America’s Cup 9 races to 8 after being down 8-1 to Emirates Team New Zealand. Watching them race over the last three weeks you realize what team work it takes to sail a 72 foot catamaran with a 150 foot ‘wing’ sail at speeds over 40 miles an hour on San Francisco Bay. In fact, at the end of the winning race today, the Team USA helmsman Jimmy Spithill tweeted a comment from his interview after the win “On your own you’re nothing but when you’ve got a team like this around you, they make you great”.

I feel the same way about dealing with Parkinson’s, you need a team to make you great. The team includes your Movement Disorder Specialist, your regular doctor and should probably include a physical therapist, an occupational therapist, a speech therapist and maybe a nutrition specialist. As you can see, it takes a village to deal with the many symptoms and issues with Parkinson’s disease, just like raising a child.

But as important as your medical team is, the support of my wife, my children and their spouses, my grandchildren, my sisters and a multitude of relatives and friends is just as needed. I am lucky to have their support, words of encouragement and positive thoughts. As Jimmy Spithill said, I would be nothing without the support of my ‘TEAM’. Thank you all for all you do to help me weather this journey.

I’ve had about a week on the new dose of medication three times a day and continue to see good improvement in walking and balance.

This weekend our friends Tom and Marilyn visited from Colorado and we had a great time on the lake cruising, swimming, and catching this shot of the harvest moon rise on the water. A grand time was had by all.

One last reminder, don’t forget the Michael J Fox show premieres this Thursday 9/26/2013.

Parkinson’s Is Not Just Tremors

“Time and again people with Parkinson’s have to fight against the old stereotype that the condition is just a tremor.”

“This basic misunderstanding has sentenced people with Parkinson’s to a life of hurtful comments, being refused service in shops and even being shouted at in the street, all because people have mistaken their speech or movement problems – a common symptom of the condition – for drunkenness.”

Steve Ford, chief executive at Parkinson’s UK

I heard these quotes during an interview on BBC Radio the other night and then looked it up on their website. The story is accompanied by a video interview which can be read and seen here. They recount a study conducted in the UK showing that PWP suffer discrimination because of symptoms other than tremors including the slow gait and balance issues that sometimes make me look like I’ve had one too many before 10 am. I’ve noticed people looking at me like I might be drunk as we walk into the grocery store and it appears from this study that even if I wore a shirt that said ‘I have Parkinson’s’ they still might think I was inebriated.

Thanks to the National Parkinson’s Foundation, I carry a card that helps to explain the symptoms and covers various drug interactions in case I need emergency care.

The non-tremor symptoms such as slurred speech, facial mask (unable to show expressions), freezing in place, and tipsy gait among others are the little known part of this disease for the general public. I did not realize how complex this disease can be until I starting researching after my diagnosis but I certainly have a greater understanding now. I hope that readers of this blog do too.

I had a follow up visit with the neurologist last week and he decided to double the medication dosage from .125 to .25 so I have started the increase with my midday dose and then will add the morning and night doses over the next week or two. The one thing we have already noticed is my soft voice gets stronger after the .25 dose and the balance problems decrease so I am hopeful that .25 three times a day will result in reduced motor symptoms too. I also received a prescription for physical therapy which we hope will help with the gait issues among others.

I’ve also started a spreadsheet to track symptoms after reading a blogpost by another PWP on the Michael J Fox blog. I think it is an excellent idea and should be very helpful when meeting with the doctor. And speaking of Michael J Fox don’t forget his show premiers September 26th.

I’m Alright, Just Slow!

I find myself uttering this remark far too often already 🙂 Unfortunately it was the first of my noticeable symptoms and the one that is still present, even with the improvements from the medication. While my normal walk in the county park next door has gone from 42 minutes down to 37 minutes since I started the medication, I still have my slow times during the day. I guess even the walk is still slow, used to be able to complete in 34 minutes a year ago.

There are many research studies that show exercise helps to slow the progression of PD symptoms so I have been exploring some options in addition to my daily walk. I have found that the local Tai Chi group has weekly Health Recovery sessions so we plan to give that a try in the next week or so. The instructor said the Health Recovery class is for students who want to address particular health issues with Tai Chi, and also for those who are not able to take the regular beginning class. The class focuses on a number of exercises rather than on learning the Tai Chi set. She also indicated that many PWP are able to take the beginning class depending on the severity of their symptoms. So we’ll start with the Health Recovery class to see how my balance issues effect the training and go from there. Will give you an update in a future post.

We also discovered that the National Parkinson Foundation sponsors a retreat every October for newly diagnosed PWP (less than 5 years) and we were able to get into this years offering at the Kripalu Retreat in Stockbridge, MA. The retreat is the third week of October and covers many topics including yoga, nutrition, medication, exercise, etc. The retreat is designed for both the PWP and their caregiver so we are excited we are able to attend.

It’s been a busy couple of weeks since my last post, Mara had her second successful cataract surgery, we celebrated grandson Jacob’s 9th birthday and enjoyed a brief trip to Pickwick Landing state park in the southwest corner of Tennessee to meet up with good friends from Colorado who were attending a family reunion. And of course we enjoyed many sunsets from the screen porch and a relaxing boat ride on the lake. I may be slower but Life is good!

PS Don’t forget the Michael J Fox show, premiering September 26th!!

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!

Year: 2020

World PD Day 2020

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!

April 11, 2020
PD School 2020 – Update

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

If you have or have not watched the first class, you now have an opportunity to not only watch it but forward that class to family members, friends, care givers and any other person you think could benefit from a good discussion about what it means to be diagnosed with PD.

As I mentioned in the last post, this lesson should be offered to all newly diagnosed Parkinson’s patients- it answers so many of the questions we have at that point but didn’t know enough to ask during that first meeting with the neurologist. The two links below take you to the overview lesson (was already free) and the orientation lesson which is now free.

http://pd-school.teachable.com/p/overview

http://pd-school.teachable.com/p/1-getting-oriented

I have completed lesson two “Dopamine Repletion” and lesson three “How Do We Know What We Know”. Both were excellent and I highly recommend them both. Here are a few of the highlights:

Lesson two – Dopamine Repletion – is an excellent overview on the drugs available, along with when is the best time to take them and avoid the protein from meals blocking the transfer of dopamine to the brain.

She utilizes the results of the ongoing CAM Study and other published research to support taking your levadopa/carbidopa with water mixed with vitamin C to provide additional stomach acid to speed up the breakdown of the pills.

In addition, she discusses the use of Fish Oil and Citicoline (both supplements) to reduce dyskinesia by improving the uptake of dopamine so you can reduce your overall dose.

At the end there is a brief discussion of Mucuna, a plant form of levadopa followed by a ‘guest lecturer’ who discusses the pluses and minuses of using Mucuna.

Lesson three – How Do We Know What We Know – discusses PD research from all directions. She was worried this would be the lesson no one watched, but it is another must see as she tackles traditional research, the placebo effect and more. Rather than try to recapitulate it all here I am going to just pull a few points from her summary at the end of the lesson:

-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

As she wrapped up this lesson, she said she favors a ‘friendly competition’ among PD practitioners. If she is doing something right, doesn’t your neurologist need to know and if they are doing something right, she wants to know that too.

Sounds like a good idea to me.

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

February 21, 2020
PD School – 2020

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.

February 5, 2020