I have written previously about Patient Centered care, health care that establishes a partnership among practitioners and patients, where the patient is respected and has input into his or her care. Seems like a fairly simple concept but, as you will see in this post from my friend and fellow PwP Alan Zimmerman, patient involvement was not wanted during his recent hospital stay and any attempts to get involved were discouraged by doctors at the hospital and the VA.

Alan is a member of the Parkinson’s Foundation Patient Advisory Council, advocates with the Public Policy group at the Michael J Fox Foundation, maintains a couple of Facebook group pages on PD, and somehow finds time to serve as president of the local East Tennessee support group, PK Hope is Alive. His recent four day stay in a local Knoxville hospital prompted this post on the support group website:

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“I spent four lonely days in a brown L.A. haze” from “Come Monday” by Jimmy Buffett

In other words, I was in the hospital for four days and three nights.

There is good news and bad news. The good news (from some perspectives including mine) is that i am still alive. The bad news is that PwP seem to be thrown into the “One size fits all” bag. Oh! Almost forgot. There is even more good news: The nurses were fantastic (with one exception).

As many of you know, I’m fairly knowledgeable about most things Parkinson’s. That piece of trivia probably worked in my disfavor.

Intellectual curiosity? None noticed from Dr. Wong. Did he do any extra reading or look at a few PD studies? Not that I could tell. I even asked for a neurological consult but was ignored. Evidently this doctor already knows everything.

What gives a mere patient the right to come in here and challenge what we do?

Learn anything from the patient – no way. The patient could not possibly know anything because they do not have a MD or DO behind their name. Only those that do are considered worthy. At least that is the attitude that came across from one doc.

Don’t ask me about delivery of medications. Unless of course you are interested in an illustration why PwP dread hospital and time spent in the ER. Had my particular form of the disease been different, I could easily have found my way to the “crazy ward.” Why? Because I would not have received my meds on time and could have suffered a severe reaction.

Why? Because medication delivery was so very hap-hazard. You will get it when you get it. You are on our schedule now. We have you captured.

“You can check out any time you like, but you can never leave!” from “Hotel California” by the Eagles.

And speaking of meds, Dr. Wong gave me three days worth to last me until I could see my primary care physician. I got lucky (kind of) in that I was able to make an appointment to see Dr. Mistry at the VA. Whew! Or so I thought. Of course, by the time I get the meds through the VA mail order system, I should be well.

I even copied research on Blood Pressure and Parkinson’s Disease for Dr. Mistry. I figured it would help her treat me. Since some PwP have BP that fluctuates significantly (as does mine), one cannot treat it as high or low except when carefully and frequently monitored. Dr. Mistry refused to even look at the research I provided. Intellectual curiosity seemed non-existent.

I also discussed the “Outcomes Project” sponsored by the Parkinson’s Foundation. With over 10,000 participants, there is a whole lot of data. I only told her about a portion which includes developing a treatment plan by three physicians discussing the patient. The primary care physician, a general neurologist and a Movement Disorder Specialist should all talk to each other in ordser to provide for the best patient outcome. She was quick say that idea is worthless.

I’m at a loss. I have no idea where to start nor how to convince.

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I’m at a loss too, but it doesn’t seem right that you have to fight with hospital staff or your VA doctor for the right to explain your symptoms and why you need to take your medication on time.

While it seems that being surrounded by medical professionals would mean no worries about getting your medication timely, a recent study found that three out of four people with Parkinson’s do not receive medications on time when staying in the hospital. As a result of this study, the free Aware in Care kit was developed with a primary goal of be able to inform the hospital staff that some drugs don’t play well with your PD medication and you need your medication on time, every time.

Alan is well versed in PD and he was proactive in trying to get his medications timely and and explaining his symptoms. He even had a printout about the effect PD medications have on his blood pressure, yet no one was interested. I don’t know what the answer is but I think we have to be proactive, make sure your medical care team knows that you expect patient centered care in the office and in the hospital. As for the timely medication problem, lets spread the word- On Time/Every Time!

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

Welcome 2018 – Another Year of Exercise

YMCA Pedaling Class Parakinsonscyclingcoach.com

It’s a new year and time to renew my resolution to continue exercising at least 4 -5 times per week. As 2017 came to a close a new research study was published that shows high intensity interval training (HIIT) delays Parkinson’s progression. As Daniel Corcos, one of the lead authors of the study states “If you have Parkinson’s disease and you want to delay the progression of your symptoms, you should exercise three times a week with your heart rate between 80 and 85 percent maximum. It is that simple.” If you query Google for High Intensity Exercise and Parkinson’s you will find an abundance of articles about this study, here is the link to one of them from Science Daily.

While the need to exercise for PD patients has been shown in many studies, this was one of the first to be conducted for 6 months instead of 12 weeks. The participants were divided into three groups, HIIT exercise, moderate exercise and no exercise. All scored about 20 on a PD scale of 0 – 108 before the study. When scored after the 6 months The HIIT group showed no change while the moderate group got worse by 1.5 points and the no exercise group worsened by 3 points or about a 15% change.

Although the primary exercise used during this study was the treadmill, Kathy, our Parkinson’s cycling instructor immediately figured that we can step up our cycling program to include high intensity intervals and start raising our aerobic fitness level. So, even though many of us thought we were doing high intensity training already (well at least I did), she started pushing us to reach the 80 – 85% heart rate after Thanksgiving. Almost every workout has incorporated HIIT and I am already starting to see a change in just 6 weeks. The first few sessions I found I had to lower the gear to finish the workout. But each time I felt I was getting stronger and this week I was able to increase instead of decrease the gear and still maintain the required 80 – 90 RPM. I am happy with that progress and I am noticing a reduction in my symptoms after exercise including not feeling ‘off’ a half hour or so before it’s time to take my medicines on the day of exercise.

But I wondered what is happening to my aerobic fitness? Then I discovered that my Fitbit app is keeping track of my cardio fitness! The app determined my heart rate zones and then uses those zones and my resting heart rate to compute a cardio fitness score. As you can see in this screen shot on the left, Fitbit has determined that, for me, a heart rate greater than 126 is my peak zone and my cardio zone is 104 – 125. The peak range is approximately 80% of my maximum heart rate so anything above that would be considered high intensity exercise.

The app also graphs my heart rate for the entire day so I can tell from that graph how long I was in the peak zone. The screen shot on the left is for 1/2/18 which includes a cycling class.

So I was in the ‘zone’ for 9 minutes during the class which corresponds to intervals where we pushed up to 85 or 90 RPM for short periods.

And here are screen shots showing my cardio fitness as computed by Fitbit on November 16, 2017 and January 2, 2018. So, in theory, I’ve already improved my Cardio Fitness by a point since we started the HIIT. But just as important is that fact that either score is considered excellent by Fitbit where the average score for men over 60 is 27.2 – 31.0.

Between cycling twice a week, playing tennis 2 -3 times a week and the Dance for PD class I am staying fit, slowing the progression of my Parkinson’s and having fun. We will revisit my cardiac score in a month or so to see if the trend continues or maybe I’m maxed out!

So my New Year’s resolution this year is the same as last year, keep exercising and keep fighting PD. By the way, if you are interested in Pedaling for Parkinson’s, check out this video from the Sarasota YMCA website of one of Kathy’s classes and watch us having fun doing intervals!

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

Sarasota Happenings

We have been busy with exercise, visitors and events since returning from Knoxville after Thanksgiving.

Right after we returned, our friends Pat and Steve from Colorado arrived for a visit which included a trip to Walt Disney World where we met up with our mutual friends Ted, who also has Parkinson’s, and his wife Jan. We spent two nice days at Epcot and the Magic Kingdom with light crowds so we actually got to ride the 7 Dwarfs Mine Train with only a 25 minute wait! (That’s all six of us zipping down the hill) And we got a lot of exercise walking around the parks.

We finished the visit up with our first trip to the Dali museum in St. Petersburg. It contains the largest collection of his works outside of Spain, all donated by a couple who started collecting his work in 1940’s. It was interesting to see his painting style change to surrealism as his career progressed.

This week we also attended Cause 4 Fashion, a lunch and fashion show to benefit the Neuro Challenge Foundation for Parkinson’s. All of the models were either Parkinson’s patients or care persons and our friend Carolina was ‘on the runway’ again this year. It was a well attended event and for a great cause. Neuro Challenge sponsors over 30 monthly education and support programs in four Florida counties including our PD in Motion class and all at no charge.

As always, we try to exercise at least 5 days a week. We attend the PD in Motion dance class every week and play tennis at least 3 times a week. I attend Pedaling for Parkinson’s at the YMCA and Mara does her weight training routine twice a week. Kathy, our pedaling instructor, continues to push our class with new routines which keeps it interesting. I am amazed at the improvement in my aerobic base since we returned in September. I continue to see a reduction in symptoms for up to 24 hours after each class. If you have a class near you I highly recommend adding it to your exercise routine.

As you have probably noticed, I continue to play around with the format of the new site along with trying to find all of the broken links and missing photos. This week I also updated the Resources page to reflect the merger of Parkinson’s Disease Foundation (PDF) and the National Parkinson’s Foundation (NPF) in to Parkinson’s Foundation. I added a new resource website about hallucinations and delusions caused by PD. The site is called more to parkinson’s and is sponsored by Acadia Pharmaceuticals.

In case I don’t produce another post this year, I will take this opportunity to wish everyone a Happy Holidays!! We hope 2018 will be a year of Peace, Joy, Good Health and Good will for us 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!

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