We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster. But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal. It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all! So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries. During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday. We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil. We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

A week or so later we were off to San Diego to visit Ryan, Sarah and Julian. We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday. The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College. We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year.

In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee. Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists. If it all works as we would like, the Doctor can order additional cards to have on hand for patients. The goal is to let newly diagnosed PwP know they are not alone and resources are available.

So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up. In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!! Click on the button at the top of the page or the Fox Insight icon to sign up. Thanks!

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

Rallying to the Challenge – 2015

We recently attended our second Grand Challenges in Parkinson’s research conference hosted by the Van Andel Research Institute in Grand Rapids, MI. Again this year The Cure Parkinson’s Trust (UK) and Parkinson’s Movement(UK) sponsored the Rallying to the Challenge meeting which is conducted in conjunction with the research conference and provides an opportunity for researchers, patients and caregivers to exchange information. The theme for this year’s Rally was “Outcomes and Measures, a new look at Measuring Parkinson’s” and, as you will see, we had a very full two day agenda.

Tom Isaacs, co-founder of the Cure Parkinson’s Trust, opened our portion of the meeting saying that together we are making a seismic shift for better research, research that includes the patient and the patient’s needs. As a result of last years Rally a ‘Clinical Trials Charter’ (click here to view the charter) was developed as a cooperative effort by patients and researchers. A UK multi-center clinical trial has adopted the charter for their research which will provide a real-world test and a stepping stone to wider adoption. We were amazed to see how our efforts from just a year ago have paid off in the cooperative development of this charter by patients and researchers. (Read the post from last year here)

Tom then discussed this year’s Challenge – How do we improve outcomes and measures in clinical trials? The emphasis again this year was on improving the patient experience and introducing patient centered change to the research process. In addition we will discuss how data gathered from new technology, (wearable sensors, smartphone apps, etc) can provide new measures and improve some of the current measures.

Jon Palfreman, PwP and author of the recently released “Brain Storms – The Race to Unlock the Mysteries of Parkinson’s Disease” pointed out that the Unified Parkinson’s Disease Rating Scale (UPDRS) is primarily subjective and provides only a snapshot of the symptoms you are having when administered, usually 1 or 2 times a year during your Dr. visit. Ideally, with the advent of wearable sensors and other technology, you should be able to provide a picture of your symptoms for the entire period between Dr. visits and get real time feedback yourself.

Dr. Soania Mathur and Dr. Jon Stamford reviewed the results of this year’s survey about the symptoms of PD which have the most important impact quality of life. Interestingly, out of 492 responses to the survey not one respondent listed their top five symptoms in the same order. In fact, if you look at this slide from the final presentation, I count 28 symptoms that were brought up when answering the question “What symptoms most affect your quality of life?” This slide certainly points out that PD is truly different for each of us.

The top symptoms in both categories were put into smaller groupings and we broke out into focus groups to discuss how to improve measurement of our set of symptoms. Every focus group not only developed ideas for measuring symptoms, but also came up with tips and tricks for dealing with the issue, for example walking backwards to relax dystonia of the foot.

The next morning, we had an almost overwhelming number of presentations about new technological devices that will help measure PD symptoms when on or off medication. Presenter’s included Ken Kubota from Michael J Fox Foundation (Fox Insight Wearable Trial), Anupam Pathak Ph.D. from Google (the Lyft spoon), Bruce Hellman (uMotif Smartphone app now available in the UK and coming soon to the US and Canada) and Caroline Tanner (mPower also a smartphone app developed from the SmartPhone PD clinical test I participated in)

We also had presentations from a Davis Phinney Foundation representative about a social networking program they are developing, one from Peter Schmidt of NPF about their Parkinson’s Outcome Project (another one I am participating in) and from Eli Pollard executive director of World Parkinson’s Coalition about PowerThroughParkinson’s, a program they are bringing out with the Brian Grant Foundation that encourages PwP to commit to exercise and eat right.

Day Two also included a presentation from the renowned Parkinson’s Doctor and researcher Bas Bloem from the Netherlands about Parkinson’sNet, a program he helped develop in the Netherlands 10 years ago and which has been implemented in LA area and soon in Grand Rapids. ParkinsonNet has one goal: to guarantee the best possible care
for people suffering from Parkinson’s Disease.The program has been extremely successful in providing expert care while also reducing costs.

We then reconvened with the researchers and Tom Isaacs and other members of Parkinson’s Movement made a presentation of the results of our meeting and the need for patient involvement in the development of measures that would be the:

Right Measure – developed with the end user as a partner
Right Person – measure what is important to the person
Right Situation – don’t forgot off periods and how PD changes

In addition to meeting old friends and making new ones, we also enjoyed the exhibition of photos by Norwegian Photographer Andres Leines entitled “This is Parkinson’s”. Andres has early onset PD and has been taking pictures of other EOPD patients to point out that Parkinson’s is not just tremors and doesn’t just effect seniors. You can view some of the photos in this excellent YouTube video.

And finally, the Michael J Fox Foundation just announced that the Fox Clinical Trial Program has exceeded 50,000 registered volunteers! In case you’re not one of us, click on the big shiny button at the top of this page and sign up! Thanks.

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

Links and More Links

No not sausage links, website links! I thought I would devote this post to what’s going on in the Parkinson’s world. As you know I follow a number of other Parkinson’s blogs and here are a few items of interest from month or so, click on the link to read the entire post (will open in a new tab).

Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s. Inosine is a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression. The trial will start early next year in 60 sites.

Parkinson’s Psychosis Drug One Step Closer to FDA Approval Acadia Pharmaceuticals announced that it has submitted a New Drug Application to the FDA seeking approval for its drug Nuplazid (the compound pimavanserin) for the treatment of psychosis associated with Parkinson’s disease (PD). Current drugs used to treat PD psychosis have safety concerns and serious side effects for PD patients. A Phase III study showed the drug significantly reduced psychosis compared to placebo without worsening motor function. The study also showed the drug was safe and well tolerated.

How to Find the Right Dr Some excellent suggestions from the Parkinson’s Community on linking up with the right Doctor for PD treatment. My recommendation – if possible, link up with a Movement Disorder Specialist.

10 Breakthrough Therapies for Parkinson’s Disease The NPF Medical Director, Dr. Michael Okun, has published a new book covering new therapies for PD. I purchased a copy the day it was released and it is an excellent book, as was his first book, “Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease”. He has an excellent writing style and there are chapters covering new drugs (released and in the pipeline), effects of exercise, coffee, tea and Marijuana, new DBS advances and stem cell therapies among others. I highly recommend both of his books.

How Do I Know If I’m Doing the Right Thing When I Exercise?
A post from PD Gladiators, an Atlanta based non profit devoted to combating PD with vigorous exercise. There has been a lot of emphasis on the benefits of exercise and this post discusses what exercise is optimal and how often you should exercise.

Delay the Disease, an Ohio based exercise program, is offering the Handwriting Challenge This program involves doing four simple exercises every day for 12 weeks. The exercises should take about 10 minutes to complete and are designed to test a theory they have that large muscle exercises will improve motor dexterity including micrographia (tiny handwriting). Every three weeks you write out the same sentence with the hope that your handwriting improves. Even if it doesn’t the exercises can’t hurt!

What’s It Like Having PD An excellent post by Bruce Ballard who blogs as Parking Suns. Those of us with PD will agree with these ideas to simulate PD for people who don’t have PD. I found numbers 1 and 2 an accurate description of what it feels like without medication, I’m sure you will find a few that match your symptoms too.

Coming up, Mara and I will be attending the second “Rallying to the Challenge” event organized by the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids, MI at the end of September. I wrote about the first meeting here and this years meeting will center on how to introduce new technology and additional personalized patient-centric measures into clinical trials. We are looking forward to catching up with members of our Global support group, meeting new members and enjoying the ArtPrize festival in downtown Grand Rapids.

OK, if you have followed every link in this post, you have a bunch of tab’s open and your browser is getting ready to explode so I’ll stop with a quick reminder, sign up for Fox Trial Finder (click on the button above and open one more tab).

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

Year: 2020

Sample Post #2

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Gravida dictum fusce ut placerat. Convallis aenean et tortor at. Mauris sit amet massa vitae. A condimentum vitae sapien pellentesque habitant morbi tristique senectus et. Malesuada nunc vel risus commodo viverra maecenas accumsan lacus. Magnis dis parturient montes nascetur ridiculus. Volutpat sed cras ornare arcu dui vivamus arcu felis. Neque sodales ut etiam sit amet nisl purus in. Elit ut aliquam purus sit amet luctus venenatis lectus. At volutpat diam ut venenatis tellus in metus vulputate.

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At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.

Tellus in metus vulputate eu scelerisque felis imperdiet proin. Eu ultrices vitae auctor eu augue ut lectus. Enim sed faucibus turpis in eu. Hac habitasse platea dictumst quisque sagittis purus. Justo laoreet sit amet cursus. Lobortis mattis aliquam faucibus purus in massa tempor nec feugiat. Mauris pharetra et ultrices neque ornare aenean euismod elementum nisi. Lectus sit amet est placerat. Vulputate enim nulla aliquet porttitor lacus luctus accumsan. Odio pellentesque diam volutpat commodo sed egestas. Sapien eget mi proin sed libero. Ut placerat orci nulla pellentesque. Mi quis hendrerit dolor magna eget est. Nunc scelerisque viverra mauris in aliquam. Sapien faucibus et molestie ac feugiat sed lectus vestibulum mattis. Odio ut enim blandit volutpat maecenas volutpat blandit. Cras sed felis eget velit aliquet sagittis id consectetur purus. Porta nibh venenatis cras sed felis eget velit. Imperdiet proin fermentum leo vel. Tempus egestas sed sed risus pretium quam vulputate dignissim suspendisse.

Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.

May 21, 2020
Sample Post #1

Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Gravida dictum fusce ut placerat. Convallis aenean et tortor at. Mauris sit amet massa vitae. A condimentum vitae sapien pellentesque habitant morbi tristique senectus et. Malesuada nunc vel risus commodo viverra maecenas accumsan lacus. Magnis dis parturient montes nascetur ridiculus. Volutpat sed cras ornare arcu dui vivamus arcu felis. Neque sodales ut etiam sit amet nisl purus in. Elit ut aliquam purus sit amet luctus venenatis lectus. At volutpat diam ut venenatis tellus in metus vulputate.

Fermentum et sollicitudin ac orci phasellus egestas tellus. Amet dictum sit amet justo donec enim. Iaculis nunc sed augue lacus viverra vitae. Pharetra pharetra massa massa ultricies mi quis hendrerit dolor magna. Vel fringilla est ullamcorper eget nulla facilisi etiam dignissim diam. Nisi porta lorem mollis aliquam ut porttitor. Vel turpis nunc eget lorem dolor. Lacinia quis vel eros donec ac odio tempor orci dapibus. Mi sit amet mauris commodo quis imperdiet. Porta nibh venenatis cras sed felis. Phasellus faucibus scelerisque eleifend donec pretium vulputate sapien nec sagittis. Volutpat ac tincidunt vitae semper quis lectus nulla.

At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.

Tellus in metus vulputate eu scelerisque felis imperdiet proin. Eu ultrices vitae auctor eu augue ut lectus. Enim sed faucibus turpis in eu. Hac habitasse platea dictumst quisque sagittis purus. Justo laoreet sit amet cursus. Lobortis mattis aliquam faucibus purus in massa tempor nec feugiat. Mauris pharetra et ultrices neque ornare aenean euismod elementum nisi. Lectus sit amet est placerat. Vulputate enim nulla aliquet porttitor lacus luctus accumsan. Odio pellentesque diam volutpat commodo sed egestas. Sapien eget mi proin sed libero. Ut placerat orci nulla pellentesque. Mi quis hendrerit dolor magna eget est. Nunc scelerisque viverra mauris in aliquam. Sapien faucibus et molestie ac feugiat sed lectus vestibulum mattis. Odio ut enim blandit volutpat maecenas volutpat blandit. Cras sed felis eget velit aliquet sagittis id consectetur purus. Porta nibh venenatis cras sed felis eget velit. Imperdiet proin fermentum leo vel. Tempus egestas sed sed risus pretium quam vulputate dignissim suspendisse.

Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.

May 21, 2020
Lessons…Learned
I know this is my second post in less than 30 days! I think I have too much free time on my hands while practicing this social distancing routine! Today I will catch up with what’s happening in PD School 2020 and talk a bit about how I have implemented what I’ve learned so far. If you aren’t aware of Dr. Mischley’s PD School 2020 you can read more about it my posts here and here. And check out the coupon offer at the end of this post!

The last lesson I covered was lesson 3 so I will quickly catch you up on lessons 4, 5, 6 & 7 just touching on highlights and things I found interesting. Lessons 4 and 5 cover the topics of food and nutrition. Lesson 4 discusses what to eat and lesson 5 discusses when and how to eat. In lesson 4 Dr Mischley covers foods that are “Good” for PwP and also foods that are “Bad” for PwP. The data to support the designation comes from the ongoing longitudinal research trial she runs at Bastyr University.

The good foods below are listed in order of decreasing impact, that is fresh vegetables had a greater impact than fresh fruit and so on.
- Fresh vegetables
- Fresh fruit
- Nuts and seeds
- Fish (not fried)
- Wine (yessssssssssssssss!)
- Olive oil
- Coconut oil
- Fresh herbs
The bad foods below are listed in order of greatest negative impact.
- Canned fruit
- Diet soda
- Fried foods
- Ice cream (noooooooooooo!)
- Canned vegetables
- Beef
- Pasta
- Soda
She also discusses how eating can impact medication absorption particularly when you eat protein just before or just after taking your meds. Various diets are discussed and her recommendation is go as vegan as you can and follow the Mediterranean diet.

Lesson 6 discussed the laboratory tests she requests for her patients. Several of the tests are not normally requested by your neurologist or PCP and some are not covered by insurance or Medicare. She notes at the end of the lesson that she is working on trying to set something up to provide the test to any PwP at a reduced rate (she hopes around $500 instead of $2000).

I was interested in this lesson because she pointed out that most PwP’s are low in both vitamins D and B12. A B12 deficiency can result in neuropathy, cognitive decline and loss of sense of smell. In addition tremor, trouble walking and balance may also be effected. Vitamin D deficiency can result in constipation, falls and balance issues, depression and cognitive decline.

I have been taking both B12 (120mg) and D (2000 iu) supplements for the last several years. My PCP tested me for both vitamins this year and I was within range as far as the lab was concerned. Dr Mischley provides her recommended reference range for the tests and I am below her recommended range in both. I was particularly surprised at the vitamin D result with all the sunshine I get here playing tennis, etc. Looks like I need to increase my supplement amounts of both vitamins.

She covers several other lab tests she conducts and why and I think you will find this lesson very interesting.

Lesson 7 discusses gut and intestinal health. This lesson includes a presentation by Dr Samantha Evans who practices with Dr Mischely in Seattle. Dr Mischely provides the introduction and overview pointing out that 50% of the dopamine neurons are located in your intestinal tract. She also discusses the need for gastric acid to breakdown food and medications. She points out as we get older the gastric juice becomes less acidic and recommended taking our medication with a glass of water mixed with 500 mg powered vitamin C to increase the acid level.

Dr Evans discusses how much of what happens in the intestinal tract impacts PwP’s. She discusses SIBO (Small Intestine Bacteria Overgrowth) and Leaky Gut and how it impacts PwP, particularly medication absorption issues.

So there are a few highlights from lessons 4,5,6, and 7. The next class is Do I need to take supplements? and will be available on the 28th of the month.

Quick timeout for some fine print! Before I discuss how I have implemented parts of these classes I just want to remind everyone I am not a medical practitioner and you shouldn’t rely on the information below as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on It Is What It Is .

And we are back.

I have enjoyed these classes and have started trying to put some of what I have learned in to practice. In lesson 2, Dr Mischley discusses the success she has had with treating dyskinesia with high doses of DHA fish oil for 30 days and then adding CDP Citicoline twice a day to improve absorption of Levadopa. Since we eat salmon 4-6 days a week, I decided to test taking the CDP Citicoline as she recommended (2 250 mg capsules twice a day).

I began the test on February 2 and tracked the effects daily through April 4. As she mentioned in the lesson, my dyskinesia actually started getting worse because the supplement was improving the uptake of the medication and after 3 weeks I started to slowly reduce the amount of Sinement,Rytary and Mirapex over the next two months. My goal was to reduce my levadopa intake, reduce dyskinesia and not increase off periods.

By April 4 I had reduced the Mirapex from 1.5 mg to .5 mg (67%) and my Sinement from 2.5 tablets 3 times a day to 2 tablets 3 times a day (20% reduction). My dyskinesia is barely noticeable and off episodes are unchanged. I believe I could stop taking the Mirapex completely except the .5 mg helps reduce my restless leg syndrome which I had before my PD diagnoses but went away with the Mirapex which is also prescribed for restless leg.

I have also tried to do a better job of not taking meds too close to mealtime particularly high protein meals. And I have reduced my dairy intake, even ice cream! I’ve ordered some powered vitamin C which should arrive next week and I will test out taking medications with water mixed with vitamin C. Now if I could just figure out how to get Dr Mischely to remove ice cream from the bad food list!!

Just In!! It’s Parkinson’s Awareness Month and Dr Mischley is offering a coupon for $50 off the PC School for this month (All 24 courses for $100). If you haven’t signed up or have friends or relatives that might find this program useful, please send them this link to the course and the coupon code: AWARENESS. http://pd-school.teachable.com/
April 21, 2020

Catching Up

Rallying to the Challenge – 2015

Links and More Links

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Year: 2020

Sample Post #2

Sample Post #1

Lessons…Learned