• 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/

  • 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!

  • 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.
     
     
     
    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
     
     

IT IS WHAT IT IS!

Eight years…

..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist.  A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses.   A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit.  He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay. 

Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.

I am encouraged by the progress of PD research.  New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’.  Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure. 

Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting.  Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium.  With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.  

I am thankful for the support of family, friends and readers during the past eight years.  Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD.  Thank you!

Other Posts

IT IS WHAT IT IS!

Eight years…

..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist.  A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses.   A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit.  He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay. 

Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.

I am encouraged by the progress of PD research.  New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’.  Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure. 

Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting.  Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium.  With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.  

I am thankful for the support of family, friends and readers during the past eight years.  Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD.  Thank you!

Other Posts

Tag: Parkinson’s Disease

  • Eight years…

    ..ago, I received my “You have Parkinson’s Disease” diagnoses from my neurologist.  A lot has happened in those eight years most of which is chronicled on this blog, which I started a few weeks after my diagnoses.   A few weeks ago I met with my current neurologist who was pleased with my slow disease progression since last year’s visit.  He had no suggestions for changes to my current medication and feels (as I do) that my exercise regimen is a primary reason for keeping PD at bay. 

    Of course my PD has progressed, I don’t move a quick as I used to, I take more medication than I used to, I even purchased a lift chair this year because it was getting difficult to get up after an evening of watching TV. And I have some occasional dyskinesia and the off times are more frequent than they used to be but, I still try to play tennis at least 5 times a week and participate in the Cycling for PD class twice a week.

    I am encouraged by the progress of PD research.  New drugs have been developed in the past few years and there are many research studies going on looking for the all elusive ‘cure’.  Organizations such as PD Avengers and Ending Parkinson’s Disease are working to publicize the PD pandemic and the need for a cure. 

    Speaking of pandemics, the Covid 19 pandemic has had a major impact on our ability to get together in a support group type of setting.  Zoom is better than nothing but it’s still not the same as person to person contact, whether at the gym during cycling or other exercise class, or at a support group, or at a symposium.  With the sudden increase in cases this month, it looks like this situation is not changing anytime soon.  

    I am thankful for the support of family, friends and readers during the past eight years.  Your encouragement and positive comments are much appreciated and push me to do what I can to fight PD.  Thank you!

  • The Saga Continues!

    Wow what an interesting month.   Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market.  When we arrived at the home, we discovered it was a long way from completion!  To say we were disappointed would be an understatement for sure.   The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done.  This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.

    After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through  on Monday the 26th!) What a long and winding road!

    In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price.  We put in an offer which was accepted and we are set to close March 30th!  The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches.  Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move.  Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks. 

    With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis.  Mara is playing tennis almost every day while I play at least three times a week.   Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval.   We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays. 

    April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month.  There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class.  I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.

    I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the  Unity Walk in Central Park on April 26th.  For more information about the Unity Walk and how you can support us, click here. 

  • 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

     

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