The Top Things I Learned in Parkinson’s Summer School

The Top Things I Learned in Parkinson’s Summer School

Laurie K. Mischley, a naturopathic doctor, assembled approximately 60 people with Parkinson’s for a conference at Bastyr University’s Seattle campus in August. The six-day “summer school” included lectures, exercise classes, and nutrition advice designed to improve each patient’s experience with Parkinson’s and possibly slow progression. Those in attendance provided blood, urine, breath, hair, and stool samples for analysis. The data gathered were used to tailor science-based, real-world strategies for each student to implement at home.

Mischley is the principal investigator in the research study “Complementary & Alternative Medicine Care in Parkinson’s Disease,” which analyzes patient experiences. This study tracks medication, dietary, and nutrition habits, as well as supplement use and other selected behaviors of people with Parkinson’s, and will correlate those factors with disease progression. For many years, Mischley has treated only patients with Parkinson’s.

Mind and movement classes were offered at 8 a.m. and 1 p.m. daily. Classes in yoga, qi gong, meditation, the Feldenkrais Method, and high impact, to name a few, were led by personal trainers, certified instructors, or physical therapists. The whole teaching staff was experienced in movement techniques that are tailored for people with Parkinson’s.

Following are my top takeaways from the conference and the teachings of Mischley. Consult your doctor before making any changes to your health regimen.

1. Step outside my comfort zone

Mischley stressed the importance of doing new, different, and challenging activities. They help us build new neural pathways, which may help slow disease progression. During the week, we were offered sessions in drumming and singing — activities that are not in most people’s comfort zones.

2. Taking prescription drugs is not enough

Socialization and support groups, exercise, diet, and dietary supplements are extremely important.

At one of the meals, I spooned rice onto my tray rather than my plate. While trying to fix the mess I’d made, I looked around and saw faces filled with empathy rather than annoyance and impatience. Many of us with Parkinson’s deal with clumsiness and the “dropsies” on a daily basis. Being surrounded by people who understand Parkinson’s symptoms can be quite comforting.

Self-isolation does not help depression (a possible Parkinson’s symptom). I know that I need to socialize more, but sometimes fatigue (my worst Parkinson’s symptom) gets in the way.

I have long believed that exercise is key to staving off disease progression. Mischley’s recommendation is five to seven days per week of movement activity, some of it intense enough to elevate the heart rate (e.g., it should be difficult to talk while walking at a brisk pace). Amplitude training and task-specific exercises should also be included.

Flavonoid consumption might be neuroprotective. Hence, Mischley recommends including plenty of dark berries and several cups of green tea in the daily diet.

A plant-based diet (no dairy) is the way to go.

3. Disease progression may be slowed with some supplements

Mischley recommends the following to potentially slow disease progression:

  • Glutathione: intranasal is better than capsules, but much more expensive;
  • CoQ10: has mitochondrial/cellular protection properties;
  • Turmeric/curcumin: curcumin exhibits antioxidant and anti-inflammatory properties, crosses the blood-brain barrier, and may be neuroprotective;
  • DHA: has anti-inflammatory properties.

4. Absorption of nutrients and medications is important

Just taking medications and vitamins is not enough. The body must properly absorb them. Even though I was taking a lot of supplements (B, D, omega-3 fatty acids), my lab results showed that I was deficient in these substances, which may indicate that my body is not properly absorbing them. I have always felt that the carbidopa/levodopa (C/L) I was taking did not really help my symptoms. Perhaps my body was not absorbing that medication properly, either.

A suggested way to optimize C/L absorption is to take nonbuffered vitamin C, such as Emergen-C, with medication. CDP-choline  and a digestive enzyme supplement were also recommended to possibly improve nutrient and medication absorption.

5. People with Parkinson’s typically show common nutrient deficiencies

Through her research, Mischley has found that there is some commonality in out-of-range lab test results among people with Parkinson’s:

* I was out of range in these areas

Most standard blood test panels do not include testing for any of the above.

6. There is no ‘magic pill’ that addresses all symptoms or progression

Mischley compares Parkinson’s to a boat with a lot of holes in it. There is no one plug that will fix all the leaks, but rather a platter of plugs. Plus, we all need to find our own way. What works for some may not work for others.

It takes a lot of trial and error to figure out a personalized strategy. However, I have faith that there is a “cocktail” of remedies that will work for me. Attending Parkinson’s Disease Summer School has helped me take the first step by giving me the tools and information I need.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.
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At the age of 62, I started writing to inspire conversation about mental illness and suicide after my life partner, Steve Tarpinian, took his own life in 2015. Seven months after Steve passed, I was diagnosed with Parkinson’s Disease. Now, in addition to Steve’s story, I am telling my own.

20 comments

  1. Karen Frank says:

    I really wanted to attend, but at $5000.00 for a week, it was too steep a price for me. Are there other seminars that might be more affordable to cover similar content?

    • Jean Mellano says:

      hi karen,
      yes, the cost was high, however,what dr. mischley offers is unique and well worth the money if you can afford it. i am not aware of any other seminars like hers. 🙁 She does heave some excellent videos on Vimeo, if you do a google search on her name, I am sure you can find them.

  2. Rudy says:

    This has been so helpful. I will call the neurologist and ask for bloodwork that will show if the supplements I am taking or getting into my bloodstream. Thank you so much

  3. Craig says:

    Thanks Jean for posting this!
    It’s not only useful for people who weren’t able to attend!
    It’s also valuable to those of us who were able to go!
    With so much to sort through, it’s good to compare notes and hear what others main takeaway’s were!

  4. diana says:

    I was surprised you didn’t say whether any of this made a difference in how you felt. Maybe it’s too soon to say. I think I would want to know specifically what made a difference, and changing so much at once might impair clarity… Interesting though.

    • Jean Mellano says:

      hi diana, i plan to give it a least a month on the provided recommendations for me. i am also so weary with making changes one a a time with my meds to see what works. i have been doing that for several years now. i plan to throw everything at pd now as i am at my wits end. hopefully i will be writing in another month or two saying i feel much better

    • Jean Mellano says:

      bonnie, thanks for your comment. there is not a ‘standard’ dosage i am aware of. Each person’s lab results were different and their recommended dosage was based on their individual results.

  5. Lou Hevly says:

    There’s an interesting interview with Dr Mischley at https://tmrwedition.com/2017/12/11/q-a-with-expert-on-nutrition-for-the-brain-dr-laurie-mischley/. In it she mentions the work of Dr Dale Bredesen and his work preventing cognnitive decline in Alzheimer’s patients. It may well be that many of his preventive techniques can be effective for PD patients.

    I think you’re wise when you say “I plan to throw everything at PD now”. It’s possible that long-term (2-5 years) use of a combination of vitamins and supplements will have a combinatory or even a synergetic effect that wouldn’t show up in lab tests, which only analyze the effectivity of one isolated element at a time.

    Finally, there is a survey, “Patient-Reported Outcomes in PD”, where you can measure your PD’s progress, at https://redcap.bastyr.edu/redcap/surveys/?s=ts6Eh7.

    • Jean Mellano says:

      Hi Lou
      Thank you for sharing those links. I have read that once a cure is found for ALZ or PD, it wont be long before a cure is found for the other. I can only hope that following all of Dr. M’s recommendations will help. Dr. M. encouraged us to measure our progress periodically with that survey. We were directed to take it before we arrived at the summer school to establish our baseline.

  6. Lou Hevly says:

    This is very good:
    “Mischley compares Parkinson’s to a boat with a lot of holes in it. There is no one plug that will fix all the leaks, but rather a platter of plugs.”

    In “The End of Alzheimer’s”, Bredesen states “… there are many contributors to Alzheimer’s disease —that is why I tell patients to imagine a roof with thirty-six holes, and understand that it may take patching many of them to bring about the optimal effect.”

    I only wish that more money and resources were being directed to researchers investigating along these lines.

    • Jean Mellano says:

      Thank you Lou for your comments. I too wish there could be more resources/money directed to the type of work Dr. Mischley is doing. I believe the answers will lie in a combination of the naturopathic philosophies with traditional Western medicine.

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