In place of our regular newsletter, this week’s content is a back to school edition. More specifically, I spent last week at PD Summer School, a week long education conference for people with Parkinson’s disease, facilitated by Dr. Laurie Mischley at Bastyr University, near Seattle, Washington.
It is difficult for my friends, and even my wife to some extent, to understand that I wanted to travel across the country to attend this type of conference. My wife’s doubts are easiest to understand and explain. She thinks I already know more about PD than anyone who is not a neurologist needs to know, and having sat through more than a few PD presentations with me, she can’t imagine how I could spend a whole week at PD Summer School and not be bored out of my mind.
I’m happy to say that was never the case last week.
I’m expecting a fair amount of questions upon my return, some questioning my sanity, some wondering if it was time well spent, and some asking what new insights I have gained. So I’m using the time on the airplane to collect my thoughts.
On Sunday, a bunch of friends (people I’ve known since before my diagnosis) are coming over to my house for a crab feast. During the week, I guess word got out that I was away on some type of medical pilgrimage, because I got phone calls from two friends that can’t make it Sunday, asking me if everything was ok…as apparently many consider this an unusual vacation choice.
As this next week progresses, I’m sure this experience will also prompt quite a few questions and conversations among newer friends that I have met because of PD, so I need to better organize my thoughts for them as well.
Parkinson’s disease is extremely difficult to understand, unless you live with it… and even then, you only truly understand your version of the disease, which is one seemingly unique permutation that changes over time..so there’s a very good chance that as soon as you think you understand it, it will change.
On the spectrum of PD severity, so far I’ve led a charmed life. I’m more than 5 years in, and most days, the only reminder of my diagnosis is that I take a couple handfuls of pills, and that my normal daily routine is interrupted by a late morning boxing exercise class for people with Parkinson’s. Turns out, that boxing class is fun…considerably more fun than what I used to be doing weekdays between 10:00 and 11:00 am.
And people tell me that I look good. They’re probably just patronizing me, but it beats being called big ugly. (That’s an inside joke for someone I met last week.) Those who have known me longer probably say this with sincerity. I don’t have a double chin any more. My upper body has a more muscular build. My calves are not as exaggerated as that insurance commercial, but apparently they appear to be stronger than average, because really, why the hell would anyone talk to someone else about their calves?
When I go to Parkinson’s related events, depending on how well I’ve timed my medication, people usually assume I’m a personal trainer or maybe a researcher, or perhaps a professional calf model…instead of a person with PD. If my medication timing is off, I appear more like someone recently diagnosed than a 5 year veteran of the disease.
I read a lot of articles and blogs, where people with PD complain about people telling them they look good, saying that it trivializes the suffering of the disease. But, I don’t mind, because I know people don’t understand PD, and that they are trying to be encouraging. They may be hoping and/or praying that I can beat this disease. So am I, although my expectations are tempered by realism. A cure would be great, but I’d be ecstatic to continue with mild and manageable symptoms for as long as I can.
As I said, thus far it’s been a charmed life. If you have to have PD, this unique version of mine isn’t so bad. (Granted, it’s a lot of work.) But time is a fickle friend, and 5 years is very insignificant knowing that my life expectancy suggests that I will live 25-30+ years total with PD.
Parkinson’s Disease is a progressive and degenerative disease. As the disease progresses, symptoms worsen and become less manageable.
There is no cure for Parkinson’s, and there is no medication that can stop, or even slow this progression.
There is medication that can make some of the symptoms less bothersome, especially bradykinesia, which is a fancy word for slow movement. For now, it also mostly stops my tremor. For some, especially those in early stages of the disease, the medication is miraculous. But as the disease gets worse, the medication becomes less effective, requiring higher and more frequent doses. Initially, the medicine’s effect lasts for around 4 hours, but this can drop dramatically over time. Also distressing, after a few years, most people who take the medication develop a side effect called dyskinesia, which is involuntary movement and swaying.
The only therapy that appears to slow Parkinson’s is exercise, particularly intense exercise. Exercise can also help reduce some symptoms. I won’t bore you with a list of these potential Parkinson’s symptoms, because the list basically as long as the disclaimers in every pharmaceutical commercial that you are subjected to if you watch the nightly news.
There is a brain surgery that can help the symptoms of some people with Parkinson’s, particularly those with more severe tremor or dystonia (severe muscle cramping). It is called Deep Brain Stimulation (DBS). Basically, a couple holes are drilled in your head, and electrodes are placed in a particular area of the brain. Wires are then run from these electrodes to a battery pack implanted in your chest. A remote control can adjust the electrical current that is delivered to the electrodes. Amazingly, researchers do not fully understand why this works, but for many it does…quite well, in fact. Of course, it is not without it’s own risks and potential side effects.
Neurologists and Movement Disorder Specialists are the doctors that treat Parkinson’s. Most of what they do, after diagnosis, is adjust prescription medications, attempting to find levels of medication that improve the patient’s quality of life. However, their prescription toolbox is quite limited.
Medication is temporary. The fact remains that the prognosis is progressive disability, with a gradual decline in functionality. Parkinson’s is not necessarily a disease that shortens lifespan significantly (a topic of considerable debate), but quality of life is greatly diminished.
With that introduction to Parkinson’s behind us, included mostly to help those without PD better understand my motivation, let’s talk about the PD Summer School program.
Lifestyle & Nutrition Secrets of the Positive Deviants
Among other research, Dr. Laurie Mischley has spent the last 2 decades trying to identify the traits of the positive deviants of the Parkinson’s world. She is a clinical researcher at Bastyr University near Seattle, Washington, and a Naturopathic doctor, with a PhD in nutrition. Among other activities, she leads a research study that is analyzing patient experiences with Complementary & Alternative Medicine Care in Parkinson’s Disease (CAM Care in PD).
This study tracks medication, dietary and nutrition habits, supplements, and other selected behavior of people with Parkinson’s disease, and correlates these factors with disease progression.
Parkinson’s Disease is generally considered to be a progressive and degenerative disease. This study is analyzing factors that appear to be associated with either slower (better) or faster (worse) progression of the disease. The goal is to identify positive deviance strategies that can be used to slow Parkinson’s disease progression.
The concept of “positive deviance” is based on the observation that in every community there are certain individuals or groups (the positive deviants), whose uncommon but successful behaviors or strategies enable them to find better solutions to a problem than their peers. These individuals or groups have access to exactly the same resources and face the same challenges and obstacles as their peers.
In the context of Parkinson’s, the positive deviants see a slower rate of progression of the disease.
Until there’s a cure, the best way to experience Parkinson’s is as a positive deviant. I have spent quite a bit of time over the past 5 years studying Dr. Mischley’s research from afar, and much of my personal strategy for living well with PD has been derived in large part from following her recommendations and applying her insights.
Mischley believes that a 50% slowdown in the rate of progression is possible with dietary and lifestyle modifications. And she further hypothesizes that for some, improvement is possible, and that progression can be halted.
Mischley may not be a Movement Disorder Specialist or even a Neurologist, but she quite possibly knows more than anyone else about Parkinson’s disease treatment. Her expertise is derived from a combination of research and clinical experience with patients.
Her approach cannot be distilled into a single protocol. Like most naturopaths, her approach is individualized to the needs of the patient. She has an extensive toolbox of potential therapies. Some are general recommendations for all, some are recommended based upon measurable nutrient deficiencies, and some are a mix and match suggestions presented for patient consideration.
PD Summer School brought together about 60 people with PD, probably a little more than half accompanied by spouses or caregivers. There were 5-1/2 days of intense education covering the latest information on PD, plus exercise sessions, musical sessions, special activities, and personalized treatment recommendations from her team. The experience exceeded my expectations.
Mischley presents her strategies as complimentary. She actually embraces traditional medicine’s necessary role in Parkinson’s disease treatment. To balance her enthusiasm for naturopathic strategies, Dr. John Duda provided a counterpoint from the world of traditional neurology.
Complimentary and alternative medicine can be controversial topics. We live in the age of YouTube celebrity doctors selling unproven supplements. Mischley doesn’t make any money from supplements, and unfortunately her video appearances are somewhat rare.
Traditional medicine cannot cure PD, and cannot stop PD from progressing (getting worse). Traditional medicine can treat the symptoms of PD, but for most, this solution is only temporary before the side effects of medication (dyskinesia/involuntary movement) become almost as troublesome (and socially isolating) as the symptoms of the disease.
There is a desperate need for alternative and complimentary therapies.
The interesting thing is that Mischley’s research has led to several key general recommendations for improving life with PD that are not necessarily controversial or medicinal. In no particular order, these appear to be the key recommendations:
- Friends – Establish/maintain social connections and friendships. Loneliness is the single most significant factor that leads to faster progression.
- Exercise – People who exercise regularly progress more slowly. Her study shows that 3 days per week for at least 30 minutes is required to have any impact. (1 or 2 days only doesn’t help.) Each additional day per week, up to 7, shows additional benefit.
- Empowerment and Education – You are in control of your life. The disease does not control you. You do not lose power when you let others help you. You are still you. You may have a team of advisors and care partners, but you are the decider, and a strong education is essential to being able to make the best decisions.
- Nutrition – Mischley advocates a plant based diet with no dairy. Dairy (especially milk and ice cream) correlates with higher progression. For most, it is not necessary to become a strict vegetarian, with the Mediterranean diet being suggested to most. “You don’t have to be perfect and stress over your diet, aim for a B+ in adhering to your diet” was a common refrain.
- Reduce Stress – Stress clearly aggravates symptoms. Do whatever is necessary to reduce stress. Meditation and mindfulness can be helpful.
- Hydration – I can’t tell you how many times we were reminded to drink water. We were all given refillable glass water bottles. Dehydration can contribute to PD symptoms, especially tremor, constipation, muscle cramping and dystonia. For some reason I still didn’t grasp the importance of this issue until it showed up at the top of my personal list of recommendations, and it was pointed out that I had other medical signs that pointed to frequent dehydration.
- Sleep – Address any sleep issues/problems. This is a complex issue that is not easy to address, but inadequate sleep leads to faster progression.
- Purpose/Passion – A strong sense of purpose and/or causes for which you feel passion increase quality of life and sense of well being. Embrace and enjoy life. Have fun!
To enable personalized recommendations, as part of the cost of the program, participants had extensive blood tests, hair tests, breath tests, urine tests and stool tests. These tests help identify nutrient deficiencies that may contribute to worsening health, and help identify potential toxicities or other health concerns such as small intestinal bacteria overgrowth (SIBO) which can cause diarrhea and malabsorption of nutrients and/or medications.
I’m going to limit this summary to the more common nutrients. But first, it should be mentioned that she is a strong believer in glutathione, particularly intranasal glutathione, which she believes is the best way to raise glutathione (a powerful antioxidant) levels in the brain, and slow PD progression. Interestingly, she led a clinical study to prove this, and it failed because of an unusually strong (and frankly quite amazing) placebo effect. Yet, she still believes. This is an interesting story in its own right, both about glutathione, and the placebo effect. But we’ll save this for future articles, as I’m planning to both try intranasal glutathione and double down on placebos. (Mischley does not advocate it, but I will point out that NAC supplements are an approach advocated by others for raising glutathione.)
Supplements that are universally recommended are CoQ10 and fish oil. Mischley argues that despite inconclusive study results on CoQ10, there is evidence that 30% of people with PD are deficient, but that testing is expensive and supplementation is a cheap insurance policy.
Fish oil (or algae oil for vegans) is also universally recommended to raise Omega-3 levels. Mischley argues that it is effective in reducing levodopa induced dyskinesia. I had not heard this before, and find this intriguing. The evidence for this claim is incomplete, as it seems to be based on a study that has thus far only published an abstract. https://www.mdsabstracts.org/abstract/preventing-levodopa-induced-dyskinesia-with-docosohexanoid-acid-in-parkinson-disease/
While the evidence is inconclusive for a positive effect, there is no significant evidence for potential negative effects. Her CAM study correlates both CoQ10 and fish oil with a slower progression.
Similarly, the CAM study also correlates the prescription PD drug rasagiline with slower progression. Mischley’s studies are not predisposed to favor supplements over prescription drugs.
There was also considerable discussion of CDP Choline during the week. Mischley doesn’t see a need for CDP Choline until a patient is taking more than the initial base dose of carbidopa/levodopa. She points to earlier studies that showed that patients taking CDP Choline are able to get symptom relief with half the amount of carbidopa/levodopa, and suggests this may be a strategy to help keep levodopa requirements lower.
Another general recommendation was to mix a glass of water with Vitamin C powder to drink when taking carbidopa/levodopa. There are 2 reasons for this recommendation. Almost everyone in attendance had low Vitamin C in their lab tests; and stomach acid is required for absorption of carbidopa/levodopa. Especially for the first dose of the day, the acidic Vitamin C drink can help prime the digestive system for improved absorption of levodopa from prescription medication.
Further supplement recommendations were less general. They are recommended only if substantiated by lab test results.
Interestingly, my lab tests were pretty good…probably because I have been blindly supplementing numerous vitamins, working from an assumption that I was deficient, like most people with PD. One of my primary motivations for attendance was to get the right lab tests ordered, so that I could adjust my supplements.
Research is very clear that low levels of Vitamin B-12 and Vitamin D are associated with faster PD progression, as we’ve pointed out in recent articles. In the case of B-12, recent research has even emphasized that lower levels of B-12 within the normal reference range are still too low. I find it very surprising that neurologists are not ordering annual blood tests for PD patients. Perhaps they are not adequately trained in issues related to nutrition, but I would argue that this needs to change.
High homocysteine is also associated with faster PD progression, and can usually be lowered with a quality B complex vitamin, preferably with methylized forms of the nutrients, most importantly metafolin (L-5-MTHF). Avoiding red meat and dairy can also help reduce homocysteine.
Also interesting was that the lab tests included several inflammation factors. Many suspect that PD may be a result of chronic inflammation. If blood tests indicate inflammation, effort should be expended to lower inflammation. The course of action depends on the specific causes/triggers of inflammation that are identified. Lowering homocysteine and moving toward a more plant based diet are good starting points.
There is no question that many of these recommendations lack high quality evidence of efficacy. But the reality is that in the world of traditional medicine, Parkinson’s is a hopeless degenerative condition. The diagnosis is to accept that your fate will be a steady decline toward immobility. If you want to be a positive deviant, you need to think differently.
When I was diagnosed a little more than 5 years ago, I was told to expect considerably more difficulties 5 years into my future.
But I am a positive deviant, and with Laurie’s guidance, I hope to continue this trajectory.
There are a number of additional topics that are also worth sharing and explaining, but for a summary, this is already a bit lengthy and overwhelming.
But, one final thought…
What were my highlights of the week?
There were many…obviously the information and insight was invaluable, and I’ve attempted to recount many of those insights above. Meeting new friends and having the types of discussion inspired by this type of event was also amazing.
But the moment that stands out above all others is one that is uncharacteristic for me, and completely surprising to have such a memorable impact…saying goodbye and hugging Laurie Mischley. I’m not a hugger…I am analytical rather than emotional. But I believe that Laurie is correct that the importance of human connection is the single most important and unexpected factor that influences Parkinson’s disease progression. Sometimes you need to step outside your comfort zone.
Runner up personal highlight of the week…having a couple beers with John Duda while laughing and sharing stories that had nothing to do with Parkinson’s…at a point in the week where I think that I can safely say that both of us had reached our upper limit of PD related thought.