Questions for the World Parkinson Congress!

Here are the research questions for which I’ll seek answers when I’m attending the World Parkinson Congress next week in Portland.  Do you have your own questions you’d like me to add?  Let me know in the comment section below!

Some of these questions may seem repetitive, but here goes:

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1.  How much control do I really have over the disease’s progression, in addition to taking medicine? I’m talking about the things I can do, such as:

• Exercise frequently (how?)
• Meditate
• Eat certain foods (what?)
• Keep mentally active (how?)
• Stay socially active

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2.  What is the truth about whether someone with PD can slow the progression of the disease via exercise and other “enriched environment” initiatives?  My Web researches reveal conflicting opinions.

On the one hand, the Partners in Parkinson’s website says “There is no evidence that exercise affects the progression of Parkinson’s disease, but regular exercise or physical therapy may help people with Parkinson’s with their strength, mobility, flexibility and balance.”

On the other hand, the Northwest Parkinson’s Foundation website contains an article that states, “The brain has the capacity for neurogenesis — the development of new neuronal cells — [neuropsychologist Paul David] Nussbaum said. Exercise, nutrition, socialization, mental stimulation and meditation are all thought to contribute to neurogenesis. That’s good news for people with Parkinson’s…. This is because having plentiful neuronal connections—a ‘brain reserve’—is thought to stave off the onset and progression of brain diseases like Parkinson’s and Alzheimer’s, Nussbaum said.”  (See page 5 in the link.)

So:  Do I have some control over PD’s progression or not?

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3.  Does stress cause you to need your next round of Sinemet earlier than normal? When I first started taking Sinemet (in conjunction with Ropinerole and Azilect), I was fine with 5 Sinemet pills a day, spaced out over 3 hour intervals.  But this summer I found I needed to take Sinemet every 2 hours or so.  I was working long, stressful hours this summer.  If I were to kick back and work in a less-stressful environment (which actually is not a possibility), would I be able to cut back on the Sinemet?

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4.  Does meditation affect the brain structure if you do it regularly over a long period of time, and does this change especially help someone with PD? I read about this in the New Yorker article about the psychedelic drug ayahuasca, which I recently reviewed (and rather flippantly lambasted).  From the article:

A plant is constantly interacting with its ecosystem: attracting insects it needs for pollination, discouraging hungry herbivores, warning other plants that it competes with for nutrients in the soil. It communicates using “messenger molecules,” which allow for semiosis (signalling) and symbiosis (interspecies coöperation), helping the species to improve its circumstances as the process of evolution unfolds. Some of the most important messenger molecules in the plant kingdom are called amines, and are typically derived from amino acids.

The human brain, too, is a kind of complex ecosystem, coördinated by messenger molecules of its own: neurotransmitters, which govern everything from the simple mechanism of pupils dilating in dim light to the unfathomable complexity of consciousness. The neurotransmitters that mediate emotion, awareness, and the creation of meaning are amines—such as serotonin, dopamine, and norepinephrine—which evolved from the same molecular antecedents as many plant-messenger molecules.  […]

Having studied fMRIs and EEGs of subjects on ayahuasca, Araujo thinks that the brain’s “default-mode network”—the system that burbles with thought, mulling the past and the future, while your mind isn’t focussed on a task—is temporarily relieved of its duties. Meanwhile, the thalamus, which is involved in awareness, is activated. The change in the brain, he notes, is similar to the one that results from years of meditation.

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5.  Does aerobic exercise really “flush out” the brain? What does this mean, exactly?  From the Lancet article I recently reviewed:

The Lancet article defines aerobic exercise as “vigorous and sustained activity that leads to increased cardiopulmonary function resulting in improved oxygen consumption (maximum oxygen uptake) and blood flow to the brain. This amount of intensity typically targets a goal of 60% to 85% maximum heart rate.”  The increased blood flow to the brain is in and of itself helpful for Parkies, as it improves the brain environment essential to learning and good brain health.

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6.  When I see my neurologist and she tests me with finger tapping, foot tapping, following her finger with my eyes, etc., and my neurologist seems pleased as punch and says “the disease is not progressing,” what does that really mean? I wonder if it’s merely because I’m on medications and I exercise a lot.  Can she say this without doing an MRI and seeing whether the sections of my brain affected by PD are changing/not changing?

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7.  What is my overall impression from attending the WPC, with its thousands of researchers, medical personnel, care givers and fellow Parkies?

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8.  If I eventually need to get fitted for Duopa or have DBS surgery, will I still be able to work out at the gym and swim competitive long distance open water races?

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Additional questions and comments from people who responded to this post on Facebook:

Malenna Sumrall GREAT questions. I’m not sure there are answers yet to some of them. You referred to them as research questions and I think that is exactly what they are, especially since you are finding contradictory information. There is such a great need for research in so many areas. Start twisting some expert arms!

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Dawn May He spoke to us in Bristol UK and I was so impressed, I immediately began to reduce my medication and increase my exercise regime. So did others. But I treated the exercise as I would a drug – i.e., expected it to be fast acting with immediate effect, not organic as “cell growth” is. So then I began to feel very weak and unwell and gradually had to get back to my earlier medication regime. So let’s get together and share experiences. There must be a regime which is manageable – not 12 hours’ exercise and no life! – and not fistfuls of drugs. Anyone …?

 

Dawn May And another. I went to the Power through Workout this morning. I do Nordic Walking regularly, Irish set dancing, gym sessions etc. BUT I couldn’t do the workout exercises in time to the music. The time it took me to process what I saw, to convert it into movement which corresponded to what every one else was doing – rubbish! So my question is – “Does it matter?” i.e. should I be challenging myself to do stuff I find difficult to make new pathways in the brain? Or should I be satisfied with the physical stuff I already do? Challenging myself, especially in a class, is a very emotionally draining thing to do. I cried this morning. Was it worth it?

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Alan Bolitho Hi Bruce – as others have said Great Questions. I hope you post your answers, even if you get conflicting answers to the same questions.

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Anish Suri Bruce – Great questions … I added my 2cents on your website and gave details of the poster I’m presenting – will post it separately in this group as well…

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Lisa Harris- Murphey What a great list!!

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