July 15, 2015

Experimenting with Parkinson's Treatments: What Might Work for YOU?

In yesterday’s post, I described some recent “experiments” I’ve conducted – on my own, and not always with doctors’ approvals – to better manage my health and my Parkinson’s disease (PD).

I successfully ditched blood pressure medication, convinced that my own pressure irregularities were caused by something other than your standard, garden variety hypertension. I’ve learned that an extended release form of levodopa-carbidopa treats my PD better than the “regular” pills I’d taken for years. I learned I needed only about a third of the levodopa my previous neurologist prescribed. I’ve experimented – extensively -- with dosing and timing. I even figured I might use my own blood pressure readings to help determine when to take the next pill.

Dosage and timing are major challenges for people with PD. I see my neurologist every three months and he suggests what doses to take and when. But I know that I can experience daily and even hourly variances in my need for the meds. I'll talk more about that later..

The New Paradigm
I wrapped up my post yesterday with the acknowledgement that we are moving  -- that we must move – away from the old “one-size-fits-all” model of healthcare… the prototype in place for centuriess… and toward a more personalized medicine. The new, emerging model puts to use information that science could never provide in the past – genetic coding, etc – and recognizes that every person has her own version of a disease, and that every patient reacts differently to medications.

(That last part – that people have individual, unique responses to treatments – hit me over the head several years ago when I realized that the serotonin booster 5-HTP didn’t work the same miracles for other people that it did for me. It was an important lesson to learn.)

Imagine my surprise this morning when I ran across a July 6 blog post by Josh Middledorf with the title “Can anything be done about Parkinson’s?” It starts like this:

There’s nothing that will help everyone. 
But there’s probably something that will help you. 
This is the emerging paradigm of individualized medicine. We are in transition from a past when we looked for “the cure” (antibiotics, vaccines) that would work universally to a future in which blood tests and computer analysis will determine exactly the right treatment for your individual metabolism. While in that in-between space, the key will be personal experimentation. Seek out reports of “miracle cures” in which something worked spectacularly well for just a few patients, while failing to help the others. Find ten such miracles, and try them on yourself, one at a time. Experiment to see what works for you.
 Sound familiar?

A Variety of Treatments
Josh describes how science now better understands PD, and he provides a list of possible treatments for people with PD to consider, including:
  • Selegiline
  • Stem cell therapies
  • Glutathione
  • Telomerase therapy
  • Vitamin D
  • Exercise (the common denominator on every list)
  • Rapamycin
  • Melatonin
  • Curcumin (Josh should see my continuing, extensive research on this active ingredient from the Indian curry spice turmeric)
  • Magnesium threonate
  • NOT statins

Josh ends his list of possible treatments with fasting. He quotes an article from The Guardian :
Researchers at the National Institute on Ageing in Baltimore said they had found evidence which shows that periods of stopping virtually all food intake for one or two days a week could protect the brain against some of the worst effects of Alzheimer’s, Parkinson’s and other ailments.

A Difference, A Similarity
There’s a key difference between Josh’s blog approach and mine: I avoid dispensing advice and making suggestions. I may have hyped 5-HTP six years ago because it helped me so much, especially with PD’s common non-motor symptoms: depression, constipation, and insomnia. But I do my best NOT to suggest any courses of actions for others. The list of possible treatment options above is Josh’s, not mine.

Still, in Josh’s inclination to act as CEO of his own healthcare, to keep careful personal records – and yes, to experiment on his own -- it was hard not to sense a kindred spirit through Josh’s post, which he ended this way:
Experimenting on yourself–the one-person trial is the only one that matters 
If you have Parkinson’s Disease or Parkinsonism or early Parkinson’s symptoms, then each one of the above suggestions offers some small chance of improving your condition.  Start by keeping a daily diary of symptoms, a baseline of at least two weeks.  Then try the above suggestions, one at a time. Continue the diary so you can look back and determine what works and what doesn’t.  If you believe you have found a benefit, go off the treatment for a week, then back on, to see if your diary reflects a response to the treatment, or if it was just a fluke. 
Don’t give up.  It is unlikely that any given treatment will work for you, but it is likely that patience and persistence and controlled experimentation will be rewarded with something that helps.

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Josh's blog is apparently widely followed. The comments left by readers at the end of his post are interesting. Here's the link.

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