Parkinson’s Disease: Two Perspectives

1.

This is what I think comes to many people’s mind when they hear that someone has Parkinson’s disease.  They envision an elderly person, cloaked in stuffy clothes, confined to a chair, ineffectual medicines on the table beside him/her.  The Grim Reaper, a jaunty, sprightly skeleton, stands in the bright sunlight.  Each figure extends an open hand towards the other.  The scythe is superfluous.  Death is imminent if not immediate.  All other options are obliterated.  Roger, over and out.

I can’t deny that a scary end-of-life scenario doesn’t happen for some people with Parkinson’s.  Recently the New York Times published an editorial promoting physician-assisted suicide, in which it highlighted the case of John Rehm, husband of radio host Diane Rehm.  “Severely crippled by Parkinson’s disease,” the Times notes, “his only option for ending the suffering was to stop eating and drinking.”  His wife writes in a subsequent letter that “after suffering two bouts of pneumonia, brought on by John’s loss of muscular ability to swallow correctly, his doctor determined that John had six months or less to live and prescribed hospice care.”  His agonizing death from self-imposed starvation was, Diane Rehm says, “an example of a courageous man who saw his disability as continuing to lead him to further degradation and loss of dignity. He chose to die on his own terms, without further loss of his basic abilities to function as a full human being.”

This harrowing, rather omnipresent view of Parkinson’s disease was revealed in a different NY Times article, which described a dinner party of 20-somethings who asked the following question as a sort of parlor game:  “Would you rather have A.L.S., Alzheimer’s, or Parkinson’s?”  The writer notes that “Everyone chose A.L.S., agreeing that it would be the fastest and therefore easiest death.”

2.

This is a selfie of my husband and me about a year ago on our honeymoon in South Beach, Miami.  I’m 61 in this photo and had been diagnosed with Parkinson’s two years earlier.  We’re walking on the beach and eating fabulous food at every meal.

When I was diagnosed, I visited many movement disorder specialists (neurologists who specialize in conditions like PD) to get 2^nd, 3^rd and 4^th opinions.  Their mood was consistently upbeat.  “When you’re 90, you may need a wheelchair!” was a common refrain.  I believe they implied that I’d need the wheelchair for some reason other than PD.

I went online and read articles like “Improving Brain Function with Exercise, Connectedness and Creativity” on the Parkinson’s Disease Foundation website.  The author ends her opening paragraph with this rousing sentence:  “Today, I am glad to report that we can give a different answer: you actually can have some control over the symptoms of this disease.”  Later in the article she writes:  “There is now scientific evidence to suggest that certain activities   — exercise, social connectedness and creativity — may not only be therapeutic for Parkinson’s symptoms, but may actually change the brain.”

A different article, published by the Northwest Parkinson’s Foundation, describes five ways of “enriching your environment” to boost neuronal connections, which are thought to “stave off the onset and progression of brain diseases like Parkinson’s and Alzheimer’s.”  I summarized them before but here they are again:

1. physical activity:  “…any activity that gets blood circulating to the brain is neuroprotective.”
2. good nutrition:  for example, “… foods with omega-3 fatty acids—such as tuna, salmon, herring and walnuts—seem to have a neuroprotective effect.  Vitamins E and C, which are powerful antioxidants, also have shown benefit to the brain.”
3. staying social:  “…individuals who isolate or segregate themselves have higher rates of dementia than those who stay well-socialized.”
4. mental stimulation:  play complex board games; learn a new language; design your own website and start blogging…
5. meditation and spirituality:  among other reasons, these two options reduce your stress.

From this perspective, PD doesn’t look so bad.  It’s a disease I can deal with.  These five points of light not only look fun, they are fun.  Let me at ‘em!  Pass the salmon!  Drop me off at the gym!  Let me write more posts for this blog!  Show me the other upbeat blogs, too:  The Perky Parkie; Off & On; Louisa’s A to Z of Parkinson’s.

Downsides do exist, but so far to my mind they’re reasonable.  For example, I can usually type with only my left hand.  I can roll up only my right sleeve, not my left.  I can’t twirl spaghetti on a fork.  I’m tired a lot and there aren’t enough hours in the day to accomplish all I want (work; gym; writing; seeing friends; reading books…).  I wrote only one sonnet recently; I wanted to compose a sonnet sequence.

Maybe one day I’ll be in my 90s, confined to a wheel chair, and the skeletal Mr. D will hold out his bony hand my way.  But frankly speaking, who’s immune to that?

I’m not going to worry about that now.  I’m going to keep seeking out stories and comments like this one, which a user on Facebook posted to a blog discussion on the Fox Foundation page:

My husband was diagnosed with early stage PD almost two years ago – he has been a marathon runner and vegetarian for 35 years – he runs every single day and is currently training for a marathon later this year – we think his physical condition and exercise lifestyle have helped him – no new symptoms since two years ago…and no worsening of the ones he has……

Beam me up for that, Scotty!