July 14, 2017

Update on Aging and Parkinson's and Me

Now that my energy is finally returning after this year's setbacks, I want to provide an update on the state of my aging and my Parkinson's disease (PD).

Aging
I had my 88th birthday on May 26. According to the Social Security Administration's Life Expectancy Calculator, a man who reaches age 88 now can expect, on average, to live to be 93.

As I said to my urologist in 1992 when he told me I had prostate cancer, it's the quality of my life -- not its length -- that matters. Since then, my primary doctors have heard the same thing from me.

My Parkinson's Diagnosis
Like about one third of people with Parkinson's, I don't have the tremor associated with the disease... a fact that often delays diagnosis. My internist at the time missed the boat completely. In 2005, I told him I had lost my sense of smell, an early warning of possible PD. In 2006, I reported that my right arm wasn't swinging normally. In 2007, I described having balance problems, and he sent me to a physical therapist who -- I later realized -- suspected PD and asked me repeatedly, "Have you told Dr. S about your right arm not swinging normally?" That was ten years ago.

That internist never diagnosed my Parkinson's. But my kids were becoming increasingly concerned about my right arm, and the slowing down of my body movements generally. At their suggestion, I saw a neurologist in September, 2009. He quickly diagnosed PD.

The Progression of My Parkinson's
PD is sometimes referred to as a "boutique" disease, unique to each individual. While there are broad commonalities of symptoms from one patient to the next, the progress of the disease can vary significantly.

Issues with movement are idiosyncratic. Non-motor symptoms are also very individualized. Some people (like me) find that symptoms like fatigue interfere more with daily life than problems with movement.

July 12, 2017

I'm Back to Blogging, but with a Renewed Determination to Follow My "Less is More" Mantra.

Looking back, I noticed I only posted once a month in April, May, and June. The first half of this year was lousy health-wise... my worst time ever. It began with a January fall that fractured my hip, which led to a three-week hospital stay for hip replacement and rehab. Other issues -- with names I'd never heard of before, like hyponutremia and orthostatic hypotension -- added to my miseries.

Those problems simply exacerbated normal health declines associated with my aging (I "celebrated" my 88th birthday in May) and nearly ten years of diagnosed Parkinson's disease.

To Blog or Not to Blog
That was the question I debated. Even before this year's setbacks, I knew my blog was becoming another example of my obsessive/compulsive/addictive tendencies. "Anything worth doing is worth overdoing" was my way of dealing with cigarettes, alcohol and sex.

I could have spent all those hours at the computer in other ways like exercising, meditating, or enjoying other pursuits.

That's the downside. Here are some positives:
  • I enjoy working on the blog. Both the writing and the researching are fun.
  • Feedback from readers tells me that the blog helps others who are struggling with issues stemming from Parkinson's disease and aging.
  • Working on the blog has given my life a sense of purpose and passion. Researchers have found that having a purpose is associated with happiness, better physical functioning, even better sleep. I'll take that!
  • Anul Gawande's bestseller Being Mortal explores our society's reluctance to talk about death and dying. As my family and friends know all too well, I'm willing to talk about anything.
I've always enjoyed telling others about my travels to new places. I'll be using this blog to report on my final journey.

June 3, 2017

Once Again, My Excessive Drinking Has Proved Troublesome. But this Time, it's Water, not Vodka.

The first half of 2017 has brought some of the worst times I've had since being diagnosed with Parkinson's disease (PD) ten years ago. But now, I sense I'm on the cusp of a turnaround. Family members and friends who see me regularly have remarked on how much better I seem.

In early January, I sensed something had gone wrong with my balance... that I was at a much greater risk of falling.  Sure enough, I fell January 20 and fractured my right hip. I lost my balance getting up from my desk chair, and down I went.

Coincidentally, I had blood work done on January 19. Results showed a low level (129) of sodium. The normal blood sodium level is between 135 and 145 MEq/L (milliequivalents/liter). At Sibley Hospital, my hip replacement surgery was delayed because pre-op blood tests showed low sodium (121).

Shortly before the January fall, I had started a new med -- tolterodine -- to deal with my excessive peeing. The coincidental timing made me jump to a conclusion: that this new drug had caused the low sodium, even though the list of common side effects did not include that result.

I stopped taking the drug immediately after I fell. But the low sodium readings continued, so I abandoned the theory that tolterodine was the culprit in my fall.

"Too Much of a Good Thing Is a Good Thing"
I have often said (only half jokingly) that in my earlier years I used this country music song title as my personal mantra. Over the course of my 88 years. I've dealt with the problems I created for myself by indulging -- and over-indulging -- in cigarettes, alcohol, food, and sex. It appears I may have done it again... this time with water.

May 26, 2017

My Blog Just Earned THIS Award:



What a pleasant surprise to receive the following email from Maegan Jones, the content coordinatior with Healthline.
Hi John, 
Healthline would like to congratulate you on making our list of the Best Parkinson's Disease Blogs of 2017! Our editors carefully selected the most up-to-date, informative, and inspiring blogs that aim to uplift their readers through education and personal stories. We’re glad to have you on the list! Congratulations and keep blogging!
OK, I'm one of NINETEEN blos about PD that Healthline recognized. Still, I'm familiar with some of the others, and am happy to be in their company. Here's the full list.

Healthline described my blog this way:
John Schappi was diagnosed with Parkinson’s in 2009, at 80 years old. If you’re older and living with Parkinson’s, you might relate to his blog. He discusses the various struggles he’s had to overcome, such as coping with Parkinson’s after hip replacement surgery and exercising after surgery. Despite his challenges, he aims to live life to the fullest, and he inspires others with Parkinson’s to do the same.
A nice gift on a guy's 88th birthday.

Last year Healthline also gave my blog this recognition by including it on the list of the  Best Parkinson's Disease Blogs of 2016. 

May 3, 2017

My Chronic Problem with "Orthostatic Hypotension" + My New issue with Hyponatremia = the Worst Time I've Had with My Parkinson's

What follows is the text of an email I sent to my internist, my neurologist, and the doctor I see about blood pressure. The note describes two setbacks from last last week. These incidents illustrate why I've been having the toughest times yet dealing with Parkinson's disease (PD). 

The culprits? Orthostatic hypotension and hyponatremia.

Here's that email:


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These two conditions -- orthostatic hypotension and hyponatremia -- are increasingly impacting the quality of my life. They are major threats to my physical well-being. Witness these two incidents that happened last week.

1) Wednesday Lunch
I'd been looking forward to this lunch with a treasured friend who will celebrate her 88th birthday in July, two months after mine. I was thoroughly enjoying our reminiscing, but toward the end of the lunch I sensed that my blood pressure was dropping and that I was about to have an attack of orthostatic hypotension. 

Sure enough, I ended up of having to get one of the waiters to hold me up as I tried to use my walker to get to my friend's car. On the drive home, I called my part-time caregiver so he could meet us at the house. He had to pick me up and carry me inside.

I have been having these so-called orthostatic hypotension attacks with increasing frequency and severity for the past year or so. The diuretic blood pressure medication prescribed when I was in Sibley's Renaissance rehab center seems to have triggered even more attacks.

Also compounding my current malaise is the newly diagnosed hyponatremia. The low level of sodium was first noted in the blood work done in Dr. Marcus's office just before I fell and fractured my hip.
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