April 10, 2013

My Parkinson's Disease, Prostate Cancer, and 2013 Travel Plans

Yes, there definitely is a link between my travel plans for the rest of this year and my two chronic ailments.

Parkinson's Disease Honeymoon
PD in Brief:  Parkinson's disease is a progressive degenerative neurological disorder affecting more than 1.5 million Americans. The highest incidence occurs in people over 60, but there are an alarming number of cases being reported of PD in people under 50.

Parkinson's is characterized by slow movement, walking difficulties, posture instability, rigidity or stiffness in arms, legs or neck. There are often tremors, mostly in the hands at rest. Secondary symptoms may include depression, confusion, difficulty in speaking and/or swallowing, and facial "masking."

There is no cure yet for PD, but the drug levodopa -- converted to dopamine when it reaches the brain -- is the standard treatment. Unfortunately, patients on extended levodopa treatment often end up with dyskinesia, the uncontrollable thrashing about we see in Michael J. Fox, Mike Tyson, and other public figures with PD.

PD and me: I was diagnosed in September, 2010, when I was age 80. But four or five years earlier, I was experiencing the early warning signs of PD: loss of smell, restricted swing in my right arm when I walked, and  balance problems. My diagnosis came late because I didn't have the resting hand tremors -- the most common red flag that PD is present.

It turns out there are two subgroups of people with PD: one dominated by the tremors, the other by postural instability and gait difficulties. I fall in the posture/gait subgroup.

Progression of PD: There is a consistent finding that people with tremor-dominated PD progress more slowly with the disease than those like me with postural and gait difficulties. Some researchers suggest that the actual progression may be pretty much the same for both groups and that the "apparent" faster disease progression of the gait-dominant group results from delayed diagnoses, since we lack the tremor. I vote for this explanation!

With almost any disease -- and especially with PD -- the progress varies greatly from person to person.

Newly diagnosed PD patients will typically experience a "honeymoon" of three to five years, during which side effects aren't too disabling. After that, PWPs will begin experiencing "on" and "off" periods with each dose of the levodopa. During the "off" periods, the drug's remedial effect wears off. And the other PD symptoms become more disabling.

I'm still enjoying that "honeymoon," even hoping to extend it with therapies I've discussed in  this blog: the "BIG" exercises and a PD diet that provides what my body needs without using dietary supplements. I do take two supplements I hope will prolong the honeymoon: the serotonin-booster 5-HTP, and the "spice of life" curcumin. For more info about these supplement, just enter "5-HTP" or "curcumin" in the blog's search box.

My Prostate Cancer Reprieve
My cancerous prostate was removed in January 2005, the first month of my retirement. Unfortunately, post-operative PSA readings showed that some cancer cells remained. Fortunately, the subsequent PSA readings in my semi-annual checkups over the next 16 years showed a very slow rise from near zero to 4.0.

But last March, the PSA number jumped sharply to 9.4. My urologist recommended a bone scan, which gave no sign that the cancer had spread to the bones. I was relieved at my September checkup that the PSA had fallen to 7.15. Then last month, my PSA had jumped to 11.0, and my urologist scheduled another bone scan.

When my urologist called with the results a few weeks ago, I was pleasantly surprised. The scan showed no evidence that the cancer had spread to the bones. It also indicated significant healing on the fractured vertebra -- the result of my car crash in August, 2011. As if that good news weren't enough, there was less arthritis apparent in my lower back.

It's rare these days to get a medical report indicating I'm better today than a year ago! The scan results confirmed what I've been experiencing: a considerable lessening of the lower back pain I've lived with since the car crash. I attribute this progress to my physical therapy for core muscle strengthening. Coincidentally, I had my last meeting with my terrific physical therapist yesterday. But I'll continue the exercises. They work!

Time to Enjoy the Honeymoon &amp Reprieve: My Travel Plans
So the back pain is lessened, the Parkinson's disease hasn't become disabling, and the prostate cancer hasn't yet spread to the bones. While there may be dark clouds in the long-range forecast, it's time to take advantage of the current hiatus. So, here's what I've planned for the coming summer:
  • I've signed up for a week-long cruise, beginning 12 June from Vancouver, Canada to Fairbanks, Alaska. I'll do this one solo.
  • I've rented an apartment for the week beginning 19 July on the Île Saint-Louis in Paris for myself and my son and his companion. We picked this week because it will give my avid cyclist son the chance to see the end of the Tour de France.
  • The three of us will then spend two weeks in London, Scotland, and the Swiss Alps.
  • We'll end up on August 11 in Venice, where we'll be joined by my married granddaughter, her  husband, and their two daughters (2 and 7), and by my other granddaughter and grandson. The four generations of Schappi's are booked on a Venice to Barcelona cruise from August 12 to 22.
As I've said before, I've often lived my life according to Mae West's advice that "anything worth doing is worth overdoing." Have I done it again with these plans?

I hope not. For both the Alaskan and Venice/Barcelona cruises, I've picked the Regent line. It's pricey but it's smaller and quieter ship, not a Carnival.  And everything is included in the package price, including 24-hour room service. I'm looking forward to starting the day with a relaxed breakfast in my room, weather permitting out on the balcony. The cruise ships give me ample opportunity to pace myself, much as I would at home on my back porch, which often isn't habitable in the heat and humidity of Washington summers. 

The bouncing around Europe from Paris to London to Scotland to the Alps sounds exhausting. But it needn't be. I've been to all these places before, most of them several times. So I've done all the must-see attractions.  I envision much of my time sitting, reading, and watching in the Luxembourg Gardens in Paris, Hyde Park/Kensington Gardens in London, a nice country inn in Scotland, and scenic train rides in the Swiss Alps.

I also hope to travel to the Parkinson's World Congress in Montreal in mid-October. I've been talking about this with my good friend Daniel, my chauffeur on a trip to Turkey in 2010. We're thinking of renting a car and driving to Montreal, first stopping in my home town of Ithaca where my brother lives. On the way home, we may stop someplace in the Adirondacks. The fall foliage should make this a beautiful drive.

I recommended in January that everyone consider making THIS New Year's resolution: live 2013 as though you had a progressive disease (or two). It's a great incentive for making the most of the now. 


2 comments:

nancy downer said...

Perfectly wonderful!
God Bless Mae West.
Thanks for reminder...now is it.

Kimberly Burns said...

Thank you for sharing your wonderful story. I really appreciate it. My alternative prostate cancer treatments center likes it so much. Keep sharing!

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