Personal strategies learned the hard way for others afflicted with Young-Onset Parkinson’s

“Just the facts, Ma’am” – first, some background on Parkinson’s.

Being a progressive disease simply means that the illness becomes progressively worse over time. Add the word “incurable” and it’s easy to see why a person with Parkinson’s Disease (PD) might have an occasional dark moment.

Parkinson’s is an “incurable, progressive, neurological disease.” Almost all you need to know in three easy words. Let me add a fourth.

Transition – a person with PD is always in transition. Always.

PD relentlessly eats at one’s body and mind, not with imagined or self-induced symptoms, but with the real, measurable physiological depletion of a person’s Dopamine producing capability. Dopamine regulates muscle control throughout the body and also impacts mood.

Levodopa – essentially the pill form of Dopamine – is hands-down the most effective medication to alleviate PD’s symptoms. The proper dosage, however, is critical: too little and the symptoms will not be reduced; too much causes the writhing, loopy, physically exhausting body movements of dyskinesia that make it difficult to function, communicate, or even think clearly.

Levodopa loses efficacy in the treatment Parkinson’s as the disease progresses; e.g. more must be taken today to produce the same positive results of six or twelve months ago. Determining the proper dose and interval between doses is a never-ending task trying to catch the “sweet spot” of nearly normal. As levodopa becomes less effective, the margin between too much and too little narrows until eventually it is gone. That is why PD always wins in the end.

Depression of varying severity is a hallmark of Parkinson’s. PD depression is not a by-product of the constant wear on the body and loss of hope for the future, although many afflicted with Parkinson’s have some of that too, but instead it is a separate physiological entity; it is a real physical symptom. Please go to this link for more info:

But that doesn’t mean that depression can’t be overcome, at least for the majority of the time, by a patient accepting complete responsibility and control of their treatment and taking advantage of periodic moments of relative calm to formulate a strategy to counter PD’s insidious effects. To do so requires creative and proactive responses to PD’s progression every step of the way, doing whatever it takes to tweak medication dosage and timing until something works.

My neurologist is great, but she – like everyone else who does not have PD – doesn’t have a clue on a personal level what it actually feels like to experience PD symptoms. You simply can’t know without experiencing the disease.

My neurologist appointments used to involve a series of questions to try and decipher what was working, what wasn’t, and how best to tweak the meds. This information went through the multiple filters of my best description of a symptom and her attempts to understand how the medications impacted these symptoms. I quickly realized that a more responsive and empowering approach would be to “cut out the middle man” and take control of my own medications. My neurologist is supportive of this strategy, which I greatly appreciate.

This is not to say that my neurologist isn’t a key part of my overall strategy to counter PD symptoms; I rely totally on her advice regarding the safe limits of each medication and whether there are other options to try. But beyond this, all dosage and timing of pills taken are one hundred percent in my control. If a drug regimen begins to prove ineffective, I don’t have to wait for a Doctor’s appointment; instead, I adjust until I find something that does work.

This approach would appear to be obviously advantageous, but in my experience very few PD patients want this responsibility (this is only an anecdotal guess on my part and I could actually be far from the mark). Empowerment is good. Personal lesson learned #1:

Take personal control of your medication regimen.

The second lesson is to step up to each challenge Parkinson’s presents, while looking the facts square in the eye and acknowledging that at the end of the day the disease will eventually win. Keep fighting. Although you will not win the war, you can win individual battles; you can win “small victories.” The sense of accomplishment from these victories can help one handle the pain, fatigue, depression, and disorienting, exhausting dyskinesia.

Try to take on normal challenges accepted in the past, even if this means being in the public eye, a factor that will almost certainly increase stress and aggravate your PD symptoms. Parkinson’s causes anxiety, which causes stress. Stress in Parkinson’s patients usually significantly increases their symptoms. My advice is to do it anyway.

For me, accepting this type challenge acts as a way to go head-to-head with PD on the disease’s home field. It’s a way to push back. It might be difficult at times, even painful, but when such a challenge is met, it turns a small victory into a very big one.

Here are some personal examples. I still serve on the local school board, often run public meetings, and have given two graduation speeches (a third one is coming up in June) to about 5,000 people. I also occasionally have the opportunity to present on scuba diving and writing to at times hundreds of strangers in different parts of the country. Just traveling to these locales can be a physical challenge.

It is not easy. I always have second thoughts before such events, I’m always scared and stressed, and so far, I have always followed through anyway, usually with my walking canes nearby. But guess what – so far, I have never had to use them: just as it was prior to PD, the bigger the challenge, the greater the reward.

Tackling these challenges has given me the confidence to keep diving, but only with a carefully thought out plan to counter symptoms. I’ve found that the more I dive the easier it becomes, and that I’m capable of far more challenging dives than I thought possible even four years ago.

Parkinson’s eliminates many individual choices over time – it feels great to push back at PD on the disease’s own terms and win. It’s a big victory. Personal lesson learned #2:

Step up to new challenges.

Next lesson: exercise relentlessly and creatively adapt your routine as needed. If an exercise becomes problematic immediately flex to a different one. I’ve had to do this so far with running (I had been an avid runner since about age 15), the elliptical machine, and weight lifting. My current exercises are Hot Yoga (modified as needed), the stationary bike, stair climber, hiking, and when all else fails simply walking or doing leg exercises while lying down. Personal lesson learned #3:

Exercise is the key to mobility and a positive attitude: move!

Let me try to tie it all together with a personal example. About four months ago my body began to make a fairly dramatic shift toward the bad. For the past two years my transitions from “off” (too much or too little levodopa) to “on” (the sweet spot) and back were reasonably predictable. My “off” symptoms of greatest concern are extremely forceful muscle contractions in my right ankle and right wrist, causing pain and making it impossible to walk unaided.

To counter I nearly always have two canes nearby (they are collapsible and kept in a back pack) to avoid getting stuck as it can take up to an hour or longer for an additional dose of levodopa to take effect. When periodic wrist pain is too great to use the canes, I also have collapsible crutches.

Some other “off” symptoms include: joint pain, tremor, deep fatigue, loss of balance, sleep attacks, an extreme free-floating anxiety that comes on without warning, and periods of depression. None of these are fun, but the muscle contractions potentially pose the greatest risk to my immediate physical being (i.e. unable to walk and becoming stranded or causing major injury to ankle or wrist).

For a very long time, my PD symptoms were fairly well controlled with relatively predictable doses of levodopa. My other five daily medications remain quite stable, but these are not nearly as effective as levodopa.

Several months ago this regimen no longer worked, not by a little, but by a whole lot. There seemed to be a constant swing between being over or under dosed.

There was no warning: one day the regimen of the past two years worked just fine, and seemingly the next I could not find the “sweet spot” of balance. Being in constant transition between the two physical states of over or under dosed is very, very difficult, tiring, painful, and confusing.

It took me several months, but I think that I’ve discovered a new workable levodopa strategy for this next round. I now cut most of my levodopa pills in halves and quarters, and in the last month I’ve developed a written plan through trial and error. The plan requires 15 specific times during the day and night when I take a pill or pills of different dosage. I’ve got about 15 minutes leeway on either side to make it work, all other things being equal. But all things are never equal.

Feeling ill, being excessively fatigued, working out too little or too much, hunger, or getting cold all impact proper levodopa dosage levels and times significantly. It’s not an exact science, and it requires constant real-time adjustments.

What have not changed are my overarching strategic commitments in countering PD.

I still exercise 6-7 days a week. I’m still on the school board. I travel to Chicago in two weeks to give presentations on the Andrea Doria at the Our World Underwater dive expo. This routine of challenge keeps me motivated and positive, not all the time, but most of the time.

One last bit of advice: if you have PD, consider making it widely known. This helps fend off misunderstandings down the line when one exhibits inexplicable behavior, whether it’s at the local supermarket, an official function, or a friendly get together.

It would probably be impossible to keep PD a long-term secret anyway. It goes back to controlling what you can; I would prefer that people find out that I have PD on my terms. Parkinson’s leaves no choice in most facets of life: it’s liberating to take control over those aspects of your life that you can.

And when all else fails, laugh often and loudly.


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