Patient Stories

Ten Years After, by Dan Stark

Or eleven years after, to be precise.  I used to tell people considering “Deep Brain Stimulation” that it gave the typical Parkinson’s sufferer ten years of relief, during   which the symptoms would be relatively  minor. The bet would be, I would say confidently, that sometime during those ten years, another break through would be achieved.   In other words, DBS was a way to buy time. Still, ten years is no small achievement, particularly for those who have no other alternative but to face the crushing symptoms without a mythology of hope at all.

For slightly more than a decade, DBS had performed its wonders on me, removing the shakes that had accompanied my attempts to beat back Parkinson’s symptoms with medicine alone.  But because DBS masks the symptoms rather than affecting the underlying disease, it will in the end fail to protect the Parkinson’s patient.

My experience is typical. I had DBS just under twelve years ago. Things went so well that I became a huge fan of the procedure. Then came a one-two punch that has me still reeling.  The first blow was self-inflicted.  In April, one of the batteries powering my neural implants reached levels too low to function.  That was my fault; one should monitor the batteries and replace them in advance. Because I hadn’t, I got a full taste of what life would be like without the stimulators. Fortunately, it was the unit on my right that went out, because that controlled my left side, meaning I still had some functionality on my right side. I was right handed so I could still clean myself after going to the bathroom.

Swallowing was another matter.  I couldn’t take my pills because I found it difficult to swallow. I quickly learned that some techniques enabled me to get down a pill some of the time while others would not. (For instance, too much water would prevent me from swallowing while a small trickle of water would generally enable me to swallow a pill.) I became alarmed because I had had a cardiac arrest in 2009, and to stop taking my heart pills abruptly was not advisable. What if the swallowing problem became worse?

I wrote an email to my doctor explaining the new crisis. I’m surprised quite frankly that they didn’t throw up their hands and give up.  I nearly did. The problem was that among the medicines I was taking were certain blood thinners that made operating to replace the batteries highly risky. Their response was to order me to go to the emergency room, check myself in, and wait until enough of the blood thinners had passed through my body to improve the odds. I did so, but the three days I waited was as close to hell as I ever want to get!

As soon as the batteries were replaced my body began to return to normal.  The second punch was that “normal” started to change. At first it was just small things, but it became hard to dispute that I was falling more — sometime small spills that I could explain away; sometimes-spectacular spills that I had to acknowledge. Taking out the recycling resulted in my losing my balance, and ending up face down in the street.  I was able to break my fall with my hands, at a price of fracturing my left wrist.

To limit the risks, I began to limit my activities. Someday I will write the definitive book about moving without lifting anything heavy. In the meantime, know that I moved into a new house I had been working on in the North Carolina mountains, without the “luxury” of being able to lift a box without losing my balance and falling.  Yet I managed, due to the love and hard work of friends like Pat Oakes, my daughter Lily, and my siblings David and Debra, who helped me move into my dream home, perhaps too late to fully enjoy it.

Postural instability is only one of the new realities. I get stuck fairly frequently as well. And I “gallop,” that is, when I do get going I move my feet very quickly, ending up with me running or ‘galloping” when I really only wanted to move a few feet in one direction or another.  All of this is of great concern because it is a threat to my ability to walk.

I had my ten years, and that was the deal, right? True, but that seems so hard to accept now. With all the wonderful work being done by the Fox Foundation and others, what are the improvements to treatment available now as compared to ten years ago? As one desperately in need of a different answer, it pains me to report that the answer is that there is nothing more that can be done now than was done then.

At the risk of beating a dead horse, I am going to revive a proposal I made ten years ago in Silence of the Bunnies. President Trump, I ask on behalf of a population of people too much in pain to ask for themselves: fund a ten billion dollar research effort to find cures for ten diseases, a billion dollars a disease. (And hopefully, make Parkinson’s one of the ten.) Attract the best minds possible, give them their mission of finding cures within two years and then let them go without further red tape or prescription. Think of it as a Manhattan project for ten scourges that bring misery to millions! Just imagine the good that could be done if this results in a cure for even one of the ten! Imagine the joy that would be brought to millions of families.

It could yield a legacy that would last forever. And like all good deeds, it would create a swath of thankful people, too small perhaps by themselves to make a difference, but linked by family and friendship to many more.

For me and millions more like me, it is the only chance we have left.

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