I used to tell people considering deep brain stimulation — which involves the surgical implantation of electrodes into the brain — that it gave the typical Parkinson’s sufferer perhaps 10 years of relief, during which the symptoms would be relatively minor. The bet — this is, after all, brain surgery that carries some risk of serious adverse results — would be that sometime during that decade, researchers would come up with a real solution. In other words, DBS was a way to buy time. Still, 10 years is no small period, particularly for those who have no other hope.
My experience is typical. I had DBS just under 12 years ago. Things went so well that I became a huge fan of the procedure.
But DBS works on only some Parkinson’s symptoms. (Drooling, for example, is not affected.)
For slightly more than a decade, DBS performed wonders on me, eliminating the shakes that had accompanied my attempts to beat back Parkinson’s symptoms with medicine alone. But because DBS masks the symptoms while not affecting the underlying disease, in the end it will fail the Parkinson’s patient.
For me, the failure was in the form of a one-two punch. The first blow was self-inflicted. In April, one of the batteries powering my neural implants died. That was my fault; one should monitor the batteries and replace them in advance. Because I hadn’t, I got a taste of what life would be like without the stimulators.
Swallowing became a problem. Taking my pills became an adventure. Some techniques enabled me to swallow a pill sometimes, while others did not. I became alarmed because I had had a cardiac arrest in 2009 and needed to take my heart pills. What if the swallowing problem became worse?
I wrote an email to my doctors explaining the crisis. Among the medicines I was taking were blood thinners that made surgery to replace the batteries highly risky. The doctors ordered me to go to the emergency room and wait until enough of the blood thinners had passed through my body to improve the odds.
I could barely eat, swallow or move, and I was in tremendous pain. The three days I waited were as close to hell as I ever want to get!
Fortunately, it was the stimulator unit on my right, which controlled my left side, that had gone out, which meant I still had some functionality on my right side. Being right-handed, I could still clean myself after using the bathroom.
As soon as the batteries were replaced, my body began to return to normal. The second punch was that “normal” started to change. It became hard to dispute that I was falling more — sometimes 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 to a new home — a house in the North Carolina mountains — without lifting anything heavy for fear of losing my balance. Yet I managed, with 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 — though, perhaps too late to fully enjoy it.
Postural instability is only one of the new realities. I also get stuck — I find it difficult to take a first step — fairly frequently. And when I do get going, I move my feet very quickly, galloping when I really wanted to move only a few feet. The first time I ran past my brother, I caught his unguarded expression, which said (loosely translated), “What more, dear Lord?” This is more of a concern than the drooling because, while both make me the life of the party, galloping also threatens my ability to walk.
I had my 10 years, and that was the deal, right? True, but that seems so hard to accept now. Despite all the wonderful work being done by the Michael J. Fox Foundation for Parkinson's Research and others — the government allocated about $168 million for Parkinson's studies in 2016, according to the foundation — what has improved in the past decade? As one desperately in need of a different answer, it pains me to report that there is little more that can be done now. Oh, certain people get better results from the drugs they take, but by and large the treatments are unchanged.
At the risk of beating a dead horse, I am going to revive a proposal I made 10 years ago in my book, "Silence of the Bunnies." President Trump, fund a $10 billion research effort to find cures for 10 diseases — a billion dollars a disease. Please make Parkinson's one of the 10. 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 10 scourges that bring misery to millions. Imagine the good that could be done if a cure for even one of the 10 is found!
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 hundreds of thousands of people like me, it is the only chance we have left.
Stark is a former AT&T vice president who retired in 2004.
Read the author's earlier posts:
June 21, 2005: Living Large With Parkinson’s