UNDER SIEGE: Fighting Parkinson's Disease
Diagnosed at 49
Diagnosed 7 years ago, aged 49, I qualify as a "young onset" Parkinson's patient. Patient? I'm anything but. I call myself a "Parkinson's combatant" instead. Parkinson's Disease can strike much earlier than it did in my case, of course, and the earlier it strikes, the more you need to organize your defenses from the outset. My father's first cousin in Sweden had PD from his early twenties; recalling his struggles (to the extent I was aware of them), I have some sense of just how lucky I have been over the past 2 3 decades.
Age aside, if you have PD, you're in a fight and let's be honest about this, your chances don't look so good. What you have is a chronic, degenerative neurological disease for which there is no cure, only palliatives, i.e., drugs that address the symptoms, not the disease itself. This means you can mask the symptoms for a time. Sooner or later, those drugs (especially carbidopa-levodopa) will begin to lose their power, and your ability to lead something resembling a normal life begins to disappear.
Sure, our doctors will tell you that this is the best time in history to have PD. Implication: all the current research is bound to lead somewhere. But I think there is nothing inevitable about it. If someone stumbles into a cure, it will be like winning the lottery for all of us.
It's like this: you are the Lord of the March. The castle is surrounded by an invader. As you look out from your tallest tower, the serried ranks of armed enemies and engines of war reach all the way to the horizon. You've sent urgent messages to the King, asking him to send the strongest force possible, but you have no idea whether the message got through. Face it: chances are, you are on your own. Still, if you adopt a sound strategy, you can hold out long enough to do some valiant deedsâ€”and have some fun while you are about it.
You may prefer another image: you're a wrestler. You've been waiting in the ring for a bit, but now your adversary is climbing over the ropes. You look up and get a shock: he's the most enormous sumo contender you've ever seen.
Chevalier or wrestler, your problem is the same. How can you best marshal your resources for this fight? First, you need to do an inventory. There are two kinds of resources: internal and external.
This fight will be on two fronts. Internal resources include morale, will and whatever philosophical or religious weapons your arsenal holds. Many find patience a reliable shield; I'm afraid I lost mine early on. Or you may also find strength in faith -- as I do. Coincidentally, I had converted to Eastern Orthodoxy just before receiving my diagnosis. Prayer and community are powerful allies. I sense that for those who know how to draw on it which involves giving back this resource is inexhaustible.
Other relationships are, if anything, even more important. For some, your closest allies are your spouses. But be warned: even if your marriage is solid, PD will put heavy strains on it, over time. Caregiving is not everyone's cup of tea. You may find that you need to look elsewhere for a primary caregiver; or make your own arrangements for the kinds of help that caregivers provide. Be careful not to take your spouse for granted. Never stop taking care of him or her, too. Make sure there are times when your caregivers are free to follow their own whimsy. As your PD progresses, remind yourself that the more you need them, the more they need time to themselves.
Almost as important as your spouse is your medical team, which brings both internal and external resources to bear. If you do not have a general practitioner in whom you have total confidence, beat the bushes for one. Your GP should be someone to whom you can say anything anything at all -- and who will listen. Your GP should be local. You do not want to have to travel long distances for primary care you may need to do that to gain access to the secondary or tertiary care in due course.
Finding a neurologist is not necessarily an easy task, either, particularly if, like me, you live in a rural area. Prior to my diagnosis, when my then-GP first suggested a neurologist, he recommended someone close to home. When we found that there were no established movement disorders specialists in my state, and my GP continued to resist giving me an out-of-state referral, I fired him. I decided to travel three hours by car and cross two state lines to find a movement disorders center. It was a good decision. The center I chose is among the best in the world; when I visit, I have the sense that I am at the cutting edge.
I also had to fight a skirmish with my insurance company, which initially denied my claims. The out-of-state center I had chosen was not "in network." I represented myself across the table from six individuals, doctors, nurses, administrators and lawyers, representing the company. My argument was simple. Neurologists in my state charged exorbitant fees because there was little competition. The insurance company paid these fees. But fees at the out-of-state center I had chosen (in a city where there is lots of competition) were significantly lower. Why was the insurance company trying to limit me to the more expensive, lower quality care in my own state, when this was clearly against their own interest as well as mine? They got the point, I got my way, and as other PD combatants reach the same decision, fees in our state will come down.
Initially, with a good GP and a specialized neurologist in your corner, you may be all set. But chances are that in time, you will need to expand your medical team. Forty percent of Parkinson's combatants develop depression; I am one of that number. I began by seeking out a local counselor to help me get my demons under control; then, as I became aware that my depression might have organic features connected to PD, and the task of managing my cocktail of drugs was getting more complicated, I sought out a psychiatrist at the out-of-state center. I continue to see both the counselor and the shrink: each has an important role to play.
Early on, I shopped around for the best pharmacy. Of course, a top criterion was price: but I was also interested in making sure I had a pharmacy which remunerated its pharmacists in proportion to their responsibilities and could boast a low employee turnover. I wanted to have a personal and trusting relationship with my pharmacist. I was lucky enough to find a local pharmacy that met my criteria and met Walmart's and mail order companies' prices as well.
Other important external resources: anything that helps you get exercise, i.e., get moving. For some, it's a golf course, a YMCA pool or a tennis court. Whatever you enjoyed before your diagnosis, you can still do until someone tells you not to. If they do, be skeptical. You are the final arbiter. Years ago, after a knee operation, I was told that I would never ski again. I refused to accept that judgment then, and seven years into PD, I am still skiing.
I also persist in playing soccer once a week with the over-35s the group I play with is tolerant, forgiving and funny. At 56 I am the oldest in the group; still, so long as I can shift to goal when winded, I can keep up. But a time is coming when I must move on. I shall miss it, but that ending will also be a new beginning -- because I'll take up something new. Anyone for golf? I mean, anyone tolerant and with a sense of humour?
If you push your luck, as I have, you will run into the occasional injury, and then you want the best orthopedist not just any orthopedist. As a star Parkinson's combatant, only the best for you! The best orthopedist, I have found, will automatically connect you with the best physiotherapists, and once you have made that connection, you will wonder how you ever managed without them.
Another addition to your medical team may be needed when you begin to consider brain surgery the procedure known as Deep Brain Stimulation. For me, this will be a last resort, but barring the miracle we all await -- that time will surely come.
Talking of miracles, I have particularly enjoyed carrying the battle to the enemy by agreeing to participate in studies or trials of various kinds. Important work is done every day in the research community, not just to develop miracle drugs, but also to elaborate mundane things like sensors that permit a physician to check on a combatant from a remote location, or a new concept in Cognitive Behavioral Therapy for the treatment of PD-related depression. It can be a tremendous boost to morale to strike back: like sallying out of the castle and capturing provisions from the enemy's supply train.
But in the end, all of these resources have a secondary purpose: to assist you in maintaining your quality of life. Why does this matter? Always remember Roald Amundsen's words on reaching the South Pole: "My friends, it's good to be alive!" It surely is.
You may have a particular reason for living: a person who needs you (whether they know it or not); a project to complete or a dream to dream and fulfill. So don't spend all your time marshalling resources and moving your knights around on the battlements. Start work on your novel, design project, or painting buy those pigs. You don't have to spend down your life savings to go to South Africa, like Jack Nicholson in The Bucket List. Getting out and about is good -- but you can often do that, and realize a dream, with less expense close to home.
So get started: make PD the prime motivating force for realizing your dreams. There is nothing like Parkinson's for concentrating the mind! Using the disease for your own ends to make you more productive in achieving your own goals -- is like driving off those besieging invaders without the need of a relief party. It's like pulling a judo move on the biggest sumo wrestler you ever saw and using his negative weight as a positive. Once you have put PD to work for you, man: you've got it beat! Yours -- ours -- is the victory! Shakespeare said this so beautifully: "So shalt thou feed on death, that feeds on men and death once dead, there's no more dying, then."