What scares you the most about your future?
This was one of the many questions I was asked last week when I volunteered to sit with a group of medical students and answer questions about my Parkinson’s disease. I was happy to do this as I believe firmly that those in the medical profession need to be educated about medical conditions. I realize that they already have a rudimentary knowledge of Parkinson’s disease; however, their knowledge is filled with words like basal ganglion, severe pars-compacta nigral-cell loss, striatum, and mitochondria. My knowledge is infinitely wider and contains words like oh fuck and this floor really needs to be cleaned.
These last words are usually uttered when I have an impromptu, involuntary inspection of our kitchen floor.
You can easily see by this that the gap between what the medical profession knows and what we, those of us living with Parkinson’s, know is big. It’s not just a gap; it is a canyon on a Grand scale. The difficulty that this presents to patients is huge, especially when those in the medical profession sometimes seem to feel that they are the ones who have the special knowledge, not us. I wasn’t sitting with those medical students because I was being nice. It is my duty to impart my mature wisdom to the younger generation of doctors.
The questions were those I’ve been asked many times. How did you react when you were first diagnosed? How does your Parkinson’s affect your family? For this question, it would have been much better to ask my family. I could say a few things but I’d only be guessing. Their answers would be much more colorful, even if I was listening in.
They asked very specific questions about what my dystonia does and what side effects I have from my medication. It’s easy to look at all these as little details that I rattle off to each doctor I see. It’s harder to put it all together. The question they didn’t ask was this: What does it feel like to have Parkinson’s disease?
This is what I would like doctors to know, because the world is just a little different for me now:
When I ask a clerk at the store where I can find something, they immediately take off at a dead run to the side of the store farthest from the point where I am standing, and they seem to expect me to follow them. After about 3 seconds, they’re out of sight. If I’m shopping for groceries, I get halfway through the store when, for some reason, I notice that the words on the store signs have run together. The cart is difficult to push, too. Do they make carts anymore that can go through the entire store without slowing to a crawl? By the time I get through another row, at snail’s pace, not being able to read the writing on the packages, I give up and go home. An hour’s nap will help me recover.
I can drive and do, but only when I feel safe. I don’t drive much at night these days because often I find that the street lights, stop lights, and car headlights and tail lights have been replaced by brilliant many pointed stars which radiate light in all directions, confusing me so I am not sure where the lanes are on the road. I also only drive when I am well rested because the route between our house and our school seems three or four times longer than it used to be. When I get home, I take another nap.
I also like to cook. This is when I am assured some time to myself. Everyone stays away from the kitchen when I start cutting up vegetables. Now, I usually sit on a high lab stool as I do my chopping, but one never knows when I’ll decide to practice balancing on two feet. I’m not nearly as good at this as I’d like to think I am, and when I lose my balance, watch out for the hand holding the knife! This is also the time when I do my impromptu floor inspections. Chris has been very bossy with me lately about using the stool. I don’t know why? I keep the floor cleaner this way. I’m glad when dinner is in the oven. Then I can get a little nap in before beginning the task of eating.
I eat just fine. I like everything (except lima beans and sardines) but at night I become a mushaterian. I eat anything mushy or semi mushy that I am served. I eat large bites of meat only when I think Chris needs to practice his Heimlich maneuver skills. I am also on the dystonia diet. This doesn’t require any special foods, just a unique hand exercise. It goes like this: I reach out to take food on my fork and just as I am about to spear the piece of broccoli or chicken, my hand snaps backwards. On other occasions, my arms will both pin themselves to my chest and I can’t move them. If I’m lucky, my family will help to gently pull my arms down so I can continue eating. If dinner is especially good, they might decide to just have more for themselves. I also have the opportunity for this type of hand exercise whenever I write or sign my name. Holding my right arm down firmly with my left hand is the one way I have found to get around this one.
Taking long walks used to be the way I would relieve stress, think things over, and get fresh air and exercise. A long walk for me now is half a block. Beyond that, my legs start to turn in and I get all twisted up. I use a walker, sometimes. It helps a lot but I feel silly. When I start out I certainly don’t need it. It’s just when I’ve been walking for more than two or three minutes that I start appreciating it.
My medicines work incredibly well. As many of us know, it takes a cocktail of medicines to keep us going. Mine are adjusted just about right so I can function well. It’s an adventure getting the medicines at the right place. Starting with a small dose, I titrated up until my symptoms were relieved. If I went up too fast, my body would scold me fiercely by going into what the medical community already knows as “dyskinesias”, and I know as, “Oh God, here I go again”. Each drug has side effects, too, and I am sufficiently wary that I keep my medicines at the lowest dose possible to get some relief. At times, my doctor would like me to increase my dose. I respond with the question, “How normal do I have to be?”
Regardless of the miraculous work of the drugs, by evening time I am tired and nothing works. My vision gets funny and my speech slurs. I hold on to things when I walk. If by chance someone drops something on the floor or the phone rings or there is any kind of sudden sharp noise, I startle so badly that I may fall. My neck hurts, my muscles ache all over, and I tend to get a bit queasy. It's then that I consider Medical Marijuana. I never truly knew the meaning of the word “exhausted” until I had PD.
People who don't know me well, often say they would never have known I had Parkinson's. I look perfectly normal to them and their expression tells me they are wondering if it's just my over active imagination. People who do know me well, often look at the clock and ask me if I've remembered to take my medicines. They're wondering when the meds will wear off and whether or not they'll have to give me a piggy back ride to the car.
If all this sounds dire and depressing, get over it! For you young doctors-to-be out there, it’s happening to your patients, not you. Not most of you anyway. With the prevalence of PD, more than likely one of you will experience this in the future. To tell the truth, I don't find it depressing at all. Everyone goes through challenges in life, in one way or another. I don't think my situation is more difficult than someone else's; its just different.
So, what scares me about the future? It’s not that bad, really. Think about it! I get a good physical workout everyday without even going to the gym. My posture is better than it’s ever been because my dystonia pulls my shoulder blades back. I get to stay home now because it’s too exhausting to work, even part time. I’m more available to my husband and my kids. I get to see my grandson often. I don’t have time to worry about things I can't control. I have a family, my grandson, and my elderly parents to care for. My contortions, as I try to move from place to place, can be quite entertaining to others. I laugh a lot. I have my art work to complete and, after Christmas, I’m planning on spending just a little time each week volunteering with second grade reading groups at our school.
I don’t stop long enough to think too much about the future, and when I do… I’m usually napping.