by Kathy English
PHYSICAL AND MOTOR CHANGES
An optimist would answer that question by saying that since Parkinson’s in and of itself does not cause death, it is not a terrible disease. Too, in most cases Parkinson’s takes a while to get really nasty, so the early symptoms are mild and there is time to get used to it. But for the person who has the disease, all its many guises make it truly daunting. Characterized by wild ups and downs that fluctuate against the steady beat of chronic symptoms, it makes every day a new experience. The physical changes are well-known – slowness, tremors, stiffness, fatigue, an inability to sleep, troubles with balance and walking, a decrease in vocal volume, dyskinesia or involuntary movements, difficulty swallowing, and double vision. Stiffness and weakness cause joint and muscle pain, poor balance, and dangerous falls. Double vision makes it difficult to read, watch television, or drive a car. Indeed a host of secondary illnesses seem to occur during the course of the disease. Dealing with these physical matters requires courage and energy.
People with Parkinson’s are slow and deliberate, and out-of-step with this fast-paced culture. Nothing raises the blood pressure of the general populace like a pokey person in the way. If more people understood that the slowness can’t be helped, there would be less embarrassment. Handwriting becomes small and the letters are drawn close together, until it is finally illegible. Thinking and thought processes slow down; the right word is elusive, and you can’t recall the thought you wanted to communicate. And then there is falling and its consequent injuries. Plus some experience hallucinations both auditory and visual. For me, the auditory delusion is musical. I hear a strong tenor voice leading a large choir in seasonal music. The visual delusion involves seeing mailboxes sporting heads covered with orange hair, or parking meters holding hands and crossing the street. None of these is frightening, so I take them in stride. The more sedentary pastimes are also affected. Stiffness and pain prevent the smooth shuffling of cards, the gentle movement of needles and paint brushes, and accuracy and expression at the piano.
EMOTIONAL DAMAGE
Besides the physical effects of Parkinson’s there is a slew of very subtle emotional changes. These are sometimes alluded to in discussions of depression and anxiety, but are not covered in any depth. The inner feelings of isolation, embarrassment, fear, and the sense of being left behind are powerful emotions and profoundly affect the psyche. The disease unabashedly plucks you out of social groups that require more than you can give. You can’t join friends in competitive activities that used to be part of your social life. It jeopardizes your participation in card clubs or knitting circles due to stiff, weak fingers. Even gatherings that just involve talking become difficult because the volume of one’s voice diminishes and words sound muffled. People say “what?” or worse, nod in agreement when they don’t understand a word you’ve said. Fear of the future is palpable and crushes any plans you might make.
Parkinson’s is hard to ignore because it affects daily living and your whole social fabric. It isolates you, perhaps more than most diseases. It changes the contributions you make to society and diminishes their effectiveness. It sets you apart in a world that likes uniformity. I remember the night my daughters took me to dinner to strengthen our female bond. Or so I thought. It was really to discuss my behavior. They said, “Mom you have to see a doctor. Something is wrong. You catch your purse on the steering wheel, you trip over unseen faults in the sidewalk, and you drop your hat and gloves followed by all the contents of your purse.” I gulped in dismay. “Maybe you’d both better move back home,” I quipped. But inside I felt lonely. I was afraid that something was going to threaten my place within my family. .
The neurologist confirmed the diagnosis – “ just like Ali and the Pope,’ he said, as if that would help. After a nervous silence, my husband said a wonderful thing, – “This will be an adventure for both of us.” I think his part of the adventure was more than he bargained for but I know I can rely on his close presence and kindness. So I in turn, have picked myself up and asked not “why me,” but “why not me.” And I’ve tried to lighten his load and make living with me, a joy. This means a lot of pretending.
New medications posed difficulties with the side effects they caused. When I wasn’t taking a pill, I was exercising to improve my balance and prevent falling. Eventually, I had the DBS (deep brain stimulation) surgery which gave me substantial relief from the on/off periods, the stiffness and the perpetual movements of dyskinesia.
ONE WAY TO HANDLE IT ALL
After the DBS I was still somewhat limited, so I decided this was an opportunity to face the specter of Parkinson’s with a new attitude. I tried to laugh more and turned memories into funny stories. I would recall the time I slammed the kitchen door on my way to the car, caught my skirt in the lock, and after an hour with my skirt held fast and my phone in the car, I had to ask the mailman to cut my skirt away.
The notion of turning tears into chortles has worked for me. I hope it will for you. There is nothing like a deep belly laugh to bring you back to the “normal” and dispel the frightening complications of Parkinson’s. The best way – maybe the only way – is to find the humor in those events. Sometimes it’s necessary to fabricate humor where there is none, but that very attempt at focusing on something else distracts from the horror at hand. Laughter is therapeutic and helps protect you from the sadness of depression and anxiety. It is much easier to maintain this frame of mind if the people around you are easy laughers, and indeed, those are the friendships I am most comfortable with. But in the end it is I who must sustain this mood. It takes practice, but what fun you’ll have.
