Editor’s Note: Grace Griffith is a retired physical therapist and an award-winning singer and speaker who was diagnosed with Parkinson’s disease in 1998. She recently participated in a Parkinson’s Exercise Study conducted by researchers at the University of Maryland School of Medicine and the Baltimore VA Medical Center. She continues to receive regular follow-up care at The Maryland Parkinson’s Disease and Movement Disorders Center with Dr. Lisa Shulman and Dr. Karen Anderson. Below, Grace reflects on her 25- year career as a physical therapist who worked with Parkinson’s disease patients and her own challenges with the disease.
When I was a physical therapist working in hospital and home settings, I was often struck by the peculiarities of the Parkinson’s cases. These folks would have non-expressive, often nonresponsive faces such that I could not really tell whether they were mentally alert or not. Their bodies were stiff as statues and tended to grow more so if my mission that day was to get them to walk. Great emphasis had to be put on trying to get them to relax and trust that I would not let them fall. Sitting up on the side of the bed felt like falling forward to them.
There are many little vignettes of memories from my 25-year career as a physical therapist. Here are a few more from my Parkinson’s stories.
There was an old man in Waldorf who was living with his son and family. I’ll call him Mr. Doe here. The first time I arrived to see Mr. Doe his son had to speak for him as Mr. Doe’s mouth was stuck firmly open. With close observation, I could discern that Mr. Doe was responding to questions with small amplitude nods or side to side movements and audible but incomprehensible attempts at speech. Midway through the evaluation Mr. Doe’s son administered his Parkinson’s disease medication and said, “Watch him in 20 minutes –- it’s like a miracle.” Sure enough, 20 minutes later Mr. Joe was on his feet and walking rapidly about the house, talking about things quite clearly. It really was as though he had been frozen and suddenly thawed.
Another memory takes me back to an administrative assistant at the church I was attending in 1980s. This woman, “Em” was rigid in her stance and never smiled. I always attributed these things to emotional coldness and lack of spontaneity.
I don’t recall exactly when my first symptom of Parkinson’s appeared. I don’t remember the order of onset of these things but they included a shuffling gait (which I attributed at that time to the shoes I was wearing), generally being late whereas I had always been a speedy and punctual sort, and feeling like “the Invisible Woman” because people did not respond to what I said. The truth is they were not hearing me because I was speaking softly in a whispery voice, which is a common characteristic of Parkinson’s. I didn’t realize how my quality of movement had changed until my patients started making comments about how slow and stiff I had become. I never got indications that I was moving “oddly” except for unblinking children’s stares and store security monitors.
My case is atypical in that my age at diagnosis was young — 42. Also I was eighth in a litter of 10 and one of my brothers had been diagnosed with Parkinson’s disease when he was 42 as well. My brother had served as a mentor/guide to me during those years and I had already begun focused study of the topic for his sake when my own symptoms crept up and surprised me.
I have much more to say than would fit within the scope of this article, but in order to leave it at a moderate length and to make it in educational experience I will list some less well known facts about Parkinson’s Disease.
Parkinson’s is usually a disease of elders and the cause is not fully understood. Research suggests a genetic link and an environmental trigger particularly in the younger onset cases such as myself. Pesticides used in farming are definitely under suspicion.
But let’s go back go Em at the church. When I was early in my own journey with Parkinson’s disease, I felt bad about having been so insensitive in my judgments of Em. I began going out of my way to engage her in conversation which I could understand only by placing my ear very close to her mouth and watching her mouth muscles like a lip reader does. When Em could no longer speak at all, I would stand next to her at social gatherings so she would at least feel like a person who mattered and not just an invisible woman. In her latter years her speech required great effort to understand. Now I knew the discomfort of her cramping rigid muscles and her fear of falling and the isolation that comes with Parkinson’s first-hand.
I am dictating this article on voice-activated software and it’s a good thing I’m fortunate enough to have that because early on my handwriting became difficult to read or write and arduous. I had been high-speed typist until Parkinson’s took away that skill. Now it’s a constant choice between the three — writing by hand (all caps with great focus and effort rather than graceful or playful cursive), dictating, or talking by phone (which requires a headset to keep the microphone properly aimed and to avoid hanging up on my caller by wobbly head movements).
But take heart, my fellow sufferers, survivors, People living with Parkinson’s or however you prefer to identify yourself. I have been living with Parkinson’s for 12 years now and there has been much pleasure in that time. I anticipate more.
I close here with a special request to those of you who have someone living with Parkinson’s in your life as a friend, family member or acquaintance. Don’t assume that someone who is speaking slowly or incomprehensibly and who may not respond with any change in facial expression doesn’t hear you or understand you. Also, do not assume they’re ignorant –- Mr. Joe and Em held PhD’s in their fields, had great active senses of humor and were unusually compassionate people of great depth. Be aware that due to their slowness, coordination problems with dressing and dining, and other such inconvenient limitations, they are probably lonely and a little bit of attention and kindness can go along way towards impacting their quality of life.
Reach out. That woman over in the corner with the slow rigid movements and the mask face that may appear over serious or even angry could be me. Make my day.