Thank you.
My name is Fran Squire, and I'm a person living with Parkinson's. I was diagnosed 16 years ago, when I was teaching grades 7 and 8, completing a doctoral thesis in education, and raising two young children.
The story of diagnosis is the first hurdle that people with chronic disease must face. After finding it difficult to turn and negotiate a ski hill in 1994, my husband and I ended up several months later in a neurologist's office to hear the outcome of a battery of tests.
The astonishingly young doctor, whose name I have long forgotten, peered over his titanium frames and asked, “Do you live in a two-storey house?” Yes, I answered. “Then you'd better start thinking about moving; you're going to be severely disabled in five years. The good news is you don't have a brain tumour, but the bad news is you have Parkinson's.”
Parkinson's! But I'm only 49. Isn't Parkinson's for old people? What do you mean, “disabled”? What is Parkinson's, anyway?
But he was already closing my file—closing my file, just like that.
So here I am today, and I'm still doing okay. I am lucky, because I live in a city where access to movement disorder specialists is available, and the onset of my symptoms has been steady but slow, and responsive to medication. Others are not so fortunate.
My way of coping is to be involved, to be in control of something. I'm the past chair of the board of Parkinson Society Ottawa, where I have volunteered for nine years as a board member and editor of the newsletter. I have just completed a six-year term on the board of directors of Parkinson Society Canada, where my main interest and involvement was on the research policy committee. During my tenure we added a psychosocial research program to the scientific biomedical grants already in place. This strand of research focuses on quality-of-life issues for people living with Parkinson's and includes understanding and treating non-motor systems. I am encouraged by this direction, because as much as a cure is necessary, we still have to function within the world while we wait.
What I would like to tell you today is what Parkinson's is and what it isn't. It is not just a little tremor that affects old people. The tremor is the tip of the iceberg. Parkinson's is a complex disease that affects every aspect of an individual's life. Yes, there are the visible physical symptoms--the tremor, the awkwardness, the slowness in walking. But there are cognitive and emotional challenges as well--depression, anxiety, cognitive deficits, and sleep disorders. Parkinson's also affects entire families, with different implications at various stages of the disease.
It is called a degenerative neurological disease, and the word “degenerative” is full of meaning. You never get better; you just manage the symptoms with ever-increasing combinations of drugs. Each person's progression and treatment is unique. Often the side effects are worse than the symptoms. A cause has not yet been determined, and therefore there is no cure. The major visible symptom is a resting tremor. The other symptoms have to do with the whole system slowing down: rigidity, slowness of movement, poor balance, an awkward gait, trouble with swallowing, constipation, slowness of speech, lowered voice, loss of articulation, facial masking, lack of expression, sleep disorders, and depression.
Parkinson's is not a sexy disease. The stigma attached to Parkinson's is shown to each of us who feel the sting of an accusatory stare or the laughter from those who do not understand. No, I'm not drunk; I just stagger and lose my balance a lot. I often pitch forward when I walk and I shake when I eat.
I sometimes feel embarrassed, but there is one place I feel comfortable: within my Parkinson's support group. I'm in another smaller group of women--we call ourselves “the ladies who lunch and shake a lot”--that meets for support and friendship. We were saddened last year by the death of one of our group, and now yet another single mom, 42 years old, is dependent on a wheelchair and a personal care worker at night. Although they receive no government funding, the regional organizations try to provide many such support and educational services that help both the person living with Parkinson's and their care partners.
In closing, I would like to share an entry from my journal written several years after my being diagnosed. I was just beginning to understand the word degenerative. I think it describes the future and emphasizes the need for collaborative strategies, such as the proposed brain strategy, within the health care community to provide a brighter future for those of us living with Parkinson's.
Parkinson's is like moving inexorably down a steadily darkening tunnel. There is still some ambient light as you begin moving, but it quickly disappears. There is as yet no end to the tunnel, no glimpse of light, no room for a U-turn. For some people with Parkinson's, movement can be dyskinetic, your body and mind disconnected, arms and legs flailing with jerky spasms, somewhat like being trapped in a washing machine on the spin cycle.
Or at the other extreme, the body can be rigid and frozen, unable to take the next step. You can't call out for help, because your voice is diminished in articulation and volume. Perhaps you see hallucinations—other people or creatures in the tunnel who may be friendly apparitions or terrifying, mind-crushing delusions.
People may misinterpret your journey because your face shows no emotion; the mask of Parkinson's distances you farther from your social world. You may become seriously depressed. You shuffle down the tunnel, walking awkwardly with a peculiar gait, lurching off-balance every few steps. If you are fortunate, you will recall where you intended to go and why.
Thank you.