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Dear John You wrote: > so, while I am not in denial nor depression, I have not made >my P.D. known to anyone but my wife--not even my children and grandchildren. > Have lost most of my sense of smell (noticed that peeling a fresh tangerine >which might as well have been a pea pod). My face, which hasn't expressed >much most of my mid-life, is now Quixotic, to say the least, but with effort, >I can still create a grimace that will pass for a wry smile. My voice, which >was never resonant, is losing volume. Right side rigidity inhibits most >favorite physical activities, but I can still walk and with conscious effort >can swing my right arm almost normally. So, you see, no one knows... > I tell myself there is no reason to cause them needless worry, they can't >help me, and I don't want sympathy or pity from anyone, although eventually >they will all know, of course. What I think I will need, when the time comes, >is their tolerance and understanding, maybe even empathy, but before they have >a need to know ? You sound so much like me, John. I was diagnosed in December 1989 with comparatively mild symptoms and have progressed very slowly since then. In my case however I had no choice about telling my children because one of them, an Occupational Therapist, and my wife, a nurse, had me diagnosed (from my occasional right leg tremor and terrible handwriting) some months before I saw a neurologist. Like you, however, I could see no reason for spreading the word around; in fact every reason for not doing so: what if I lost my job? My work colleagues and friends don't need to know anyway. How does one tell people about such a thing without embarrassment to oneself and to them anyway? It's better just to keep quiet about it. After all, they don't need to know, do they? So, for several months, I took my meds in the toilet at work and just kept quiet about it. Paradoxically, during this time, driven by a need for information, I had joined the local Parkinson's Association, had instituted a political campaign to get selegiline released in Australia and become Secretary. And yet, nobody else was to know!! >This is probably less my pride than my sense of shame, which troubles me. >What am I ashamed of ? A mutant gene, an exposure to hazardous substances, >dying brain cells, ...? Looking back now (over seven years), I can't really say what caused my reluctance to tell. I think that I was mostly just embarrassed about and unsure how to raise the subject with colleagues and friends. There my also have been an element of shame involved, but like you I can't see what there was/is to be ashamed about. The break came for me when, we (the Association executive) were having a discussion about the need for public awareness of our condition. And here was I keeping my mouth shut at work!! Obviously I had to tell. I worked at that time in a large government agency, with about 40 people in my branch and several hundred to whom I was known. I was also frequently involved in speaking to large and small groups of other people about my work. Once word started to get around, they would all get to know. How could I manage this situation? My strategy was to select a group of four colleagues with whom I was particularly close. I told them first, explained about my tremor being better when I stood and worse when I sat down and ASKED FOR THEIR HELP to write for me occasionally, to search for information about PD in the media and to spread the word around in our branch before the next of our branch meetings (in one week's time). At this meeting, it was surprisingly easy to explain the situation to everyone in the branch. I also developed a little introductory speil for the outside groups in which I announced my PD, explained the tremor and invited anyone interested to hang around after the meeting. All this worked worked wonderfully well. I think the key to it was in giving people a practical way to help. This gave people something which they could do as a focus for their concern. Many people came to me to offer their own experiences, to offer help with writing, to bring articles about PD. Very significantly (and surprisingly to me), several of them said that they had thought that something was wrong and thanked me for explaining to them. > I would appreciate hearing from any listserv members who have struggled with >this issue, and to know how, when and why they have resolved to disclose or >not to disclose I am sorry, John, that this took so long to tell. I cannot tell you whether, when and how you should spread the word around. You asked for our stories, so here is mine for whatever it is worth. I am very pleased that I was able to disclose. You must decide what is best for you. Please let me know how your wrestling with this issue works out. All the best Bob Graham