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Barbara Mallut wrote: > > David Boots .... whoever you really are (rather than a few lines of type > across my monitor periodically) and wherever you are, after reading your "Open > Letter to God (Revisited)," I felt an immense sense of kinship to you. > > In it's way, your message probably has encompassed much of what many of us > here on the PD list go thru and feel each day. After reading your comments > and knowing so intimately our respective and collective suffering, I swear, > it's a wonder we don't all just pick up and check out!! > > I guess it speaks volumes for that indomitable human spirit (hey... maybe it's > just we're afraid that the cure for the "thang" will be discovered the day > after we 'do the deed?") <rueful smile> Whatever the reason, it seems most of > us stick around for the long haul. > > David - I'm rootin' for ya! Get that pallidotomy... and I pray you'll have at > least the same (or better, 'cause the results on the side that was done are > great) good fortune as I did nearly two years ago. > > For whatever it's worth, I'm sending you a warm and loving virtual hug, 'cause > I feel close to you at this moment. Hang in there, m'friend! > > Barb Mallut, > [log in to unmask] > > ---------- > From: PARKINSN: Parkinson's Disease - Information Exchange Network on behalf > of David Boots > Sent: Saturday, July 27, 1996 9:31 PM > To: Multiple recipients of list PARKINSN > Subject: Open Letter to God (Revisited) > > Open Letter to God (Revisited) > > A year ago today, I sat in front of my computer (sore, hot, and depressed) > typing an "open letter to God". I was frustrated at the dyskinesia I was > experiencing more regularly and embarassed because of wetting myself a > short time before when I couldn't work the key to open the door to my > apartment and/or manipulate my zipper. I talked of "not wanting to go on > living" and the possibility of getting a pallidotomy at Kaiser Hospital > here in California. It was a great release for me putting my feelings in > writing to a whole group of strangers and "telling PD secrets" that were > making my world seem like some sort of twisted dream. > > I'm still planning on having a pallidotomy done at Kaiser (Sacramento); my > surgery will probably be in September (the original date was mid-May). I've > completed the preliminary videotaping of "on and off performances" that > will serve as a "before surgery" marker (and a reminder of how tough things > were). I'm hoping that the benefits of the surgery will be great and that > any complications (slurring speech, etc.) will be minimal or nonexistent. > > While grocery shopping recently, I had trouble getting my wallet out of my > pocket and returning it to my pocket once the clerk had taken out the > purchase amount. A woman behind me in line saw that I was struggling and > helped me with my struggles. As I was leaving the store, she came up to me > and said "I just want you to know how brave I think you are" (I didn't know > how to respond since I often buy groceries when I'm hungry and/or in need > of supplies and never considered this an act of bravery). So I asked her > "What do you mean?". She said "You know, to continue to go out in public > like this". I realized that I must look pretty bad at times to draw remarks > like this from total strangers. The symptoms and side-effects just go along > with the rest of PD; trying to hide this part from others seems more > difficult now ..... but I still try sometimes. > > I think I've become more reclusive since a year ago. I was invited to a > 4th-of-July dinner party next door and declined at the very last minute. > The thought of answering questions about "what I do with my time" or "tell > me more about PD" gave me much apprehension (and dyskinesia"). The fact > that I did not share the same dreams with this 40-something crowd also > bothered me (I'd overheard some of the people talking about their careers, > families, homes, and vacations). It's very difficult to explain to people > not informed about PD that a good day for me is "being able to shave in the > morning, go shopping OR do laundry, eat a meal out with semi-confidence, > and write or call friends later in the evening". > > For some reason, I was reluctant to give up pants and shorts with zippers > and shirts with buttons ...... no more. My summer attire is shorts and a > nice T-shirt (period). The winter usually finds me in shorts or sweatpants > and T-shirt and/or sweatshirt (have any of you with PD found your > metabolism running just a little hotter than others?..it takes quite a > chill for me to be bothered). > > Making this "YOP fashion statement" has made all the difference in the > world (public restrooms no longer fluster me). I try to utilize "on" times > to reduce the number of "accidents". This is really hard to take sometimes > since I find myself identifying more with people's parents or grandparents > in discussing things like "I lose my balance sometimes during the day and I > fall or bump into things"..."Yeah, I do that too". I look at the bruises > that appear from time to time on my arms and legs and wonder "what is my > rate of progression?". > > I talked to someone in this group who is in their early 50's recently. This > person told me that their PD had advanced so quickly that they were > thinking of checking into a nursing home. I asked "You're really going to > ride this thing through to the end?". They said "I've thought about > suicide; how about you, David?" I replied "Who hasn't?. I told them that > the odd thing about thoughts of suicide is that when I'm "on" and my meds > are working, I rarely think about it...life is do-able. But when I'm "off", > the thoughts creep in and I realize that I don't have the dexterity or > initiative to follow through on anything (ironically, this is a type of > built-in safety mechanism for folks with PD). I've come to recognize these > periods as "the PD-blues" .... when life seems bleak but I do know that it > will eventually pass. I heard someone explain it in this way: > > "I am NOT responsible for the first thought that enters my head. > I am responsible, however, for entertaining that thought". > > I still don't like living with PD;just getting through each day often seems > like one of the "great labors of Hercules". I continue to do what I still > can while patiently awaiting surgery that will give me back some of the > time that I thought was lost forever. I hope they fund/find a cure soon for > everyone's sake. > > Thanks for listening. > > -David BootsDon't let it get you down,my husband has days like that but thinks that God has him here for a purpose and that helps him get through the day. Keep your chin up and look them in the eye and say that GOD LOVES ME<I"M ONE OF HIS CHILDREN. We'll be parying for you. Charlotte