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