There is an on-line PSP discussion group (listserv). It has been active
now for just one year. Penny Roberts, out of California, started it
with the assistance of the Society for PSP (SPSP), and John Hopkins
Univ/ Mass Gen Hosp.
There are approx.(150?) homes on-line now, but many more people than that.
People with PSP, Caregivers, family, and friends are all welcome. We
have set up a digest mailing also for those who prefer their mail
in a single block at a time, and are working on an archive. Please join
us, and help us help each other.
to subscribe to the PSP on-line discussion group,
address your e-mail to:
[log in to unmask]
in the message space, just say:
subscribe psp <your name>
Mary Helen Krane,
[log in to unmask]
daughter and parttime caregiver to Sarah Cleveland
age 72, diagnosed 2.5 yrs ago with PSP.
..............................
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>
> This LISTSERV is sponsored by the PSP Society (http://www.psp.org/) and
> managed by Bill H Reiter <[log in to unmask]>
>
> This LISTSERV is not moderated.. Therefore, the statements do not
> represent "official" opinions. The PSP Society takes no responsible for
> the content.
> New Member
> Howard Collins
>
> My history is typical - 60 year old male, married to a lovely lady. Years
> spent, thinking I was coming apart, one fastener at a time, or was going
> completely mad one day at a time! Numerous Neurology Clinics, no help.
> Then came the day that a name was attached: Parkinsonism! Finally, a
> treatment regimen could be prescribed, and I could take my life off "hold."
> Research however, reflected that my symptoms were not classic. Why? What did
> it mean? Was something missing? My Neurologist, a personal friend, with
> tears in his eyes, explained that my diagnosis WAS different, i.e., not the
> Parkinsonism that we think of where we grow old and fade away, and unable to
> walk without help, but, with the Sportspage in our hand!
>
> No, mine was a special situation, he allows. A rare derelict form of
> Parkinsonism, but called CBDG + PSP! (CorticoBasal Ganglia Degeneration and
> Progressive Supranuclear Palsy.) Very impressive, I thought, until I found it
> meant that my disease was terminal. Within the next year or so, I would
> likely give up this body....The 20 or more years originally promised were
> suddenly gone; jerked away like a Magician's tablecloth, but with all the
> dishes crashing.....
>
> Many of you are probably dealing with something similar; I am not alone with
> this insidious thing. But, while my mind tells me that I am only one of many,
> my viscera's are silently screaming...
>
> I am (or was) an emotionally strong person, but now, loneliness is creeping in
> as are doubts of personal worth. Prozac and Sinimet have become addictive,
> nebulous 20 Mg conveyances to buy me another day....another week....I guard
> them jealously...
>
> Scared? No Uncertain? Yes There were those times when I fantasized
> about what I'd do if I knew when my demise was certain....well, it's here, but
> there is no pleasure. Irrespective of self-induced pity, though, I know that
> there are those of you who need help much more than I. So, perhaps I can be a
> good listener for those of you who may need to just "talk." My ears are still
> working !! ( ; ) Send me E-mail if I can help........
>
> Very, Very Sincerely,
>
> Howard Collins
> [log in to unmask]
>
