Patrick.Tze@hnews.fidonet.org (Patrick Tze) (04/26/91)
Index Number: 15235
I read your messages with interest. It is good to know that I am
not alone. I'am a 35 years old AL with 4 years history and would like
yo share my emotional and physical problem with other ALS patient. I
can't find such in Hong Kong. I 'am paralysed from neck down, can
hardly eat, drink and rely mainly on tube feeding and can't talk.
Emotionally I'm depressed and lonely like all ALS victim. More so
as we do not have ALS support group here.
Physicall I have great problem with my neck. It is so weak that my
head drop always even with support of a head band and need held up by
hand. This cause great stress to my back and spasm in the leg
whenever I try to raise my head. I also collect alot of of thick
sputum in my mouth and throst and choke easy and need suction often.
These are just some of many problems I'm faced with and I wonder
if someoner share the same experience and would like to know how you
cope with it.
Hope to hear from you soon and anybody wih an interest.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Patrick.Tze
Internet: Patrick.Tze@hnews.fidonet.orgScott.Wallace@f61.n134.z1.fidonet.org (Scott Wallace) (04/26/91)
Index Number: 15248
Hi there Patrick...
A quick reply from your message of 15-Apr-91:
PT> These are just some of many problems I'm faced with and I wonder
PT> if someoner share the same experience and would like to know how you
PT> cope with it.
PT> Hope to hear from you soon and anybody wih an interest.
So good to hear from you! I have similar problems and I just
accept them as part of life. I've had ALS almost 5 years and I
still manage to eat and swallow although I can't do much with my
body.
I think that ones survivability is directly related to state of
mind and mental attitude. I look forward to each day and try to
get the most out of each day. I'm fortunate to have developed
good friends I can count on to help me out whenever I need them.
I think most ALS patients will find a great lack of support from
local ALS Societies and support groups. Why this is, I don't
know, but it's necessary for you to develop your own network.
Through my computer, I have developed a great network. So,
consider me one of your supporters.
Take care and be happy!
Ciao!
Scott
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!134!61!Scott.Wallace
Internet: Scott.Wallace@f61.n134.z1.fidonet.orgScott.Wallace@f61.n134.z1.fidonet.org (Scott Wallace) (06/05/91)
Index Number: 15994
Hi there Craig...
Great to hear from another ALS'er! Did you hear the news that
scientists have discovered the defective gene in familial ALS?
GREAT NEWS.
Over the next few months, I'll be collecting data on other ALS
ts and will be sending you a questionnaire plus names and
addresses of other ALS'ers who want to network with other
ALS'ers. In your netmail message I received, it contained no
origin line or Fidonet address for me to reply to, so I'm sending
this via ABLED echo.
Keep up the spirits and I'll talk to ya soon.
Ciao!
Scott
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!134!61!Scott.Wallace
Internet: Scott.Wallace@f61.n134.z1.fidonet.org