Patrick.Tze@hnews.fidonet.org (Patrick Tze) (05/24/91)
Index Number: 15792
I wrote to you some time back (15 Apr) commenting on a message
which was pretty encouraging. Just in case the message was lost I am
writing to you again.
It is good to know that I am not alone. I's am a 35 years old ALS
patient with 4 years history and would like to share my emotional and
physical problems with other ALS pateint. I can't find such in Hong
Kong. I's am paralysed from neck down, can hardly eat, drink and rely
mainly on tube feeding and can't talk.
Emotionally I's am deressed and lonely like all ALS victim. More so
as we do not have ALS support group here.
Physically 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 help up by
hand. This causes great stress to my back and spasm in the leg
whenever I tried to raise my head. I also collect alot of thick sputum
in my mouth and throst and choke easily and need suction often.
These are just some of the many problems I'm faced with and I wonder
if someoner shar the same esperience and would like to know how you
cope with it.
I welcome anyone to reply and to chat here. Pretty disppointing as I
have been for a month for a reply from someone - DESPERADO!!!!!
Thanks.. for reading.. and hoep to hear from you sonn.
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!Patrick.Tze
Internet: Patrick.Tze@hnews.fidonet.orgNadine.Thomas@p1.f7.n300.z1.fidonet.org (Nadine Thomas) (05/31/91)
Index Number: 15888
Hello Patrick!
I am sorry you have not received any answers from your previous message.
Even though I do not have ALS I wanted to let you know that your post is being
received in Tucson Arizona USA. Arizona is one state east of California.
What I find most interesting is that my neighbor told me today that
there has been a breakthrough in finding the cause of ALS - it
seems that there IS a genetic cause and the researchers seem to
have found the gene that causes it. I did not hear it myself but
she is pretty reliable. Perhaps someone else on here has hear the
same thing and can talk about it some more.
Please, keep posting to us and I know that more people will answer you.
Nadine
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Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!300!7.1!Nadine.Thomas
Internet: Nadine.Thomas@p1.f7.n300.z1.fidonet.org