Old 12-02-2003, 10:51 PM #1 (permalink)
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I have spend the past several hours reading many of the messages from family and friends of people with ALS and feel at home. I am a registered nurse who has been working with and become great friends with a young man with ALS. He is now 30 and was diagnosed in his early 20's. He resides in the hospital and has been on a ventilator for over 4 years. Unfortunately although he has amazing emotional support from family and friends, his financial situation is difficult and has not had the option of living anywhere exept the hospital. He can move only his eyes (we use a communication board) and was able, until recently to use a computer (with EZ key).
I am in search of any type of community assistance program ie assisted living that may be able to help him live a little more of a normal life.
I am also looking for some tips regarding fundraising. He has had a fundraiser every year with proceeds going to the ALS society but in the past has not raised a whole lot of money. I have volunteered to help with organizing the event this year but an unsure exactly how to approach corporations/businesses for assistance.
I sit down to try and write a little history about this patient and don't know how to put into words all the things in his life he is missing, the little things that you can only understand if you have come to know a person with ALS.
I will leave it at that because I could go on forever, I look forward to reading more of your messages, I wish I had discovered this site long ago,
Sincerely Aimee
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Old 12-05-2003, 03:31 PM #2 (permalink)
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Hi Aimee
Welcome to the site, you do not mention where you reside but your local ALS Society may be of help to you and your friend. It is sad enough that our loved ones are trapped in their bodies let alone in a room with little or no outside connections. Please let me know more about the situation and I will try to do some research for your area for you and hopefully provide some contacts. My younger brother passed in June at age of 38, and there is a challenge to try and provide some sort of normal to their lives.

Joy
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als, assisted living, communication, diagnosed, early, family, financial, fundraiser, fundraising, hours, life, money, new member, person with als, reading, support, unsure, ventilator, young


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