Friend Diagnosed - Help Please!

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babyct

New member
Joined
May 5, 2010
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Reason
Friend was DX
Country
CA
State
alberta
City
edmonton
My dear friend has just been diagnosed and we are so scared and in shock. He has shown symptoms gradually for a year and now seems to be progressing quickly. He is beginning to choke on food and they are already talking about a shunt in the stomach to help him with feeding. (and they only diagnosed him last week!) I am at such a loss. I want to comfort him and his wife who is my best friend. Please tell me with no holds barred what I could expect with this disease and what I can do to comfort him. I know thats a tall order but I feel desperate. Thank you in advance!
 
babyct, Welcome to the forum and I am so sorry that this is happening to your friend. I am thinking that he has bulbar onset if he is choking of food and they are talking a PEG feeding tube. How is his speech? Was he diagnosed at the U of A ALS clinic? That is where I go every three months.

I was diagnosed with bulbar ALS in January of 2008 and now cannot speak or eat or drink so my advice is that he should take whatever help that he can get as soon as possible. A speech device will help him communicate and a feeding tube will help him maintain his energy.

There is no way of knowing exactly what his future will be because we are all treated so differently by the beast but what I can say is that he is in good hands with all of the dedicated and caring people at the clinic.
 
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BarryG. That sounds like what my husband has, his speech gets thicker and thicker. A few months ago, he had to wear a catheter for two weeks. He was never more miserable. He recently had prostate surgery and had to wear it again for a week. He hated it hence mentioning tube is enough for him to say no.

I think of you often, cannot speak or eat or drink. It was something I found and find so unimaginable. You, Irismarie, Rose and others help me so much overcoming fear of that for my husband. Thank you.


ghii
 
Babyct - I am so sorry to hear of your friend's diagnosis. My husband was diagnosed last wk and is failing rapidly. I am still learning also about what to expect from this disease, so I am no help there. However, I think you are a wonderful friend to be here at this site doing all you can to help the couple who are your friends. That is a great gift of yourself, your time and your love for them. God bless you and your friends. Mary
 
As the disease progresses, your friends will need help with lots of things -- errands, food, housework, etc........your friend's wife will need to get out and will need someone to stay with her husband when she goes (if the disease affects his legs, arms, etc.)............Meals are a great help, and shopping ................if it gets to the point where they cannot get out much, organize a Friday or Saturday night gathering of friends at their house and bring the snacks and drinks, and get others to help......making them still feel part of "normal" things.......and encourage others to visit and help too!..........all of these things will be so helpful.............you are a good friend and they are lucky to have you around..........
 
Thank you guys so much for the advice. I truly appreciate you taking the time to respond.
 
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