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halfin

Senior member
Joined
Jun 29, 2009
Messages
540
Reason
PALS
Diagnosis
08/2009
Country
US
State
CA
City
Santa Barbara
I got bad news this morning that one of the members of our local ALS support group died yesterday.

Joe was diagnosed a month after me, in September of last year. His symptoms were very slight at first, just some hand weakness. But his speech and eating began to be affected and he started losing a lot of weight. He didn't get to an ALS clinic until May, and at our June meeting he had lost 10 or 15 pounds from the previous month. He missed our July meeting, and we were all worried.

Apparently Monday he went in to have his PEG inserted, but then the next day he started having problems. His breathing became weak and he had some confusion. His family took him to the hospital, where they put him on a breathing machine. But he did not want to stay on that, and asked to have it disconnected even though he might not be able to survive without it. Indeed his breathing was too weak and he died the next day.

This news came as a terrible shock and surprise. Joe and I were diagnosed about the same time and were going through our progression together. He was a totally sweet and kind man, much loved by his friends and family. He spent most of the last month moving in with his daughter, a strong young woman who would be his caretaker. Even his ex-wife had volunteered to have him move in and take care of him.

Joe died way too early, and I'm not really sure why. It sounds like there must have been complications from the PEG surgery. Usually those are routine but sometimes things happen I guess. I really can't believe he's gone, that I will never again see his warm smile and feel his big hug at our meetings.
 
Hal, I am very sorry for the loss of your friend. It is awful to lose friends, especially those who are suffering through the same things that we are. My condolences to you and to all of Joe's family and friends.
 
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Hal, I am very sorry to hear this. Sad, very sad!
 
Hal, I am so sorry to hear about your friend Joe. May he rest in peace. Als is a very mysterious and unpredictable disease. You would not believe the things my son was doing before he passed. He sent me shopping...made out a list, and asked me to get him a newspapre and a Truck magazine. He read his paper, and looked and read his magazine, that evening there was a sudden change, and he was gone the next day! It is sooo hard to deal with this damn disease. You take care of yourself. My condolences to Joe's family and friends, including yourself. May God bless you!

Irma
 
hal,i am sorry you lost your freind joe. may you find peace and his family. love wanda and glen xoxoxoxoxox
 
Hal, I'm sorry you lost such a good friend. My condolences go out to you and all of Joe's family and friends.

Kim
 
Hal, sorry for the loss of Joe. Condolences to you and Joe's family. It's so difficult.
 
I am so sorry for the loss of your friend Hal.
 
Hal, I'm so very sorry you have lost such a friend. Sending you a BIG hug to comfort you.
 
Hal, I am so sorry about the death of your friend. It does seem like his death was out of the ordinary - even for ALS. In that my husband just had a PEG placed on Wednesday, I have been reading about the possible complications. Although they appear to be rare from what I read, it sounds like he certainly suffered from complications. My husband and I lost a friend to ALS in February - shortly after our doctor told us he suspected ALS. Tom's death would have been difficult anyway (49 with 3 daughters under 9). It was ten times more difficult considering our circumstances. My thoughts are with you.
 
Another reason why PEG Placement should not be done as an outpatient procedure. So sorry for your loss Hal. HUGS Lori
 
I am so sorry for you loss. It is always a sad day when we lose another friend ...hugs, Linda
 
This is such sad news and so frustrating. For one thing, it seems that the medical field is haphazard and uncaring time and time again. It seems that the scenario should have been much different. Maybe he would have survived with better medical care. I know ALS takes many quickly and unexpectedly but shouldn't be like this. Rick and I send our condolences. What a nice tribute to your friend.
 
Thanks for the good thoughts everyone. Joe's funeral will be next Saturday, ironically the same day as a long-scheduled big birthday party for another member of our ALS support group. Our support group had 7 PALS at the start of the year, and since then 3 have died. That is turning out to be one of the hardest parts of having this disease, getting to know so many good people who die.
 
Hal, it is so true what you said about one of the hardest parts of having this disease is losing good friends. The same goes for this forum, I was looking at my friends list and realized that 11 of my 56 friends had either passed away themselves or had their PALS pass away. I know that it comes with the territory but it is sad just the same.
 
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