brother with als.....

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loretta

New member
Joined
Jun 18, 2009
Messages
8
Reason
Loved one DX
Country
US
State
AZ
good day folks....have't written in a while, first off, God's Blessings with everyone living and fighting this horrible disease day by day....to catch up...my oldest brother diagnosed over 1 yr ago, he has quickly progressed, per wife, much weaker, but still fighting. My question is this....I have been told that his muscles are getting much weaker. He is still doing his PT, but, I worry about his breathing. I know he has refused 02 at night, I don't know how he feels about other interventions. How much more can his body handle without help? With this increase weakness, I fear the end may come soon. I am so scared, I live in AZ and he in Tx...I may be 39yrs old, but, he is still my big brother. My family won't tell me much when I ask them, so now I am reaching out to my ALS Family...what should be the next step? Words of wisdom will be greatly appreciated....I do try to prepare myself, however, that is so difficult. I wish we would all wake from this horrible nightmare. My Love and prayers to everyone fighting this battle....I pray that God will give us a cure soon....very soon. I apologize for the babbling on, but, my emotions as of recent are getting the best of me. Thank you all.
 

GlenBrittle

Very helpful member
Joined
Oct 9, 2008
Messages
1,530
Reason
PALS
Diagnosis
10/2008
Country
CA
State
Ontario
If he is seeing a PT , then maybe a trip to a respiratory therapist or a pulmo , as part of his physical therapy would be acceptable.

Sometimes its how you sell the idea that helps.

I find that people sometimes put up barriers to things out of fear and mis-understanding.

If he is a fighter as you say , them give him the proper reasons to help his fight.

Glen
 

joelc

Extremely helpful member
Joined
Jul 15, 2006
Messages
2,786
Reason
PALS
Diagnosis
09/2005
Country
CA
State
BC
Is he open to a bipap or feeding tube? They are items that can make his life so much easier. O2 is not a good idea for anyone with ALS. I have an article explaining that in one of my blogs. Seeing a pulmonary doctor would be a good idea at this point.
 
Joined
Sep 30, 2009
Messages
27
Reason
Loved one DX
Country
US
State
AL
Loretta, I prayers are with you , I know you are hurting and I am so sorry. I have a brother also . I lost my mother to ALS and I was her care giver. I wouldn't have had it any other way, my mother and I shared secrets, layed by each other and watched movies, played on the internet. We got closer than we have ever been.
Your brother needs a feeding tube before his oxygen level gets so low they can't do surgery. This will help him to stay strong when he is not able to eat for himself. If he isn't going to a pulmonary doctor he needs to go. He can get his insurance company to get him a nice wheel chair and if he is up to it take him outside and do what ever he wants to do right now to uplift his spirits. He may even want to go to church or see a ball game. I don't know where he is with his ALS or what point so I hope I am not saying anything out of the way.
You may already have one, but he may be at the point now that he could use a Bi-Pap machine for night when he sleeps. Then eventually he will need it all day too. One of the most important mental things you could do for him right now is be in good spirits around him. Don't let him see you cry, or sad. Positive attitude only. Go see him as much as possible. These are just a few things I have to tell you . Oh, what ever you do please be careful on the way to see him. I remember those trips I made and sometimes I would be crying all the way home. Please keep us updated so we can pray for you. Hugs to you and your family Debra
 

loretta

New member
Joined
Jun 18, 2009
Messages
8
Reason
Loved one DX
Country
US
State
AZ
thanks to everyone for your words, i will definetly pass on the words of advice and wisdom....your words mean so much. i am very honored by your love, though we have never met and maybe will never, your compasion and courage will carry us all through this. i will keep you all posted, thank you again.
 

clare t

Member
Joined
Sep 28, 2009
Messages
29
Reason
Loved one DX
Country
uk
State
england
hi loretta my uncle has been dig als 3months ago and i feel he isnt facing up to it and now i see hes going downhill very quickly i dread when he needs feeding tubes etc as he says when his hands go thats it he will give up cus he cant have a beer lol and when we met for a couple of hours i noticed his fingers have gone in to the hands and hes slurring his words we had a big irish dance for him on fri and he was trying to dance and have fun cus i have been reading these forum i think i know what coming next and i dont think any of our family realize what ahead of then keep ur chin up and godbless
 
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