My Brother Wes

[mybrotherwes]

Hi Everyone! I am new here and it looks like I will be visiting quite often. My brother Wes, age 56, has been suffering from the ALS symptoms for at least a year, maybe longer. He had a final MRI last week and we finally received the results yesterday. He does have ALS. He hasn't been able to talk for a year, just grunts. He cannot hold his head up at all. He constantly complains (in writing) that he is suffocating. When they check his oxygen level they say it is fine. Can anyone tell me why he feels like he is suffocating? I am thinking maybe it is from anxiety? I am worried that he really is having a hard time breathing and no one is paying attention to him. He is in a nursing home but I am seriously considering bringing him home with me and my husband. He eats very little. When he does eat it is yogurt, pudding, applesauce, etc. He prefers to just drink Ensure & Boost, but the doctor at the nursing home insists that he needs to eat food (pureed) before he can drink an Ensure or Boost. I have a lot of questions, but I have already found many answers. I have been in contact with the MDA/ALS Association. I am just waiting to hear from them. Thanks to all for any information and/or advice. I am praying for everyone that has been touched with this terrible disease. Pam

 

[CAHPAH]

Welcome, Pam. So sorry about your brother and the fact you have to be here. So young to be so horribly afflicted. My prayers are with you.

 

[mybrotherwes]

Thank you Jim. I look forward to getting all the information I can to try and at least help make my brother as comfortable as possible. This forum is truly a blessing!

 

[brooksea]

It's his diaphragm, not his lungs!

 

[mybrotherwes]

Thank you CJ for your reply. That's what I was afraid of. Since the diaphragm is a muscle it would make sense. Why can't anyone else see this? It's like nobody listens to him when he says he feels like he is suffocating. They check his oxygen level with one of those meters they put on his finger and say he is getting plenty of oxygen in his blood. What, if anything, can be done for him?

 

[brooksea]

He needs a BiPap! Y'all need to go to an ALS Clinic!

Muscular Dystrophy Association’s ALS Research Centers:
University of Arkansas for Medical Sciences
Little Rock, AR
Contact: Stacy A. Rudnicki, M.D., Director
E-Mail: [email protected]



Here is the affiliate in your area. For information about programs and services available please contact:

Arkansas Chapter
1113 West Poplar
Rogers, AR 72756
479-621-8700
866-540-7411
479-621-8701 (fax)
[email protected]
Visit our website for more information

 

[brooksea]

Not many know about the diaphragm issues, even though they are healthcare pros. But, you must get your bro to someone that a t least knows an inkling about ALS.

Thank you for caring for your brother.

 

[Pat Paine]

COMPLETELY AGREE WITH BROOKSEA. I have the same diaphragm weakness and extreme shortness of breath. The BiPap is a Godsend. Please get him to an ALS center ASAP. My prayers are with you.
Pat

 

[Al]

His O2 level can be fine. They should do an arterial blood gas test on him. I'll bet his CO2 levels are why he thinks he is suffocating.

AL.

 

[mybrotherwes]

Thanks everyone so much. I appreciate your care and concern more than you can know. It seems like all my concerns fall on deaf ears. It is so frustrating. I also have to contend with my mother who is 77 with vascular dementia who just recently fell and broke her hip 3 weeks ago and is now back in the hospital. She had hip replacement surgery, has been out of the hospital 2 weeks and was put back in the hospital yesterday. And then my 84 year old dad passed away a week ago. So it has been hectic. I did manage to get my brother to have a feeding tube placed 3 days ago and he does seem to be doing much better mentally. He wasn't eating or drinking much of anything and had lost a huge amount of weight. So I feel much better about that. At least I know he's not going to starve to death now. My next step is trying to get him a bipap machine and I will start working on that Monday. Again, thanks to everyone and I want you to know that I pray for my brother and everyone else who has this terrible disease. God Bless you all.

 

[abbas child]

You are going through so much right now. I'm so very sorry about the loss of your father. Also your mother's fall and return to the hospital (with dementia. Yikes.) Your entire family is blessed to have you. Thank you for working so hard to help your brother. I'm sure that by going with concerns like this (needing a Bipap) to the Nursing Home, you are going toe-to-toe with folks who are without a clue. It's so hard. It's hard just to explain and be understood by an objective bystander, let alone "authorities". You're in my prayers... and so is Wes!
Ann