View Full Version : Friend with ALS

08-13-2013, 11:17 AM
A friend (BJ) needs prayers for his experimental therapy starting tomorrow. He's been taking care of his blind wife for years, got diagnosed with ALS last year, has gone down hill pretty fast the last 6 months. His daughter is about worn out from caring for both, working, writing for a Christan blog site, etc. Survival time is about 2 years, I told him to prove them wrong, he said he'd give it his best. I know he will.
It's really hard for me to visit this part of CB. Lost Dad a few years back @ 93, MIL @ 92, Mom's going to be 94 this year. Her mom wrote this in '26 while at Cragmore with TB.

When I come home, my dearest ones,
When this long separation's done,
No sweater words can great my ear
That "Welcome home" from loved ones dear,
Nor greater joy could I request
Than sweet companionship and rest
Where love abides;-content alone
To be with you - when I come home.
When I come home, O Father dear,
When all my work is finished here,
Thy voice I'll hear in loving tone
Extend the greeting "Welcome home;"
And Heaven's greatest joy will be
Forever to comune with thee
And feel thy presence just;-just to come
And be with the - when I come home.
M. J. B. 1926

I guess her work wasn't done as she survived, wrote a lot, lived till 1966. And made the best peach cobbler I've ever had.

08-13-2013, 11:38 AM
M. J. B. 1926

That is beautiful. I don't know how I/we could get by in this fallen world without The Father/Son/Holy Ghost. Will be praying for BJ, his wife, daughter, and you.

08-13-2013, 11:51 PM
Popper, done.
I also have a friend with either ALS or PLS. Terrible thing.

Wayne Smith
08-14-2013, 07:18 AM
My mom died of ALS years ago. Donated her body for research, perhaps she may have helped some of the experimental work done now. Doesn't sound like much has changed, survival rate 5 years if Dx'ed early back then.

The Daughter needs help. There are companies around here that provide home based help and will provide a free assessment of the need. Families are not able to assess this objectively, all the love and desire and guilt get in the way. We try to do way too much and end up hurting all involved, including ourselves.

08-14-2013, 02:47 PM
Wayne - don't mean to pry but I assume it's like cancer, body quits working and lots of pain? He's lost ~25% body weight and muscle control in last 6 months. 16 wks of treatment that they haven't told him details. We just don't know what to expect or how we can help. We're taking them to dinner Fri, for the company. His wife has some rare eye disease, just doesn't see any light. Just trying to avoid any harmful bo boohs.

Wayne Smith
08-16-2013, 05:43 PM
ALS is a peripherial nervous system disease. The peripheral nerves die off progressively. It is usually Dx'ed when a person starts stumbling or dropping things because it usually effects the extremities first. When Mom died she could not open her eyelids. She could not talk. She had no control of any of her body. The usual cause of death is when signals stop going to some necessary organ, heart, lungs, kindeys, etc.

No one knows what causes it and, to my knowledge, how to effectively treat it.

08-16-2013, 05:58 PM
Prayers for your friend and his family.

08-17-2013, 06:53 AM
Good morning
I will also pray for BJ and family. The separations are tough.. but in Christ not eternal .
Mike in Peru

08-17-2013, 10:14 AM
I'll be praying for BJ and his family and you as well. My grandpa passed away in 2000 of ALS. I know everyday he's watching over me.

08-19-2013, 03:31 PM
Found out he is in a clinical test of a drug not previously used for als. He doesn't even know if he gets the treatment or a placebo. He ate the fish his daughter ordered for him, his wife just chatted. He said he's down to 140, his HS weight. Just had his 71st birthday.