ALS

[captain queeg]

I have a brother with advanced ALS. It took awhile to get diagnosed but I’d say it’s been about 5 years since he was officially diagnosed. At that time he was weak and had trouble breathing. Now he’s in an electric wheelchair and uses a ventilator. He can still talk and eat and just enough in his fingers he can barely run his joy stick for the wheelchair.

He was on hospice a couple years ago but apparently the disease wasn’t progressing fast enough and after 8 months they kicked him off. I’d heard there’s about a 6 month time limit on hospice. I’ve been giving him pot extract capsules for a couple years now. He and my sister theorize that has helped him slow the progression. Also helps with his mood which is essential for someone who has to totally live in their head.

He keeps an amazingly good attitude most of the time. If it was me I’d have moved to one of the states with assisted suicide along time ago. But he seems to be living more and more in a fantasy world. That’s good for him in the situation but hard on his caregivers. My sister said she’d read that mental deterioration is commen in about half of ALS patients. Just wondering if others who have someone suffering from ALS have noticed mental symptoms?

[captain queeg]

1. I was surfing and looking for any new ALS group

If there is one already established please let me know/send a link.

I reread what I’d posted back in February. He really isn’t much worse off now except he can’t really control his electric wheel chair. That’s a pretty big deal for him because it limits his ability to move around. I guess he’s going in this Friday for one of his periodic assessments. Like I say he’s not able to use the joy stick very effectively now but other than that I don’t see much difference.

I went back and visited in October along with a couple sisters. The one sister has gone back and stayed with him a couple weeks at a time. I know it’s very hard for anyone and in a way probably worse for family members because he gets real impatient and can be nasty.

Though Ive visited at least once a year I haven’t taken on his caregiver duties which are immense. I really can’t do a lot of the needed stuff because of my back issues and I’m not going to jeopardize my back for him. I can do the light duty things but last summer took him out in his van a couple times and really hurt my back. Fortunately it bounced back but makes me very aware of my limitations. I’m really in a position where I could go there for awhile. Retired now and have an adequate income for my lifestyle. I kind of feel guilty about not helping out more. One thing he always says is that he needs someone to stay there in his apartment o ernight just in case of an emergency. I’d be willing to do that but know it would very quickly lead to him wanting me to do more and more. When you are the only one there it’s pretty hard to say it’s time to go. Last time I was there the situation devolved into just that. Finally we got him into respite care (it’s a limited time place, really meant to give caregivers a break, 5 day maximum stay. Anyways, just hoping to find others who have ended up caring for an ALS patient.