ALS [View all]
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?
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