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Hi friends, My husband was diagnosed with Bulbar onset ALS this June, along with FTD. Over the summer he deteriorated so quickly - from hiking and doing major home projects to shuffling, then a walker, then a wheelchair. Now he is in his final days, bed bound with only a few minutes a day...

People who say "you'll find the strength and everything will work out" have no idea. You're wise to recognize you can't do this alone, and you also can't wipe out your finances and your family while trying. I agree with others' useful suggestions here. Ask social workers, hospice, local...

With his FTD he doesn't comprehend cooperating on use of a condom cath. He just pulls it off when he's done, and it spills on the bedroom carpet. He wakes every 60-90 minutes at night to stand up and pee into a urinal. As soon as I get his pad pulled down I'd better be there with the urinal in...

Hi Zuppy, I hope you find some video support group! Meanwhile share your experiences here. You are not alone, in your need or your feelings. No matter how much you love your mother, your resentment is real and understandable. You have given up your entire life for your mother, and it's...

Good ideas. Thanks!

Hi Mighty CALS! My husband, on his swift and devastating trajectory through ALS and FTD, has suddenly become unable to hold his pee (so far it's just pee, but the other is coming surely). I bought a pack of Depends just in time yesterday, after a few accidents. Awoke this morning to puddles of...

Please know you're not the only one who has seen this come on like a freight train. My husband was diagnosed this June, and already can't talk, walk alone, eat other than PEG tube, go up/down stairs safely, or even think/communicate clearly (FTD is involved.) I think sometimes life strips...

Welcome, Crystal. You'll find a lot of wise support here. I have! My husband was diagnosed this June, and already is careening toward "late stages..." What a train ride. We all need each other, and you never know how your experiences might bring meaning to someone else. Thanks for joining.

Hi, I looked for the Facebook group you mentioned about FTD. I found one called The FTD Spouse - is that it? Not much about ALS there, but plenty about caring for someone with FTD. If there's a different one, can you tell me what to search for? Thanks, Krys

Constant adjustment seems like the theme of the ALS journey. Hopefully a bit of the anxiety was result of the anaesthesia, and has worn off a bit? Is there an occupational therapist who can help figure out a way for her to communicate basic needs? I hope you both can grieve, cry, and adjust as...