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ALS/ Lou Gehrig's Disease

Caring for someone with ALS has its own challenges and blessings. Come get help with ALS-related matters and be part of a community that cares about you.

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KateCarter1987 said...

5 days ago

Hello, I am 29 years old and my father has ALS. He is 59. My step mother passed away two and a half years ago from cancer and my Dad is alone. My fiance and I live around the corner from my Dad (thank god) and we go there almost every single day. We are also getting married in September and are incredibly busy. I wanted to come here for some strength as I feel incredibly guilty every time we are unable to go over. My Dad has some incredible PSW's who I am so grateful for but even they can't do all the things my Dad requires in the day because he only has 3 hours a day. Anyways, can someone give me some ideas not to feel so guilty and riddled with anxiety when I am unable to get to my Dad's one day? I feel anytime i'm not there i'm a terrible daughter even though i'm trying to balance my own life and also caring for him. Any help would be nice :( Thank you very much.

Liz G said...

19 days ago

My brother has ALS, diagnosed 2 years ago. He has a Hoyer lift but is looking for something to lift him off his wheelchair so his wife can pull his pants/shirts up. He can no longer raise up using his arms. Any suggestions would be great. The lift sling goes under his butt, not helpful while trying to put pants on.

The Taco Mom said...

16 days ago

Philip Caplan said...

21 days ago

My wife has ALS and it has been a year now I really try to do my best but it feels like I am not doing what her expectations are. I am not good at just sitting there. I have a PSW coming in four hours a day My suggestion is we get some more help to relieve the stress of me not being beside her every minute She is home full time and I am in and out as I work for myself But it is truly tough for me and I love her so much but not the best at care giving what are your thoughts

Philip Caplan said...

18 days ago

mrskess said...

14 days ago

Kristen Beckner said...

4 months ago

My ex-husband has been diagnosed with ALS, in a moderately advanced stage. He is being cared for by his wife and is getting ready to get a motorized wheelchair. My 20-year old daughter is having difficulty coping with his condition and the disease progression. I'm looking for support in the Cincinnati area. Any suggestions would be appreciated.

16 days ago

5 months ago

This illness is brutal!!! It's a trauma bearing witness! My brother has an ALS related illness. He is sinking with speed. I feel terribly sad and very helpless.

16 days ago

A.Elle said...

5 months ago

So I'm new here and sorry if this is one of those 'questions that have already been asked' situations. My brother and I live about an hour away from my parents. My mom was diagnosed around Christmas 2016 (though the signs started at least 2 years ago). Brother and I head home all the time, but my dad is losing it.

They've been married over 30 years and the love of his life is dying so I get it as much as I can. I'm not his favourite person and while I don't know why, d*mn is it the truth. So I don't know how to work with him at all.

Has anyone had a parent or loved one go off the deep end completely? What can I do to either work around him or....help him, I guess? He's disliked me for a long time, way before the diagnosis but my mom's my best friend and no matter how bad he is to me I want to help him continue to be good to her.

16 days ago

5 months ago

My dad has als and has lost the ablity to pull up his pants. I have be adjusting his pants a lot but have not been able to fix the problem. I've added extra interfacing to the sides to stiffen the pants but it hasn't worked. If anyone has any ideas please let me know. My dad has very little strength in his arms left and his legs are gradually lessening in strength.

A.Elle said...

5 months ago

5 months ago

5 months ago

My husband is angry with me for not being superwoman wife and caregiver

5 months ago

16 days ago

5 months ago

My dad has been diagnosed with ALS for about a year and a half. I found out when I had to leave for college. I go home a lot to help out but it is so hard to leave my parents alone. My brothers are much older than me and tell me I should be in clubs at school but how can I? They don't understand my college experience is different then theirs. I guess I was hoping writing here could help me vent. I just feel so guilty.

5 months ago

DeniseGruin said...

5 months ago

5 months ago

I have a friend who has recently gone into a nursing facility, recently diagnosed with ALS. His family has stepped up to caring for him and doing all the necessary things. How can I help? Phone conversations are difficult for him. He doesn't text. The facility is a day's drive away. He says he is frustrated and I think he is scared. This was a very independent person.

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