Hello,
Sorry I've been away from the forum for a long time. Two teenagers, one baby, and full time care of my dad (shared with my mom) was tough.. And then... We decided to move from the USA to Finland. It was my husband's idea actually... He dragged us in June 2018 because he thought we could...
I am a new member to this forum. I was diagnosed with a motor Neurone disease in July 2016 after complaining of weakness in my legs and arms that commenced in 2012. On top of that, I was stricken with Guillain-Barré syndrome in September 2016.
After 9 months of hospitals, rehab facilities and...
Hi everyone,
I had the contractor come out to give me a bid on remodeling my bathroom to make it wheelchair accessible. Not surprisingly, it is very costly.
I live alone and am processing all my options. I've lived in my house for 21 years and would really like to stay here. Right now, I'm...
16 minutes ago
My dad has been suffering from ALS the last 2 years. He is now confined to a hospital bed at home. He is on a Trilogy non-invasive ventilator, needs to use his cough assist machine regularly, has to be fed by someone else, and has a catheter so he doesn't have to get up and...
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For $9000 a month, you could hire better private care at home. Just my 2 cents from experience. Mom's care is decent. For right now, however, we could manage better at home. Hope to get her home soon.
When I wrote my very first post about my 55 yo friend’s AFO situation a few months ago, in addition to getting information, I received some very nice “gentle reminders” that basically said to butt out—I was reminded that how the situation was handled was up to my friend and her boyfriend. But I...
Hello everyone,
I'm a 41 year old woman living with ALS. I have to say this is the hardest thing I've ever been through. I have 2 sons, ages 14 and 11, and the thought of not being here for them breaks my heart daily.
They currently live with their father in Michigan. Once I was diagnosed, I...
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In a different thread, someone mentioned that they couldn't find a long-term care facility that would take an ALS patient. Is this true? Do nursing homes refuse ALS patients? I am a pALS with no spouse or family to care for me, so eventually I will probably need in-patient care . I currently...
Holidays are especially hard now. I was diagnosed with ALS 2 years ago and all of our parents have died or gone into nursing homes in the last few years. My family isn't close and my husband's brother tends to go with his wife's side for holidays.
So that leaves me and my dear teenage son alone...
My husband passed away in June at the age of 42 after a life long fight with various diseases. We were married for 13 years. I just turned 40 and realized that all of my friends are at least seven years older than I am and most are fifteen to twenty years older than me. I only have two friends...