Hello All -
This is my first post. I have not received an ALS diagnosis, but due to my Gulf War Service/Syndrome I am deathly afraid of this disease. I feel like I have been showing very early symptoms for a few years now. Many of them may attributed to my Gulf War Syndrome, many point away...
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First all I would like to thank everyone on this forum. You are all trying to help cope with this terrible disease. My husband was diagnosed last week and we are both terrified. We don't have family to help us through this ordeal. I have herniated disks and cannot lift him when the time comes. I...
There appears to be considerable confusion among patients, doctors, caregivers, and regulators about the right of ALS patients to elect who will provide their care. The rule is actually very simple: an ALS patient should have the right to elect who will provide their care—licensed or...
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Mark,
Decided to start a new thread on this. Man sorry to hear about the fall, hope you're doing better. When did you fall, what were you doing? My left ankle and calf have gone down hill a lot faster then I thought they would. Using a cane whenever I go out except when I walk the dogs. Just...
Hey all.
I've been checking out this forum over the last few months. Today I was confirmed by second opinion neuro with ALS.
I had slight left-hand weakness starting in 12/2014- it has gotten worse all over my body. I'm still mobile, but stairs and walking wear me out.
I had to stop...
We are one week home on the vent .. We didn't have a option and it's what mom wanted .. But now doesn't trust it and it causes so much anxiety .. Mom is not sleeping .. Dad is not helping ( he has a bad heart and is on disability ) I have interviewed and hired a nighttime caregiver ( I sent her...
My partner, who is 55, was diagnosed with PBP on May 1st. His speech is not yet completely slurred but he is already having problems pronouncing certain words. He is contemplating not working anymore and applying for Social Security. Yesterday he stopped by our local ALS Association chapter...
Hi all,
Well, as my title suggests, everything's really starting to catch up with me since being diagnosed with HSP last summer. For those who don't know, hereditary spastic paraplegia is a pure upper motor neuron disorder. HSP is not fatal, generally moves slowly and mostly affects the legs...
So I finally took the big step and applied for a disability retirement. For two years I've been totally focused on work/ making 30 years for a REAL retirement. Didn't make it. I've been teaching since I was 22. I think of myself as a teacher. How did everyone else find meaning in their lives...
Hello. My partner was diagnosed about three weeks ago. He went to Social Security to inquire about disability (for the future, not yet). They told him that benefits will cease if it turns out to be a misdiagnosis, which is sometimes the case. I doubt they see many people diagnosed with ALS. Yet...