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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Kristen Beckner said...
21 days 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.
about 1 month 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.
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.
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.
2 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.
3 months ago
Please forgive me if I am off. I suddenly began slight slurring about 7 months ago with extreme farigue and some spasticity in my legs. After a multitide of doctors, blood tests and imagings I still cant get an answer. Recently I wake often to find a slight bit more degradation to my speech. I often run out of breath just speaking. My grandfather lost to ALS at age 45. I am now 49. It has been suggested it may be ALS. Tonight I literally had to dig food out of my throat that would neither come up or go down. My entire family is currently in denial of even the possibility which leaves me feeling very alone. How long does it take for a diagnosis? Im angry that if this is fact ALS the delay in diagnosis means each day is one less i have and dont know it. I was even fired from my job as an RN 2 weeks ago because od the dysarthria. I feel in limbo, like I no longer have control of any part of my life ans quite frankly Im scared. How do you deal?
3 months ago
Hello my name is Angelo I'm in my first stages of als and it's starting to depression me and I'm looking for a support group in newyork city my father died 14 years ago from the disease and it's really starting to take a toll on me mentally ill have no support from my spouse in which the support should be there is don't want to tell my mother that I was diagnosed with the disease because it will devastating to her because I lost my older brother 3 years ago so please contact me my number is [removed by moderator] or email me at [removed by moderator] thank you.
mohammed kumar said...
4 months ago
I share my desperation, as my wife was diagnosed with ALS last January. I have scoured the internet looking for some glimmer of hope, however,i found one. This is what I know about HEALTH MED LAB Clinic and the drug Nurown. The Clinic HEALTH MED LAB was founded in New York and moved to South Africa. The drug has evidently been given "fast track" status by the FDA, which means trial stages 3 ad 4 are being conducted simultaneously. I believe these stages are 18 month studies which began last spring. I have asked our neurologist about what was happening here. He told us one of his patients Who just got cured again from ALS treatment with his medication, while the cells could be collected and cultured in South Africa, they don't have to go to Austria to get them implanted. Again with positive results. He has also had patients go to China and Mexico for similar treatment, with no success.My wife neurologist should be aware of any clinical trials that are available. My wife is now strong and healthy without any atom of ALS in her blood, You can contact them for ALS Cure at MDA OR firstname.lastname@example.org
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