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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An anonymous caregiver said...
12 days 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.
22 days 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?
about 1 month 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...
about 1 month 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 email@example.com
2 months ago
My husband was just diagnosed in September. He is 48. His right side and speech is affected right now. He doesn't go outside unless he has to go to the doctors. Its too cold and he instantly stiffens and cant move. He is in the earlier stages of the disease. There is so much information out there that it is overwhelming. We really don't know what to do next. Any suggestions, tips would be greatly appreciated. Thank you
3 months ago
Met with the hospice people today. They explained that with my husband being a full code that would mean that if he was put on a ventilator with a trake that most probably he would not be coming back home. Why did I think that I would be qualified to take care of him like that This is the most horrible disease. I just want to be able to hear my husband tell me he loves me one more time. I miss the sound of his voice so much. My heart just continues to break. This is the bravest man I have ever met and I don't know how I am going to go on without him.
3 months ago
Hi, my mom was recently diagnosed with ALS, she is functional with loss of her hands. Her birthday is June 1 and we would like to have a surprise party with close family and friends. She is a private person and does not want this all over social media. I will let that be clear to all invited, has anyone done this? Is it a good idea?
3 months ago
My sister died of ALS over a year ago. I am having a hard time letting go because of witnessing her death. She did not want to die, but there was nothing else but nursing homes who would not take a person on a respirator and stomach tube. She never got on a permanent respirator or feeding tube. We explained that she needed to let go and let God. She was so scared, but she went peacefully and quickly once her respirator was removed. It was so difficult saying good-bye an seeing her pass from this life when she did not want to die. Has anyone experienced this happening to a loved one and,if so, how did you get over it.
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