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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5 days 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
13 days 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.
26 days 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?
about 1 month 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.
about 1 month ago
My husband is 78yrs. old. Diagnosed with als in October. Speech badly affected and choking and coughing episodes. Did not give him medication because one of the side effects was lung problems and he already has emphesema. Have no family near so its just him and I. I try to get out as much as possible but I am discouraged and he is in denial so he does not want to know what lies ahead. I have a lot of faith but this has just knocked me down. All of our children live far away except my daughter about 75miles away comes on wkend when she can. He has so much mucous. Is this part of the disease.
An anonymous caregiver said...
2 months ago
Yesterday my husband of 50 years was diagnosed with ALS. His symptoms presently are, shortness of breathe, loss of appetite and weight,weakness in his arms and hands, and extreme fatigue.He doesn't ask any questions. I feel he doesn't fully understand the seriousness of this disease. He was right next to me when the doctor explained about the breathing issues and feeding tube. It breaks my heart to look at him. What should I do, wait until he asks questions or go over what is going to happen to him in the very near future.
3 months ago
My mother was diagnosed on October 26th. She is 68 years old. The doctor says she has had it for at least two years. It is affecting her speech, ability to swallow and her breathing. She has asked my sister and I to plan her funeral as she and my dad do not want to do it.
4 months ago
My Mom (54) was diagnosed almost 3 weeks ago.. Initially, she was very sad (to be expected) but after about 4 days her spirits seemed to slightly lift. She is continuing to work as an Administrator; a very stressful job. She has my Dad at home for support; we are very lucky that he is able to stay home with her whenever he wants and as much as he wants. The 4 of us kids are all in college or living on our own. We are a very close family and see our parents at least each weekend. It seemed like Mom was doing well emotionally up until about 2 weeks after her diagnosis then she became very depressed again (to be expected). She is not ready to talk openly about anything so we aren't bringing it up. How can I help her during the times that she is feeling extremely sad? My Dad is wonderful and lives to be by her side but I worry that he will start to feel sad as well.
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