Support for those who have lost their PALS

[grandmommyk]

I recently joined the forum and am still trying to find my way around. My husband has a slow progressing type of ALS. He has been diagnosed for over 15 years now. I am not unfamiliar with ALS and all that goes with it. However I have been very surprised at what I have already learned on here. I am wondering if there is a similar support group/forum for later on. I have a friend that I met through an MDA sponsored support group. Her husband had ALS also. He died almost 3 years ago. At first she did well. She took care of the necessary details, traveled to see family, helped with their needs, got involved in Church again, etc. Gradually though, things have gotten more and more difficult for her & she is really struggling. I was wondering if there might be an online group that could help her.

 

[abbas child]

I just did a search for "grief forum" using a search engine and found several of them. I hope you continue to come here and share. I honestly have learned so much here which the doctors I see know nothing about. The fact that so many different clinics are being seen, we have nurses who share publications from time to time (as well as non nurses), and also the incredible survivors, the caregiving spouses and children who learned everything and now can help others. I was helped just this week by a caregiver whose sister died, who works in a nursing home and knows the kind of tips that would never occur to me. I hope your husband does well and is slow progressing for a nice long time.
Ann

 

[Katie C]

Perhaps you could help her find a good grief counsellor in your area? We had five family deaths in the past year including my PALS husband. My son and I have a great counsellor who manages to put things into perspective. Sometimes it just helps to have someone say "yup... this is normal...." Also... there's no reason she can't come to this forum. I find being able to use some of what I learned "the hard way" to help others is very therapeutic.

 

[LizT]

Good advice. Was just going to say to send her our way!

 

[grandmommyk]

Thanks to all of you. I got an email from her today, and she seemed much better than she has. I did tell her about this website.

I plan on hanging around the forum. I have learned things already that have been helpful. I do think I will change my id and profile info. After reading some threads, I believe my husband may have some of the other problems mentioned on here. I don't remember the initials. Anyway he would not be appreciative of my sharing when times are a little overwhelming. So just in case he ever joins the forum, I would prefer to be incognito.

Thanks again for the welcome and your help.

 

[abbas child]

That sounds like a wise plan. I hope your friend does join also and will share.