Recent content by PamB

I would like to thank all of you who have offered your support either to me or any other person who has encounted this disease by a loved one. My sister Sharon died on Feb 27 and I was there to be with her in her last moments on this earth. It was very peaceful and I am glad I was able to...

Hi all, It's been a couple of months since I have written. My sister was having a hard time breathing in Sept and she has made it through the holidays. By pure will on her part. Her daughter is taking care of her now and we have night aids and aids during the day. The hospice nurse called...

I am sorry to hear about your dad I went to take care of my sister for six months out of the last year. I left my family and went a 1000 miles away. I don't regret it but I got so burt out and got ill, and I became no help to her. So we had to hire someone to live with her. It has worked...

Thanks for your information My sister does have a bipap machine but she does not want to use it. She doesn't like anything on her face. So maybe I will go visit next week. thanks PamB

Hi, My sister has had ALS for 2 years and she is totally immobile and she recently lost her ability to make any noises. We are lucky that she has had her voice machine and is proficient at it at the present time. She is very restless at night and has to be positioned many times during the...

I took care of my sister for 6 months in this past year and when she started to slip in her chair one of the things we found to work is to take the rubber mats (, can be bought at wall mart or kmart) that stop rugs from slipping . We put them on her chairs. or under pads that were on her wheel...

Roho

Hi Liz, If you know anyone that can sew we took front hooking bra and put velcro instead of hooks also I went to a specialty store for cancer patients and they had several already made with velcro because surgery patients cant lift their arms and the velcro is easy to use and they have to have...

Dear Sara: Medicare is a nightmare at first but after you get on the system it gets a little better for a while. The same thing happened to me when we were trying to get my sister on ss they said she had to wait and then we told them that ALS don't have to wait to get on and they were "I'll...

Hi Laura: My sister had difficulty sleeping and turning. I asked the PT when she came in and she spent almost an hour in her room, I asked her to help me work this out and she did. We also ordered a jell mattress but that only seemed to put my sister in a deep hole that she couldn't get out off...

Dear Sara: I am sorry for your loss. I am sure your mom will always be watching you and I am sure she is so proud of how you took care of her and enjoyed all the everyday memories you had. May God Bless PamB

Hi, my name is PamB and I have a sister is who has ALS. I was her only care giver for the past 100 days and now she is visiting her two daughters in California. I have been visiting the site for a couple of months and now I have just gotten the time to write to all of you. You have given me...