Recent content by ekoozmin

Leo-- Brilliant writing. Thanks for helping raise awareness through publishing your own experience. Yiou miught want to do a web search on Rob Borsellino, another journalist (from Iowa) who wrote about his fight with the disease. Unforunately, he is gone now, but his writings endure--a path...

Hi All-- Looks like a fun time had by all. I also think you look just like I pictured you. Isn't that funny how that worked out? Keep having fun! Liz

Al-- I have a deep admiration for all the things you are able to do in spite of this disease. You sound like the Everready Bunny! But, I think it's part of your success. Liz

Welocme to the board emjoi, although we're all sorry to have to be here. There are lots of us who have a parent with ALS, and each person brings a new and different story on how they and their family copes. I hope you find lots of good advice here. Liz

Hi Ruby--Hope you don't mind if I answer instead, and I hope I understand what you mean. Go to the top of the web page. See where it says Welcome ruby ben, you lasted visited, etc? Look to the right of that and you'll see underlined links. That's where you can click and get to the forum list...

Hi JMH--First, what you are doing for your Dad is wonderful. He is so fortunate to have you on his side, looking out for him. You sound like you are very proactive and don't take "no" for answer very easily. This is good, because, while there may be no cure, or ven something to slow down his...

Welcome to board Mom Nancy. I hope you find some good advice here. Even though it's been a year, perhaps eventually your sister will come around to accepting more help, or her husband will get tired and frustrated and will ask for help. She sounds like she might be depressed, and overwhelmed...

Hi Paty--My father is 76. He was diagnosed in Jan. 2005. He and my mother were married for 44 years and she died seven years ago. He remarried a younger woman who does not get along with the rest of the family. She is only minimally involved in his care (she is a real piece of work, but I...

Hi Dana-- This started with Dad many months back. After balking at the idea of wearing adult diapers, like Depends, he now wears them. He had been asking the aides to get him on and off the commode seemingly all day long, and it was wearing everyone out. I guess the sphincter muscles and...

Hi Paty--Welcome to the board. Glad you decided to post. Please don't feel too self-conscious, we all find ways to understand each other--especially when someone needs help. My father has ALS and also declined very quickly. Your husband is very lucky to have you--a caring wife, looking after...

I am so sorry to hear this about your sister and her husband. She sounds very depressed. Sounds like it is time to take action--maybe your sister doesn't know how to ask for the type of help she needs. Where does she live? Do they have an ALS Association local chapter or MDA office nearby...

Hi JMH-- Geez--these docs are so insensitive--it makes me furious! I feel your frustration. My father was diagnosed at age 74 and told the same thing. There so many options even for someone as "old" as 77. Ask your father if he has the desire to go on as long as possible--maybe he has...

Hi there Pez--Sorry about your husband, and that;s just horrible about both of your mothers. How sad for both of you to be grieving for them as well as dealing with this disease. I hate to say this, but based on your posts, it doesn't sound like you have been offered much guidance from Jimmy's...

Dear MM--I was very sorry to read that your step dad had passed away. He was quite fortunate to have such loving people around him at the end, and to be able to die peacefully, with dignity, the way he wanted it. I wish you, your mother, and your family all the best as you cope with his...

Mishmash, Al, and Kathy--Couple of things: My dad uses the BiPap 24/7, taking it off only to eat. We've tried lots of masks. I think he is using the ResMed UltraMirage (not sure if it's "2" or not, but it covers the nose and mouth). He has a long and narrow face, and neither the medium nor...