Recent content by llacort

Hi All, One year and 2 months after my husband's diagnosis. I see a decline over the summer. He was able to drive about 4 months ago and got himself to PT. He would eat out and it would make him feel more normal. After he fell on his face, broke his nose and would up in the emergency room, he...

I'm going to crack! My husband has ALS and feel like we are treating him badly. I work full time. Granted when I get home I'm stressed. Get dinner started, do laundry, do the mail blah blah. All he is interested in is is what I haven't done. "Did you water the pots (all 15 of them). He mumbles...

My husband has a BIPAP that he uses for sleep and naps. It was suggested at his latest check up that he have an additional one so that he could use it when sitting watching tv or reading. Our insurance only covers one. I called the ALS Association's loaner closet but they don't believe they have...

Hi All, Need advice on purchasing a bidet and also about a second BIPAP. Joey had his 3 month check up yesterday. His breathing is worse. They suggested a second BIPAP in the family room. I work full time so there is no one to transport it from room to room. He can't do it himself. Any one...

It's great to hear that the BIPAP prolongs life. My husband had his 3 month check up yesterday and it was suggested that he have another BIPAP in the family room. I work full time and he can't transport it from room to room. Was anybody able to get a second BIPAP. The insurance company only...

My husband had his 3 month ALS check up yesterday. He is too embarrased to ask but I did when he was in their bathroom. I referring to toileting. He uses baby wipes after a bm but it's not good enough. The nurse suggested a bidet. I would like feedback on which models work best. He also needs...

I've been looking around the caregiver site and came across the BIPAP issue. I have no ideas about the numbers only that on the first visit to Columbia and a visit to Dr. Mitsumoto, a BIPAP was ordered immediately. My husband was diagnosed July 2010. He was so worn out before the BIPAP he lost...

How are you Miss? This is Loretta who became your friend and whose post you replied to that I sound alot like you. How's it going?

Hi my fellow supporters, I'm not good with navigating around forums, but I'm looking for some friendships and possibly finding someone in my area (Long Island New York) who knows of a good caregiver support group. I know Stoneybrook has one for PALS and their caregivers but my husband (PALS)...

It was so good to read your post. You do sound a lot like me. I would like to keep in touch with you. My husband's diagnosis was close to yours. It hit a nerve when you said the nicer you are, the more the demands. My husband said "I think you're happy when I go to sleep". There is some truth in...

Thank you all so much for your posts. Since I posted, I haven't had time to check back. Problem is I was able to check the posts at work occasionally, but the summer is very busy and when I get home, well you know how that goes. I know I NEED to keep connected to all of you. Thank you for...

Hi All, My husband was diagnosed with ALS Atypical July 9, 2010. This after a year of seeing specialist after specialist. His ALS specialist ordered a neuropsych. We had that done and the doctor suggested I join a caregiver's support group asap. I haven't been able to find one specifically for...

Hi All, I keep coming back and forth asking about vacationing. My 91 year old dad fell and he needed to go to a heart specialist so it has been very hectic. Back to the cruise question. Did anyone find one cruise line better than another. The little I've researched to date leans toward the...

I'm sorry for your trouble. When it rains it pours doesn't it. We live in New York so I would like a cruise departing from New York. We love national parks and have never been fond of Island like cruises. I thought Bermuda might be a consideration because of the English influence. Joey was...

I read on one of the post that an ALS patient said they would have taken a vacation early on after the diagnosis. What kind of vacation works best. We love national parks and have been visiting them on our later vacations. Since they involve walking and are tiring I don't know how that would...