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  • 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 that he has to ask the same questions every day with the same answers. I say "no, not yet". He wants his needs to take priority over everything else. He had the nerve to tell someone that I walked right over his cane when it fell on the floor. I'M GOING TO SCREAM. NO, I DIDN'T DROP WHAT I WAS DOING AND GO OVER TO THE OTHER SIDE OF THE TABLE AND PICK IT UP THAT INSTANT. IT'S NOT LIKE HE NEEDED IT TO GET UP. In about five minutes later I picked it up. He tells people, I walked right over the cane and ignored it. I'm doubting every thing I do. He wants to believe the worst about us. I'm told, I should just hug him and tell him I love him. How do you do that to someone who makes you feel like s___.
    I am going to check today to see if we still have Mom's. I will let you know and if we do I will send it to you. If you find one in the meantime please just let me know so I don't continue looking for it.
    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 able to get second BIPAP. Insurance only allows one. Also need bidet advice. Which works best?
    Hi! It's going pretty good here. My husband is getting a little crazy with the hot weather and the fact that he is a bit housebound right now. Other than that, all is well. How are things with you?
    Hi, I'm in Florida but originally from Lindenhurst LI. My family is still up there. I'm the only one who flew the coop. My husband is from Rockland County ( across the bridge) :) and we have an 11 year old daughter, Nina
    Nice meeting you.
    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 Celebrity line. Any feedback on this from anyone who has done cruises?
    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 diagnosed in July of this year. He is walking with a cane and uses a BI PAP when sleeping. He does get tired pretty fast. My dad is 91 and a possibility would be to include him. He felt recently though and has a very bad heart. I don't know that I could leave for a vacation with his state or is it better to bring him?
    I know you are new here hun, but once you make at least 10 posts to different threads you will get private messaging under your contact info and there will be a lot more room to write. Now, to message me back from here, "visitor messages" just click my blubear name and it will take you to my page so you can respond. I will do my best to try and get back to ya as soon as I can, but life right now for me is really hectic. Cruising is great! Oh I so wish I were on one right now!! Hugs, Kari
    Hi, yes, I would love to be your friend hun. So sorry you have to be here though. I have to warn ya, I am not on here as much as I used to be because now not only does my dad have ALS but my 21 year old daughter is very sick and we are in and out of hospitals and doctors all the time. I see that you are looking for advice on a cruise though. Yep, I have helped a lot of PALS with vacations etc, and I am a travel agent with over 18 years experience. I do this for no fee at all for PALS so not to worry. I need more background though. How far along is your PALS? What are the limitations? Lots of cruises to work from. Depends on what kind of things you see yourself doing. What time of year?
    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 work now. Seems like a cruise would work the best. We've never been interested in cruises in the past. Any feedback would be greatly appreciated.
    Yes the shock does eventually wear off. The length of time varies. Hope we can help.
    Hi and welcome. Saw you figured out how to post. You will find all kinds of wonderful support here. HUGS Lori
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