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  • Hello. My husband was diagnosed with bulbar palsy with onset als just over a month ago after having speech problems for a year. Please may I ask your advice on how to handle these days after the final diagnosis. He is not wanting to tell anyone, other than me. Not even our children or family. My heart breaks for him and I want to support him, but don't know what the right thing is to do. How did you handle it?
    Hi Kim - Going back to work, ugh! I'm so fortunate in that my company allows me to telecommute almost everyday. I only go in for events. Fred is now bedridden. The last time his feet hit the ground was Feb 1st. About Hospice, I think they are all a little different, but we are having a great experience. Fred has Kaiser, so that's who provides us with our Hospice.

    Neither of us wanted help. I'm controlling and he has abandonment issues :) so this was not a natural for us. But let me tell you, it's great. We haven't taken advantage of all they have to offer yet, but here is what we do have. Fred gets a massage, in his own bed, twice a month for an hour....we have a nurse come over and see that we have everything we need once a week. She orders meds and equipment that is delivered to our door within 24 hours (by the Pharmacist!). We have a social worker who would have helped us with SS disability if we hadn't already done it, and
    who signed us up to get a reduction in our energy bill. She also has a list of caregivers who have gone through their training for me when I need them. They have lists of volunteers for when you just need to run to the store. He has a big, Jamican bath lady that helps me with his bed baths 3 times a week.....I could go on. We get free meds, equipment, supplies, everything. I can't think of a single negative. Please consider the service. It freaked me out when it was suggested that we talk to them, but it's been very positive and uplifting. His nurse never fails to tell me what a wonderful job she thinks I'm doing, and what a happy life I'm able to provide for Fred. Somedays, that's all I need to turn my world right side up. Please let me know if you'd like to talk about this further. I really am a big fan, and if Fred could tell you, he'd say the same. As it is, he gives them a huge thumbs up!

    Please let me know if there is anyxthing else I can help you with. xo Shelly
    Kris - you are so very welcome about the Gait. I'm happy that it helped you, as it's really made a difference for us, too. And thanks for letting me know. Sometimes, it's all I need to turn my day around. Peace out!
    Hi kris,

    Good day. Hope you could help me out on my questions. Did your husband just had a localized twitch in his right arm when it started and not body wide twitching? How many weeks did it take for him to start feeling weak? Thanks a lot.
    Hi Kris - yes, Dave and Fred seem to on the same length of road, currently. Do you have a Gait Belt? I just heard about/got one on Amazon (I get EVERYTHING from either Amazon or Costco). It's about $38 for a super nice one, but you can get a really simple one for about $9. It's a belt you put around them if they've fallen or they are participating in risky movement (we used it yesterday because Fred HAD TO MOW THE LAWN and I just wasn't going to say No again. So he wears the belt and it has all these loops on it (7, I thing) so you can always have a grip on him. He mowed, I followed with a death grip on one loop or another, trying to stay out of his way. When he got tired and was going to fall, I had a grip on a loop and gently lowered him to the ground. When he felt better, I just hoisted him back to standing and he sat on the porch while I finished. He weighs 190 and I weigh 110. This belt enables me to do things I never thought possible!.

    I'm happy we are sharing.
    Hi Kris...........Apparently, I'm pretty long winded today (today?) so the following 3 messages should be read from the bottom, up. Please let me know if you'd like any other information. Shelly.
    So, if you feel this might be something that you are interested in, encourage a referal from your doctor. You can decline it if you don't like what you hear. Or you can go on the Program and go off it any time, and as many times as you want. What I liked, in our case with the FTD, was that I felt like I was giving Fred time to get used to all the new people before more decline. Little did I know that would be right around the corner. He's loving the idea of semi-weekly massages, and I like the idea that I can call someone anytime, about anything.

    It was the right decision for us. I hope this helps. Peace to you and yours! Shelly
    When it was suggested that we interview with Hospice, I figured they would turn us down, "for now." Nope, and I'm so glad they didn't. They are Angels from Heaven. I swear to you. I, too, was afraid that we would lose stuff. I even asked about it, as should you, if you think it's the right thing for Dave. We now have visiting our home on a weekly basis, a nurse, PT, Social Worker and Masseuse. There is a doctor we can reach 24/7. I have been brought, yes brought, everything Fred could possibly want for his comfort, from drugs to equipment. Some of the equipment isn't glamorous, but we just turn down what we might want to purchase on our own. I'm thinking a bed might come under that category. (Continued, again)....
    Hi Kris! Nothing is too private. I feel if I have information that could help anyone else, I'm more than willing to share. It's true, just a few weeks ago when Hospice was suggested, Fred was pretty darned ambulatory. He was falling now and again, but mostly through a loss of balance, not necessarily muscle weekness. Well, what a difference a day makes because now he uses a rolling walker around the house, sometimes just a shopping cart out and about, but sometimes he has to be in the Transport Chair (that's how we did Disneyland and had a WONDERFUL TIME!!!). I'm also seeing a decline in his cognition and attention span. I blame 24/7 sports on TV, but that's just me! :) .....(Continued on next message)
    Oh Kris, please, fire away with the questions! You are the first one on here (I've been here for a year) who is "like us.". Yes, he's very easy to please. Fred hasn't been able to speak at all for almost a year. In February, out of the blue, he taught himself the Sign Language alphabet, and that is his main form of communication. Now, though, his spelling is faltering, so it's more of an educated guessing game. The laughing is getting worse for us. I say worse because he does it when I am totally frustrated and fighting back tears. He doesn't mean it, but it makes the tears win.

    So, we're off to Disneyland today! He really wanted to go, and I can't deny him a thing.....never could. I'm so glad you've got a sweet man, too. I bought a manual wheelchair so Fred doesn't get too tired.

    Please ask me questions or lean on me in any way you need. I'm here for you.

    Hi Kris - I just wanted to extend a personal 'Welcome' and say I'm so sorry you're here. You sound like you're experiencing the same as I, with the double whammy of ALS/FTD. I'm wondering if you've experienced any behavioural changes in your husband. I'm only asking because many people here have stated that their loved ones changed into people they felt they didn't even know. My husband is his same, sweet, mostly cooperative self....he just can't communicate with me. But he's very focused and fixated on things, where as he used to be more flexible, maybe. Also, we are losing mobility, so that makes communication even more important.

    Just curious if you are experiencing the same. And again, we welcome you here and hope you find solice and comfort in the knowledge that there are people who really understand.

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