Recent content by dianepage

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    Need "Planning Ahead" Advice

    Hi Caregivers, My PALS died last December. We did a lot of things right and a lot of things wrong (this on the job training really sucks, doesn't it?) so I thought I would share: --We did put on a ground floor bed & bath addition, which we had planned to do once we got old and feeble but had to...
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    Good results with rolling table that fits electronic wheelchair

    Series C work table -- found the best price on bushfurniture2go
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    Got all the way to the operating room and dr. wouldn't put in PEG -- advice?

    Yes, in hindsight I would suggest that anyone who is experiencing even the beginning of swallowing difficulty push for extra appointments to monitor breathing volume. The other thing I suggest is using a peak flow meter at home to monitor between appointments. Although we started trying to...
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    Good results with rolling table that fits electronic wheelchair

    My PALS uses this rolling table to eat snugged up to the dinner table, for dining and reading in the living room, and to put his computer keyboard on when he motors to our home office. It's wide enough to get his electric wheelchair under and easily height adjustable and has a curved interior...
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    Got all the way to the operating room and dr. wouldn't put in PEG -- advice?

    Just spent a horrible morning at our ALS Center hospital. Fred got all the way to the operating room and the radiologist wouldn't do the procedure because Fred couldn't lay flat and breathe. We told everyone we could think of in advance about Fred's respiratory status and that he needs to sit...
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    Low FVC and pre-PEG scan?

    So glad to hear that things went well for you all, zoohouse! Are you going to "try out" formula or blended food before you have to? I think we will do both food-by-mouth and some supplement right away to keep Fred's weight up. It does take him a long time to eat small meals and snacks throughout...
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    Update on RIG v PEG question

    Thanks so much for the info, gosh if only we had time for a quick trip to Canada! I am glad Joel C's procedure went so well. We are going to the ALS Clinic hospital this next week for the PEG as we are running out of time to look for alternatives. Every hospital/surgeon has different protocols...
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    Update on RIG v PEG question

    After getting a big runaround for RIG at a more local hospital ("You have to have an abdominal CT scan to schedule an RIG procedure." "My husband can't breathe lying down for a CT scan for 30 minutes due to ALS. Can we meet with doc to discuss?" "You have to provide the CT results before you can...
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    Low FVC and pre-PEG scan?

    Best wishes for a quick recovery!
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    Low FVC and pre-PEG scan?

    My spouse has decided to go for the feeding tube -- his FVC dropped from 87 to 45 between May and October and ALS clinic folks said to make a quick decision. Our social worker gave us the name of an interventional radiologist. The doc requires an abdominal CT prior to the procedure, and we have...
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    Mattress advice?

    Any recommendations for firm mattress that works with hospital bed? Hate to spend on ordering one without being able to test it. Has anyone purchased a retail adjustable bed (e.g. Sleep Number) instead of a hospital bed? Your experience? Recommendations? Just got my spouse's hospital bed...
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