meri
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I saw this movie a couple of weeks ago and I loved it! I have ALS and it doesn’t bother me to watch movies about it. In fact, it normalizes my experience a little bit. I wasn’t bothered by the lack of resources shown in the film; it wasn’t part of the story line and it didn’t need to be there for the story to be effective.
(I attend an ALS clinic and get heaps of support from ALS Association). -
Nina, Do you have an adjustable height hospital bed? I have one on loan from the ALS Association. It makes it easy to get from the bed to the bedside commode. Or could you put one those raised toilet seats on a standard toilet to match the height of your power chair?
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Is anyone else experiencing the phenomenon of leaking copious amounts of urine about 30 seconds after standing up? Gravity works! I started with pads but now wear diaper briefs which work well but are difficult for me to change. I have to use a walker to get into my bathroom because my wheelchair doesn’t fit. As I am more unsteady now I had to find another solution. I now have a potty chair w arms next to my bed. I can get to it w my wheelchair and get on it in time, most of the timeline . It has saved a lot of diaper changes. The next chapter will involve a bedpan; does anyone have tips on how to manage transfers to toilet or using a bedpan while lying in bed?
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we are playing it by ear, Amanda. Watching the covid variants.Maybe May/June.
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Bravo !! Your words speak volumes.
meri
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My husband and I are talking about a road trip from MA to NC and then to CO and NM to visit family and friends. We set up our minivan to sleep in and cook also. We keep a porta potty on board so we don’t have to use public restrooms. We can get fully vaccinated in the next month. We shared the driving on past road trips, but as I don’t drive anymore we will have to pace ourselves differently. We would still socially distance, wear masks, and do takeout when we don’t feel like cooking.
Even if we change our minds and decide to “zoom visit”, it gives me so much pleasure thinking about being “on the road” again. Thinking about what to pack and how to organize everything keeps me “feelin’ free” in spite of the ever-present pandemic and ALS.