@meri
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Susan and
Meri are now friends 1 week, 5 days ago
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Meri replied to the topic You're Not You in the forum ALS In The Media 3 months ago
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…[Read more] -
Meri replied to the topic Share your tips for dealing with embarassing "bathroom" topics in the forum Living With ALS 7 months ago
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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Meri replied to the topic Share your tips for dealing with embarassing "bathroom" topics in the forum Living With ALS 7 months ago
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 f…[Read more]
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Meri replied to the topic Looking Towards a Brighter Future in the forum Coronavirus (COVID-19) and ALS 1 year, 2 months ago
we are playing it by ear, Amanda. Watching the covid variants.Maybe May/June.
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Meri replied to the topic Thoughts and ideas in the forum ALS and Relationships 1 year, 2 months ago
Bravo !! Your words speak volumes.
meri
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Amanda and
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Meri replied to the topic Looking Towards a Brighter Future in the forum Coronavirus (COVID-19) and ALS 1 year, 2 months ago
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 any…[Read more]
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I love road trips Meri! The one you are considering sounds like a great one. Are there specific things/places you want to see/do other than visit family and friends? When are you thinking about going?
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Meri posted an update 1 year, 11 months ago
Found a link: prosetin2020.org has the latest info. Clinical trial delayed due to covid.
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Meri posted an update 1 year, 11 months ago
Does anyone have info on any clinical trials for a drug called prosetin from projectals.org at Columbia U in NY?
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Meri posted an update 1 year, 11 months ago
I’m a newbie, having noticed speech, balance, and weakness symptoms for about a year, diagnosed 4/20. I found the time zone article so spot on, as well as the comments. I too, have had to adjust how I move and happy to say I’ve gone a whole 3 weeks without a fall. I really appreciate other people’s ability to articulate their
experiences so well,…[Read more] -
Meri became a registered member 1 year, 11 months ago
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Hello Meri,
Welcome to the forum! I am one of the forum moderators, as well as a person who is also living with ALS: I was diagnosed in 2010.
If there is anything specific you would like to see discussed on the forum, feel free to post a new topic in any of our forums or jump in on an existing topic. If you have any questions, concerns, or even…[Read more]
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Hello Meri, and welcome to the ALS forum. I’m Amanda, one of the co-moderators of the forum. We are happy you have joined our online community. You will find that the ALS forum is made up of people with different associations with ALS. My family has an extensive history of ALS and we know that we have a genetic mutation in the SOD1 gene. I lost m…[Read more]
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