外围体育投注

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ALS

r/ALS

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pinned by moderators
Posted by
Father w/ ALS
4 years ago
Moderator of r/ALSArchived
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4 comments
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Posted by11 months ago
Archived
Faith In Humanity Restored
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20 comments
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Posted by7 hours ago

外围体育投注Hi pALS and Caregivers - Anyone looking for a temporary/portable/packable shower for yourself or your loved one because you can't safely use a tub? I built my own for less than $200. This can work as a walk-in or roll-in. Similar models are 3-5x the price of this DIY, and bathroom remodels can be thousands of dollars. I'm happy to share the supplies I used in the comments if anyone is interested!

Here's a video and list of items to get. Sorry it's not the best production value, but feel free to share away!

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Posted by1 day ago

Very scared 30m who has perceived weakness in right hand and foot, numbness in arms/hands at night, body wide fasciculations, and postural tremors as well. Here is the flex and wrist bend that causes me concern (dent) vs. the hand when it is not flexed (muscle almost seems full to me). Clean Emgs 2 and 3 years ago along with visit to respected ALS Specialist who shrugged off my fasciculations and barely would listen to me after a physical exam.

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Posted by2 days ago
GoldPlus OneBless Up

My mom rapidly decline the past 2 weeks, and 3 days ago she started experiencing respiratory arrest. On Saturday we called our hospice company and they sent a nurse, because my mom was in terrible distress. All the nurse could do is tell us to give her morphine and Ativan as a sublingual every hour. However, my mom is barely conscious and cant hold the liquid in her mouth without chocking, so she kept waking up in terror gasping for air. This was probably the most heartbreaking moment of her entire illness. We (my dad, me, and my mom) were always under the impression that hospice would provide intravenous medication in this situation, and that we wouldn't have to go to a hospital for an issue like this. Welp, turns out we were misinformed. We had to call an ambulance for my panicking, helpless mom bc hospice refused to give her enough medication to be comfortable. Luckily, the hospital has given her enough to sedate her. Tonight we ended up changing to a different hospice company, and they told us they would be able to give her intravenous medication at home like we initially wanted. Why couldn't the other hospice nurse do this? Why the fuck would you have this policy?

外围体育投注Sorry if this was all over the place. I just hope someone can learn from our experience. We felt completely helpless and almost betrayed by the hospice company for not providing my mom the care she needs at possibly the most critical moment of her illness. Please take the time to figure out what the plan is if you or your loved one with ALS is suffering at the end.

Edit: before experiencing this event I was in favor of physician assisted suicide. Now I'm absolutely convinced it should be a human right for people with illnesses like ALS.

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Posted by2 days ago

This looks interesting.

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Posted by3 days ago

外围体育投注Hello, we are working on a project to develop to develop a communication device for individuals who are NonSpeaking and who may have a physical mobility issue that precludes use of a keyboard. We would appreciate feedback early on in our development and design process fro potential users and caregivers, to consider how we are doing...

外围体育投注Many thanks, love to hear from anyone that can express a Point-of-View upon what might be useful, what kind of communication is required, and how we can design this to meet the needs of the LS and Caregiver community,

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About Community

Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed.
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Created May 12, 2012

r/ALS Rules

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This is a support sub
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No requests for a diagnosis
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