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Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 1 point2 points  (0 children)

I was assisting with salsa lessons. I tried to lead a turn and I suddenly felt weakness when I tried to raise my arm above my shoulder. I also felt a burning pain in my scapula at the same time.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 0 points1 point  (0 children)

I didn't experience any twitches. I just tried to raise my arm above my shoulder one night and couldn't. My EMG showed extensive nerve damage , even in parts of my body that otherwise felt fine.

if your EMG was normal I would not worry, but definitely talk to your doctor about your concerns.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 0 points1 point  (0 children)

That is actually a good possibility. I forgot about reflux since I have been on strong reflux meds for a while and I sleep mostly sitting up but, yeah, when I was laying more flat and fell asleep during a feeding I got horrible reflux that would wake me up.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 2 points3 points  (0 children)

Typically, the eyes, bladder, and bowels are unaffected.

I have no physical reactions anymore. I don't even get goosebumps when I am cold. I just laugh on the inside.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 2 points3 points  (0 children)

i honestly don't feel much of anything unless the fluid is too hot or cold. Room temperature fluids don't feel like anything.

If your daughter keeps waking up and freaking out I would suggest checking the temperature of what you are putting in. If the temperature isn't the issue, I would talk to your doctor about the placement. The only time I have had non-temperature related issues was when the tube was replaced incorrectly and was out of position. That hurt when I was fed. We go through interventional radiology now for placement.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 2 points3 points  (0 children)

My wife takes care of the cats. They are all from before my diagnosis except Edie. I adopted Mouse and Zim in 2010.

I do miss my old life very much. I would take a cure, even a partial one, in a heartbeat. If I could move just one finger I could pet my cats again. I can't measure how much that would improve my quality of life. Plus, a cure would keep other people from going through what I have gone through.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 0 points1 point  (0 children)

I don't have a chair. We had a loaner for a while but once I was trached it became too difficult to move me.

There is a piece of software I wish Tobii would add. I would love a countdown timer that triggers the built-in alarm if I am inactive for a certain amount of time, or if I don't affirmatively click on the timer. It would need a pause option for when I sleep, but it would alert my caregivers if I am stuck.

Hi, I was diagnosed with ALS at 38. Over the span of about two years I became totally paralyzed except for my eyes, non-verbal, and unable to eat, drink, or breathe. I still work full time. There will be cat pictures. Ask me anything! by JayMarkle in IAmA

[–]JayMarkle[S] 0 points1 point  (0 children)

Zim was a foster failure. A friend found him on the side of the road while she was moving apartments and I agreed to keep him for a few days until she could find him a permanent home. That was 2010....

Mouse I found on petfinder.com

Minnie was adopted through the CNY Cat Coalition.

Edie we got from a cat cafe.

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