Old 02-24-2018, 06:09 PM #16 (permalink)
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Default Re: well this is silly but...

I was at ALS Canada meetings this weekend and my wife noticed me staggering as I get out of my wheelchair. I've been noticing it myself. I'm 3 1/2 years post diagnosis with only minor mobility issues. I thought I was special. I tell people I have ALS and they say, "wow, you're doing really well". I knew this was coming, but it's still disappointing.
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Old 02-24-2018, 06:31 PM #17 (permalink)
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Default Re: well this is silly but...

Kim, I often feel like a mirror image of a dihals The ones who self test because they feel weak but can still do things. I feel fine and self test because I can’t but think I can.
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Old 02-24-2018, 08:53 PM #18 (permalink)
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Default Re: well this is silly but...

I can see myself in a number of the posts above. I watch other people move naturally around in a public place (while sitting) and wonder why I can't just get up and do the same thing. Seated I can feel almost normal. I can drive better (far better) than I can walk.

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Old 02-25-2018, 03:38 AM #19 (permalink)
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Default Re: well this is silly but...

Kristina,

I feel for you on the slow progression. I had convinced myself that I was progressing slowly. I asked the PT and she said not slowly, but I hadn’t progressed since the last time I saw her. I guess it is the relentless nature of the disease that you think not much has changed, but outsiders see a huge change.

And on a related subject to testing, I often dream that it was all a mistake or I just got better. Perhaps I am running again. I wonder if it is like learning another language and knowing you have mastered it because you dream in that language. Will I eventually dream I am disabled?
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Old 02-25-2018, 04:13 AM #20 (permalink)
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Default Re: well this is silly but...

Quote:
Originally Posted by Tedstehr View Post
... I often dream that it was all a mistake or I just got better. Perhaps I am running again. I wonder if it is like learning another language and knowing you have mastered it because you dream in that language. Will I eventually dream I am disabled?
I guess the language comparison is valid if you're forced to speak a new language and forget about your mother tongue by an evil regime. If they'd even achieve that in your dreams, they'd have won. So I hope you'll never dream that you're disabled.
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Old 02-25-2018, 06:50 AM #21 (permalink)
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Default Re: well this is silly but...

Even now after my PALS passing there are days it will just hit me "Did all of this really happen?" It all feels so surreal. I remember going for two years sort of knowing deep down that he had ALS but we never said it out loud until his official diagnosis on December 29, 2015. Then it became real. I HATE this disease.
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Old 02-25-2018, 06:52 AM #22 (permalink)
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Default Re: well this is silly but...

By the way Kristina...it is never, ever silly to hold out hope.
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Old 02-25-2018, 12:01 PM #23 (permalink)
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Default Re: well this is silly but...

Some interesting points have been raised. The idea of testing things ... Iím guilty of that. Iíve stopped testing my own reflexes. However I did test whether or or not I could still jump. I held on to a counter top for safety, and proceeded to try to jump. Nothing happened. The feet did not lift off the ground. Amusing...

Iíve not been disabled in my dreams yet. Thatís an interesting concept.
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Old 02-25-2018, 12:14 PM #24 (permalink)
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Default Re: well this is silly but...

As far as dreams go I have heard people who were prfoundly disabled say they are not disabled in their dreams. I wonder if people in early stages ever dream they are more disabled? I never have but would not be surprised.

At least you are smart enough to maintain safety Karen. When I lost quad strength and could no longer stand on one leg I was CONVINCED that it was in my head and my mind would not let me fall. It took three falls one after another before I gave up. Slow learner here!
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Old 02-25-2018, 02:10 PM #25 (permalink)
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Default Re: well this is silly but...

Yep Chris was bulbar onset and he would tell me that in his dreams he speaks normally and would be stunned when he would wake and find he was still unable to speak.
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Old 02-25-2018, 04:20 PM #26 (permalink)
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Default Re: well this is silly but...

I also find myself really impressed by the "old me." We were watching home videos from when my now 9 and 7 year olds were toddlers. When my daughter heard my voice in the video she said "who is that talking?" (I was filming and not visible), and it made me incredibly sad that she no longer recognizes my old/normal voice. But then in other videos I admiringly watched myself doing completely normal things (moving around, turning pages in a book, opening toy packaging during a birthday etc) and I felt like I was seeing something so impressive. Like, "wow look what I could do and so smoothly!"
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Old 02-25-2018, 04:35 PM #27 (permalink)
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Default Re: well this is silly but...

Kristina, ALS is maybe one of the sh###iest ways to truly appreciate what a wonderfully complicated apparatus the human body is.
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Old 02-25-2018, 06:05 PM #28 (permalink)
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Default Re: well this is silly but...

Kristina, you still seem pretty impressive, ALS and all.
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Old 02-25-2018, 06:43 PM #29 (permalink)
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Default Re: well this is silly but...

I didn't watch any of the Olympics because I knew it would make me sad. I played several competitive sports.

I walked down to the pool today. I tried very hard not to limp and keep good posture. When I got there I saw a morbidly obese woman run across the deck and jump in. There were several people in their 80s and one man 97. All of them were walking fine, going up and down the stairs like they weren't even giving it any thought. The friend I swim with is 85. I only found this out today. I thought he was around 70 but when he asked me let him take me to lunch some day, he told me his wife died two years ago and had been in a nursing home for two years before that I asked him how old he was. I thought he was joking but another lady listening in said she knew he wasn't kidding.

Lately, I've found myself being angry when some of my friends still smoke and others get fatter and fatter. I have two very dear friends, my age, who have to use walkers because they are extremely overweight. They've had hip and knee replacements just from being huge. They both developed Type 2 diabetes. Honestly, if someone told me I could completely stop progression by eating nothing but grass, I'd do it. I would do absolutely any lifestyle change to get rid of this disease. Anything.

Then I have to step back and be grateful for all the years I had free of this and for the time I have left.

I've been watching re-runs of Ally McBeal on Amazon. Yesterday I watched an episode of a doctor who went to prison for helping a man with ALS die. I don't know if Portia di Rossi or I cried harder when they took him away.
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Old 02-25-2018, 08:16 PM #30 (permalink)
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Default Re: well this is silly but...

Talked with my PALS about this thread and he told me he had a dream where he was surprisingly getting up and was able to walk although it was hard to do.
I'm posting it here for him because he's not too much of an update writer and also because his second hand is hardly doing anything for him. He took his last steps in October.
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