Old 11-08-2015, 05:58 PM #16 (permalink)
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Default Re: Wondering How Others Feel Weakness

Steve has great difficulty sitting up. The pt has ordered straps for his pwc for his head and body because he has lost so much strength.Chally, I hear you. Steve showers every other day because it tires him out so much. Getting dressed is a chore. When he eats, he is exhausted from chewing and from digesting. But he isn't ready to use the peg full time yet. He has a swallow test tomorrow so we will see what it shows. His breathing is declining and he is losing his speech although he just thinks he is tired.
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Old 11-09-2015, 11:40 AM #17 (permalink)
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Default Re: Wondering How Others Feel Weakness

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Originally Posted by Texas Quilter View Post
Marty - that's sorta what my legs feel like. I can't walk very fast or very far - sometimes a block, sometimes less. Its like lifting weights and then you just can't lift one more time. Thighs feel like lead....
Dianne
In terms of walking, that is how I feel. Additionally, my gait is off. I have bilateral partial foot drop, so I'd say that's it. If I try and walk fast, it just doesn't happen. It's like my legs aren't listening to my brain's command. If I am lucky to get any tiny increase in speed, it worsens my gait. The right legs starts to swing out and the right foot starts to slap. I develop a limp.

Other than that, my weakness doesn't feel much like anything. If I were to lay flat on a bed, legs straight and tried to raise them, nothing happens. If I were to lay face down on the ground and try to push myself up like one would doing a push up, nothing happens. The muscles just don't work.

Most of the time, I don't even realize things are changing, because thankfully, I have other muscles compensating. But when those muscles weaken, that's when I notice a big change.

I tried to reach for something above me in a tight corner on the weekend. I couldn't push off on my right foot at all. I hadn't realized that I was depending on my left calf to carry the extra load until I was forced to solely use my right.

Not sure if this makes any sense. I enjoyed the thread and hearing what others had to say. It's amazing how variable the course of this disease goes between individuals yet so similar at the same time.

Cee
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Old 11-16-2015, 12:55 AM #18 (permalink)
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Default Re: Wondering How Others Feel Weakness

One study I read suspected that the fast twitch motor neurons and corresponding muscle tissue atrophy first.

This is what I have noticed. The fast twitch muscle needed for forceful handwriting and jumping have deteriorated more than the general physical strength or endurance. Buttons and snaps that demand quick grip and strength changes seem impossible. Extended repetition of a forceful fast movement will promote a muscle cramp.

I can still climb stairs or ride my bicycle ten miles, slower than the past, but the easy motion and exercise does not promote cramps if fast forced accelerated muscle movement is not demanded. Lasting fatigue is less if I keep moving for a longer period without demanding too much forced acceleration.

I feel little different than years ago until I try a move. My reflexes remain quick, just reduced in strength and dexterity. The first move that demands finger dexterity or a combination of coordinated muscle movements raises the feeling of muscle fatigue. The feeling of fatigue mellows after a warm up, but moves that tax the smallest of muscles to coordinate a motion remind me of the compensation the body and mind achieves.

The areas of advanced atrophy have little feeling. I cannot lift fingers off a table with my hands flat on the surface. Raising them above keys on a keyboard is impossible. These finger muscles feel no fatigue. I can however raise the fingers slightly if they hang off the edge of a table. It is as if the tendons have been altered or lengthened minimizing the range of motion. Unfortunately even this limited range of motion diminishes.

I expect everyone has good days and bad days, with the good days being the result of the body and mind finding compensation to achieve what was difficult on a bad day.
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Old 11-16-2015, 05:50 PM #19 (permalink)
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Default Re: Wondering How Others Feel Weakness

Sharon expereinced fqatique early and ven before her diagnosis [6/1/11] and it has persisted through the progression. Her case may have been accentuated by heart condition. Using BiPAP helps rejuvenate her, but only for short periods now. She can stay off the machine for 45 to 90 minutes. She is uses BiPAP 18-20 hours day. Sitting up extended periods fatigues her. Sharon would experience fatique and weakeness in various muscles as she used them. They are mostly [arms, legs, arms, hands] atrophied now. Throat, neck, lungs are weakening now.

Neurologist told us that many/most neurological diseases are accompanied by fatique.
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Old 11-17-2015, 03:20 PM #20 (permalink)
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Default Re: Wondering How Others Feel Weakness

I feel fatigue and weakness differently.

I often feel fatigued. I recognize that I don't have much stamina. When I am fatigued, everything seems to take more effort. The more fatigued I am, the more effort I expend to do even simple things, and the more fatigued I become. It is a vicious cycle. I work hard on being disciplined to not overdo it when I am fatigued. That is a challenge because I have a type A personality.

I rarely feel weak. I certainly am weak, and notice it as I try to do things, but when I am sitting quietly, I just don't feel weak. In those times, I feel like I should be able to take a deep breath, go on a long bike ride or go on a hike to one of my favorite places. Of course, I actually am weak, so am unable to do those things.

Though I don't feel weak, I have many signs of weakness, such as dropping things, inability to walk far, difficulty swallowing, etc.

I feel very blessed that I still have the strength to do many things I enjoy.

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Old 11-17-2015, 04:27 PM #21 (permalink)
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Default Re: Wondering How Others Feel Weakness

I have a story about perceived weakness... Yesterday I pulled the corvette out for a last cruise before I put it to bed for the winter. It is like a workout for me to even get in and out of it, and I only took it out of the garage 3-4 times this summer.
Anyway.....I drove it to a small town about 30 miles away, had some lunch and was heading back to Salt Lake City. When I got off on my exit, I noticed a big 4 wheel drive pick up following me too closely. He continued to do it for about 5 miles, so I started slowing down and speeding up to loose this assclown. He finally decided to go around me to my left, and as he proceeded to pass me I gave him a middle finger salutation. Only one small problem....I could not coordinate my fingers fast enough, so he prolly thought I was waving at him. Long story shortend....my hand betrayed me, I am having weakness in my left hand as well as coordination issues.
I have be practicing all day and with work I now have a pretty good left bird finger, so I should be ready next time!
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Old 11-17-2015, 04:37 PM #22 (permalink)
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Default Re: Wondering How Others Feel Weakness

Steve your description brought so clearly back to my mind something Chris would say in his early months.

Once he got on the tractor (very difficult to get on and off even from early as it's a big step up), and headed out, he felt completely normal. He was not attempting to talk or eat, so bulbar symptoms were not apparent. He had weakness in his hands but it was fine motor skills, and his arms were weak so raising his arms up high was difficult.

But get a grip on that steering wheel, and with the tractor in low range 4WD it just chugged along at a steady pace and he felt like king of the world again. He would feel so good it would be like a slap in face when he finally came back and would have to get off the thing.

Well that is a bit like you were saying too Mark - getting in and out of the car is so difficult!

I also find this when people worry they have ALS and talk about all the stuff they 'feel'. It's just not like that - you feel so normal, until you go to do something and it simply doesn't happen. Yep you feel weak when you stare at a simple cardboard box of something and you can't open it no matter what you do, but it's the perception of looking at your hands that are refusing the work, rather than 'feeling weak'.
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Old 11-17-2015, 04:45 PM #23 (permalink)
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Default Re: Wondering How Others Feel Weakness

Mark your finger story also reminded me of how frustrated Chris was with losing speech so early - I remember the day he said to me "it doesn't even sound like me when I say f**k!"

Keep practicing so you have that finger very clear


Tillie


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Old 11-18-2015, 05:15 PM #24 (permalink)
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Mark, I know what you mean. I have a C4 vette as well and they are a bear to enter and exit but then there's the torque and handling and it makes it all worthwhile...
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Old 11-18-2015, 06:56 PM #25 (permalink)
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Default Re: Wondering How Others Feel Weakness

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Mark, I know what you mean. I have a C4 vette as well and they are a bear to enter and exit but then there's the torque and handling and it makes it all worthwhile...
Yea....I am thinking about selling it and getting a C-5, they are said to be a bunch more accessible. I would miss the performance of my C-4, I have done a lot to ramp up the horsies on it.
It's hard to get excited about anything these days.....my symptoms define me.
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Old 11-18-2015, 07:54 PM #26 (permalink)
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Default Re: Wondering How Others Feel Weakness

I had to relinquish my beloved 1987 Toyota Land Cruiser (last and best year for the FJ 60). It was at the opposite end of the power spectrum from an enhanced C4. It put out 135 horses when new and weighed about 5,000 pounds. It would go anywhere, just not fast.

We bought it new and had it for 27 years. We had dreams to eventually do a frame off restoration. However, I reached the point where I could not drive a standard, and we decided it was time to let it go.

The guy who bought it lives a few miles from where I used to work. He had taken great care of my baby and I have visitation rights

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Old 11-21-2015, 06:56 AM #27 (permalink)
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Default Re: Wondering How Others Feel Weakness

It's funny all this talk of driving. I had to give up August last year. If we drove on the wrong side of the road like you blokes, I would probably still be driving as my left side is fine (I think).

When I did drive, nobody drove my car but me...not even Wayne. I used to get a little...frustrated...if the mirror and seats etc were repositioned.

Funnily enough, I don't miss driving. Not one bit. But, Mark or Brad, driving a corvette does sound like something I could be talked into doing...

God bless, Janelle x
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Old 11-21-2015, 03:02 PM #28 (permalink)
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Default Re: Wondering How Others Feel Weakness

Mark - I've mod'd mine as well with a ported plenum and intake, over size runners and 1.6 roller rockers among other things.

And yes Janelle, you'd definitely love it! There's something about taking a corner in a car with no body roll and then punching it when you have 400+ ft/lbs of torque that's indescribable...

Steve - I feel for ya. My next project before the ALS was going to be a nice 4wd restoration.
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Old 11-21-2015, 08:38 PM #29 (permalink)
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Default Re: Wondering How Others Feel Weakness

Hello Dianne:
I am also a Texas quilter! I quilt as a home business on a Gammill Statler. Just wanted to say Hi and Welcome...sorry you are here though. God bless! ❤️❤️❤️
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