Old 03-28-2011, 02:05 PM #1 (permalink)
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Default pals with 5 years and over

its only been 4 months since diagnosed im still real active and full of energy. my progression has taken my voice my right hand 90% gone and my left leg too and left arm gone. when in bed i can nolonger turn on my side without help . one strong limb left and i feel it starting to go too. my ? to you is, did progression stop or has it gone to a real slow pase. how have you and your family delt with the not knowing what the progression rate will be for the most part im doing ok mentaly but theres days im not.
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Old 03-29-2011, 12:25 AM #2 (permalink)
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Default Re: pals with 5 years and over

I think not knowing is the hardest part of this disease. It makes it difficult to plan ahead. I'm not sure who it is harder on, me or my husband. He has always been a live for the moment type of guy knowing that I was looking out for the future. Now that his future is limited, he really makes no plans.
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Old 03-29-2011, 09:27 AM #3 (permalink)
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Default Re: pals with 5 years and over

My motto while dealing with progression is put out the fire at hand....
Remember your local ALS center is there to help with equipment needs...
Stay strong
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Old 03-29-2011, 10:49 AM #4 (permalink)
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Default Re: pals with 5 years and over

Including the time when I had symptoms before D X, it's been over 6 years. It's been slow progression in my case, but...I have to say several things are now going at the same time. Take a day at a time, look to what you can do and simply be thankful for what you used to do. Plan for what's ahead--ramp & bathroom especially. Don't worry about how you're going to handle it mentally. Look for things to be thankful for. If you're a believer, give it up to God every day. My only regret is not getting our house adapted back when only my legs were involved.
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Old 03-29-2011, 01:50 PM #5 (permalink)
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Default Re: pals with 5 years and over

thanks all for reply
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Old 03-29-2011, 11:20 PM #6 (permalink)
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Default Re: pals with 5 years and over

My husband has had slow progression, until recently. There seems to be no rhyme or reason for this to be so. I'm hoping things will slow down. But, he seems to be in a spiral.

My husband use to tell me he could "feel" the disease when it ramped up and he could feel when it tapered to a slow march.
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Old 04-03-2011, 07:35 PM #7 (permalink)
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Default Re: pals with 5 years and over

A little slow with this response but I recently had a bout with pnumonia. Needless to say caused a great deal of stress. New drugs, new machines ect. My symptoms seemed to accelerate unbelievably fast. STRESS really is a killer. Now that I have leveled off again things are back to a more modest rate of progression. For what it is worth
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Old 04-03-2011, 10:11 PM #8 (permalink)
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Default Re: pals with 5 years and over

Progression for all of us has been in peaks and valleys. Just when you think it's time to say your goodbye's and whatever, things slow down. And my closest relative has even had times when function has improved. Her lung function goes up and down too. Quite odd.

I am kinda glad that we have the peaks and valleys.. Cause there is always hope around the corner.
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