A Note About Progression

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Whitsend

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Joined
Jan 8, 2008
Messages
105
Reason
PALS
Diagnosis
01/2009
Country
US
State
NC
City
Concord
An acquaintance from clinic passed yesterday. She was diagnosed three months prior to me. When we met we were both at pretty much the same place in progression. Our disease started the same way. We were both about the same weight, although she was a few years older than me.

If you are someone who tries to measure progression based on other peoples' experience, you would conclude that I would have only three months to live (based on when were diagnosed,etc.) While physically I'm pretty much a quadriplegic, I can still eat, swallow, talk and breathe fairly well. Not to say what the next three months will bring, but I don't feel like I only have three months to go.

Therefore, everyone's progression really IS different.
 
You are absolutely correct! There is not measuring device for anyone with ALS. In God's perfect time is the only time table. Live each day as if it were your last. This applies to all of us no matter what physical condition we are experiencing. Each day is a gift. Blessings to you and Merry Christmas!

Kaye :)
 
You are right .Everyone progress different .
I started with bulbar onset 13 years ago .and l lost my limbs after seven years .my speech is worse then 13 years ago but understandable with repeating still eating carefully, breathing without bipap.
And I was told bulbar is the most aggressive .
Just don't let ALS consume you . And stay positive with lots of faith .
 
Thank you for posting. I just needed to read what you have to say on behalf of my husband! God Bless and Merry Christmas to all.
 
Everyone's progression is different. Progression for an INDIVIDUAL is very linear however just because patient A & B begin at the same starting point, for lack of a better term, it does not mean the finish line is the same for both of them.

The obvious key is your breathing. If that is good then so are you! :)
 
Patricia1: What an encouragement you are to us. Your post is sorely needed, as we have recently lost a few vital voices on here and we were/are desperate for the sustaining power from those of you who have LIVED! May you have many more years. TEDH5: you are so accurate: it is ALL about the breathing! My husband has been on BiPap since March of this year. I am eternally grateful to that little machine on his nightstand and to a respiratory doc who wrote the scrip. Thank you inventors, architects, technicians for your creativity.
 
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