15871 full
Sex: F
Data Quality: 2 stars
ALS: 6 yrs
Bi-Pap Wheelchair
Bulbar: none
Arms: moderate
Chest: none
Legs: moderate


Female, 58 years
Pembroke, GA

Primary condition
ALS and 3 more
First symptom
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About SParker

I was diagnosed with ALS Oct. 2008 - I was devastated - I thought my live was over.  I have 3 beautiful grandchildren - 2 boys  - age 18 months a 5 and a girl - 3 months, 3 beautiful kids - 2 girls age 23 & 25, a son 31 and a wonderful and loving husband.  I got 3 opinions and all said ALS.  The 1st neurologists told me I had 2-5 years but  the neurologists from Mayo Clinic in Jacksonville said I could live as long as 15-20 years depending on how fast the progression is.  So far my progression has been slow I think - but I plan on beating this thing with my family and God's help.

4/8/11 - went out on disability as my job was being cut to part time.  I didn't think I was ready - but found out everything happens for a reason.  It was getting harder to get dressed in the mornings and to walk down the long hall to my office.  A lady I worked with gave me a Jet3 - just needed new batteries.  Also got a lift for the back of my husband's truck & my husband built me a 66"x20' wheelchair ramp which has really helped.

10/1 I qualified for Medicare and SS disability.  My husband retired early from work so he could be home with me.  It's hard getting use to this drastic cut in pay - Frown but I'm sure we'll be fine - at least we can spend quality time together.  I'm hoping and praying that there will be a drug approved that will at least slow ALS or even stop the progression.

My last clinic visit 7/12/13, I was told I needed to be thinking about a peg in the next 3-6 months.  Said I would not qualify when my FVC was below 50.  Also thinking about the DPS.  Will know more in October.



Profile: 12,014 views
Comments: 1 update, 0 for others
Member since: Feb 21, 2009
Last Login Nov 22, 2014

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