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 - 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.
Feb 21, 2009
Nov 12, 2013