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.
got the DPS October 2013 best decisioHey. Hope you're doing better did you ever get a DPS? How deep d you know it was time for a trache? I've had the DPS October Will be 2 years and haven'tneeded any other breathing apparatusn I've ever made had a stroke January 2014. Only been out of bed 5 Times in year and a half