- Sex: F
- Data Quality: 3 stars
- ALS: 5 yrs
- Bulbar: moderate
- Arms: moderate
- Chest: none
- Legs: moderate
- Female, 69 years
- Santa Rosa, CA
- Primary Condition
- First symptom
I've been married for 46 years to John, who is my main caregiver and I also have a friend/caregiver come in 3 half days a week. We have two sons ages 40 and 36 and two grandchildren aged 7 and 4 nearby.
I retired in 2008 from the Santa Rosa Junior College Public Safety Training Center after 16 yrs. I loved my job there. I also 'retired' from an elementary school district Board of Trustees after 16 yrs.
We love the coast and spend a lot of time in that peaceful setting. I have volunteered as a seal docent during pupping season in spring and also at our community library.
We also have a little trailer which we use a lot. In Aug. 2011 we trailered 8 weeks across BC, the Yukon, Alaska and back. It was exhausting but worth it! In 2010 we traveled 8900 miles in our trailer across the U.S. and back home over nearly 2 months. This year we took a cruise through the Panama Canal ending in Ft. Lauderdale, FL. We then took a road trip through Florida, and the Gulf States, rounding out an extraordinary journey in New Orleans before flying home. Each of these excursions was a bit more challenging than the one before, but well worth the effort. We are both so glad we went and experienced new people and places. We hope to travel a bit more, even though I'm wheelchair bound.
My diagnosis was interesting. In Mar. 08 I first had a hoarse throat, which was thought to be allergies. 2 months later I had a 'lump in the throat' feeling. Tested for thyroid; negative. I was to speak at both the retirement of my boss in June and mine in July, but could barely speak and could not project my voice. I went to an ENT who said I must have GERD, so took Prilosec for 2 months during which time I began having diminished use of my hands. Multiple tests showed no reflux so I quit Prilosec and the doc. She had no interest in my hands! Almost immediately after stopping Prilosec my hands improved measureably, but not to normal. I was also taking simvastatin which I stopped in June and my swallowing improved. I have not had ANY choking problems since that time. I had started simvastatin the same month as my first ALS symptom appeared.
Finally in August 09 we took our cat to our long-time friend and vet. He heard me talk and, since his wife had succumbed to ALS, he was very concerned about me. He told us to go to Forbes Norris in San Francisco where my ALS was diagnosed. Lucky us to have an observant vet! He saved us months of going to local neuros only to eventually go to Forbes Norris!
The hardest thing I've had to give up is ice skating with my granddaughter. I skated for 25 yrs. and still have many friends at the rink.
- Profile Activity
- 11,694 Views