- Sex: F
- Data Quality: 2 stars
- ALS: 12 yrs
- Bi-Pap Wheelchair Feeding tube
- Bulbar: moderate
- Arms: severe
- Chest: moderate
- Legs: severe
- Female, 54 years
- torrance, CA
- Primary Condition
- First symptom
I'm Ann. I've had ALS for 11 years. I was diagnosed at age 43 on 10-31-2001.
I married my husband, Tom, in 1976. I was 18 years old. Two years later we moved to our home in Torrance CA where we raised our family and built a wonderful life.
In October 2001, at age 43, I received the terrible diagnosis of ALS. At the time, my daughter was only 12 and my son was 19. The doctor said I had 2-5 years to live. I was working full time as a health aide at an elementary school and had many hobbies including quilting. My husband was a successful tile contractor.
My disease progressed quite rapidly in the beginning. I had to quit work within 2 months since I could no longer use my hands or arms and was losing my ability to walk. My wonderful, amazing and loving husband became my sole caretaker and quit working. We sold our home in Torrance in 2005 and moved to north Torrance so that we wouldn’t have a mortgage. It was so hard to do at the time, but it turned out to be a blessing in disguise! We are so happy in our new home.
Early in my illness, my family and friends (Ann’s Angels) helped me raise money for the ALSA organization to help find a cure for ALS. I have also participated in several drug studies at UCLA. My family and I volunteered at the Jerry Lewis Muscular Dystrophy Association (MDA) telethon.
My family and friends (Ann’s Angels) organized two wonderful fundraisers for our family. Because of the money they raised we were able to purchase a handicapped accessible van. We’ll be forever grateful and blessed to have their love and support.
I have lost of many of my abilities such as, my independence, working, driving, walking, hugging my loved ones, singing, quilting, speaking clearly, and taking care of my family physically. Yet through it all, I try to remain the emotional strength for my family.
I feel blessed that I am still here after ten years. I have been lucky enough to see my daughter, Laura, graduate from High School, and go on to become a wonderful medical assistant. I have seen my son, Kenny, find a successful career in auto mechanics. But most of all I was so excited to attend my son's wedding to my beautiful daughter-in-law, Angie, in May 2009. I even danced with my son in my wheelchair! Angie brought into our family her wonderful daughter Austin age 7.
I’m looking forward as well to see other family milestones, maybe even another grandchild. Each day is a blessing and I live each one to the fullest! My spirit, faith in God, and sense of hope shines on. I am so grateful for my family, friends and to God for without them I would not make it through this journey called ALS.
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