In 2009 Annette noticed she was tripping occasionally as she worked her shift as a nurse in a Florida hospital. A few months later, she noticed she had trouble raising her foot as she jogged along the beach. As a nurse, she could rationalize the muscle weakness to a herniated disc from years before.
Then her voice started to change, too. Her patients picked up on that first.
“As I was working with patients, I could see, at first they thought I had an accent,” Annette said. “Then I could tell it was getting a little bit more difficult to form words. I decided, even as a nurse, something must be going on.”
Her family doctor urged her to see a neurologist. Early tests indicated ALS, but her friends urged her to go to Mayo Clinic, for a second opinion… “Sure enough, it was confirmed,” she said. She and her ex-husband, a physician, have two adult children, and three grandchildren.
Early on Annette struggled to cope with her growing infirmities. The former ballerina and snow skier had to wear an ankle brace and use a cane. As her disease progressed she needed a walker and for longer distances she relied on a wheelchair.
Her disease has progressed to the point where she can no longer move except for a small movement of her left index finger. She is unable to move her arms, her legs or her head. She can’t scratch her own nose or even ask someone to do it for her.
Annette managed to obtain an eye tracker and computer so she can communicate with her family, friends and the nurses taking care of her. Annette is fully aware and her mind is clear. She just can’t talk or express herself. Imagine how frustrating that is for her and the people she is trying to talk to. She is improving skills with her eye tracker and can type approximately 2 words per minute.
She needs an electric powered lift so she can be moved from the bed without fear of being dropped. Her van has a lift that is failing and very much in need of repair. The Van is her only means of transportation to and from her doctor. Her nurse caregiver takes her out in the van to go shopping or to the park to enjoy the air and sunshine. She needs this van just to feel a part of normal life.
Trips to the store, the Park or the movies are becoming fewer as the wheel chair and car lift are getting old and starting to fail. We fear that at any time the lift could fail and leave Annette and her caregiver stranded while on an outing.
Annette can feel every wrinkle in the sheets on her bed but is unable move to make herself more comfortable. She has to wait until someone notices her discomfort and asks her “yes/no” questions until the offending spot is found.
Annette and her family have spent nearly everything on home care professionals and equipment to make her life bearable. This disease has robbed her of the ability to move and to speak. But most of all it robs her of her dignity. Now she is in need of financial help to keep the home she loves and stay in the place where she feels safe. Where she has the comfort of her friends and family. This disease has made Annette a prisoner in her own body and makes her feel so all alone.
Annette has a kind Heart and has been proactive in ALS research. She has done many clinical trials to help find a cure. She has helped raise money for the ALS Association. Annette has been a nurse for 33 years and loved helping others. She has received multiple awards for being a caring and compassionate nurse over the years. Annette doesn’t think about the things she use to do but is grateful for the things she can still do. Annette has willed any moneys left over after she passes shall go to ALS Research and HOSPICE.
Please help her stay out of a nursing facility and spend her final time at home. She needs at least $20,000 per month to minimally pay for the care she needs. Please contribute anything you can and pass this message on to all your friends.
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