IT COULD HAPPEN TO ANYONE, AND IT DID TO ME
NOTE: This letter was submitted to MDA by Richard Turbow early this summer; it was written by his mother, Miriam Turbow of Boca Raton, Fla. After his mother's death on July 15, Richard said the family would still like to share her thoughts, which give great insight into the effects of ALS.
by Miriam Turbow
Back in August 1999, we came back from a cruise. I was tired and short of breath, but I thought it could be the jet lag. That was the beginning. Ever been told there is nothing wrong by your doctor? Don't believe him.
Over one year I was going to doctors. Internist, gastroenterologist, ear, nose and throat, pain management, orthopedic, swallowing pathologist, pulmonary, cardiologist, neurologist, physiatrist, oral surgeon and rheumatologist -- they all said there was nothing wrong. In fact, one doctor told me he wished all his patients were as healthy as I was. Needless to say, I no longer go to him. I persisted and went from one to the other, about 14 of them, always hoping for something.
Finally my neurologist sent me to the University of Miami, where I was diagnosed with ALS, amyotrophic lateral sclerosis, by Dr. Walter Bradley, director of the Kessenich Family MDA/ALS Center. This was one year later in August 2000. When the doctor first told me what it was, I thought OK, now what? Then I was given literature, and more literature.
After reading what was going to happen to me, I thought, well, everyone has to die sometime. I'm not going to let this get me. I'll do what I can, ask for help when I need it and live with it. No sense crying, because that does no good. No sense feeling sorry for yourself because that does no good. Take one day at a time.
Go with me to my MDA ALS support group and see all the young people in various stages of the disease, then you can feel sorry for them. Young men with families, young women in their prime with their teen-age daughters. Feel sorry for them. At my age I've lived my life, seen my grandchildren and great-grandchildren. So I won't get to the weddings, but I went to all the graduations.
Why am I telling you all this?
Keep persisting with your doctors. Go to support groups for cancer, Alzheimer's or whatever. They're the best things, because you learn how to cope, and have your caregivers (spouse, children, relatives) go with you. They learn, too.
Be sure you get home care insurance while you have the chance. Lucky for me, we took it out about two years ago.
I know I'm going downhill. I can no longer eat solid food, so I have a feeding tube. I need a walker to walk for balance. For any distance that we must go, I use a wheelchair. At night I am hooked up to a pump that gives me my Ensure. My speech is going, and people find it difficult to understand me at times.
Eventually I won't be able to speak. My breathing is bad, and I'm on a BiPAP machine part of the day. This helps inflate my lungs, plus I'm on oxygen a good part of the day.
I'm telling you all this because ALS is not your everyday sickness. It's something I would like everyone to become aware of. The Muscular Dystrophy Association works with the ALS people and funds are given for research.
What do I do to keep busy and my mind off myself? I play cards as often as I can. I have friends who are truly friends and help me whenever they can. I never refuse their help, because I need it. I love them all. And my family, always calling, along with all my friends up north.
But the top of the list is the main caregiver, my husband, Sheldon. He now does all the cooking, makes sure I get all my medications every day. He has the brunt of it. He is the one that must go through each day with me.
Thank you, Sheldon.
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