The ALS Association

Through it all, I have hope.

Cynthia G. Portland, Oregon

When you are given a diagnosis of ALS, you learn that the average life span from the time of diagnosis is just 2-5 years. They tell you some people beat the odds. Some people. I was diagnosed with ALS in May 2006. I’ve had a slower progressing form of the disease, but in the last year, things have really changed for me. I had been using a motorized wheelchair for several years, but I am no longer able to get on a bus and go someplace on my own. Gradually, most of my meals came through a feeding tube. My last food by mouth was last Thanksgiving. Breathing has been difficult since being diagnosed, but I had the help of a bi-pap machine to make it easier. I had lost the ability to use my arms and had limited use of my legs, but I still had my voice. I used a microphone to help amplify it, but it was there. Today, I’m living full-time on a ventilator and a trachea tube. Because of this, I can no longer speak, but I communicate with the people in my life through a computer communication device. It might sound impossible, but it allows me to form words and sentences by using my right foot and left knee. The technology is incredible, and The ALS Association helped me get exactly what I needed. With one-on-one support, they helped me learn how to use this necessary communication tool. This was a huge change for me, but also for my family. We couldn’t have gone through this change nearly as smoothly without the help and guidance from The ALS Association. By providing us with information about this new chapter of our lives, they helped us plan as best we could. With only a phone call, they loaned us necessary medical equipment. And, they’ve been a fantastic support for my family. As we took this new direction, it was less intimidating knowing that whatever we needed, it was just a phone call away. Even if all we needed was to hear a friendly voice. Through it all, I have hope. Someday soon, I hope there is no need for The ALS Association. In the meantime, I hope some of the clinical trials can smooth the road for some. A big hope is that our community continues to rally our representatives. I hope the FDA will fast-track potential treatments. As many people say, they have nothing to lose and want to leave a wonderful legacy.

 
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