Ellen's Story
At age five, sitting on Grandma Rose's lap, never did I hope I would be diagnosed with ALS. Life presents us with many different challenges that are not always within our control. Living with ALS presents me and my family with daily medical, emotional and financial challenges for which I need help.
My hope is to be alive for the cure. Actually my first goal was to live long enough for my children to remember me, as they were only 5 and 8 when I was diagnosed. That was almost 3 years ago!
 The most difficult thing about my personal experience with ALS was how fast I lost my ability to walk, talk, swallow and use my arms. I was in a wheelchair within a year of my diagnosis. The good news is that my breathing remains strong and continues to improve with diaphragm pacing. I am able to experience much of my day to day family life and mentally I am fully present and aware. Through adapative technology I can fully communicate which keeps me connected to the world around me.
I am in a great deal of pain from spasticity. My muscles are rigid not floppy like many ALS patients. Unfortunately this keeps me from going places as much as I’d like. I have not been able to find relief with medications as they make me too drowsy.
The weird thing about ALS is that I don’t feel sick. I am disabled like a quadriplegic that can’t talk. Because I am completely dependant on other people, I need care 14 hours a day 7 days a week, which I currently don’t have.
 I am excited to be participating in the scientific and technological breakthroughs that give me hope for a long life. I am dedicated to working with and helping to fund organizations and companies that are pioneering ALS medications and treatments. I have the benefit of a very innovative speech generation system and most recently I visited the University Hospitals of Cleveland for an experimental diaphragm pace maker that has strengthened the muscle in my diaphragm. Research indicates this should delay my respiratory decline for a couple of years! That said, we must look for help to fund the ongoing cost of my long term care so I can continue my collaborations.
There are no words to express the gratitude that my family and I feel for people all over the country who have helped raise money to pay for my care. Unfortunately, the financial burden of ALS is too much for the average family to bear alone. Not to mention the emotional and physical toll this disease leaves in its wake.
Please help me to further my hope,
Ellen
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