The ALS Association

Making the Most Out of Every Day

Patricia R. Orange Park, Florida

My story begins at the tender age of 9 years old. I began having weakness in my legs causing me to have difficulty walking and falling a lot. After many doctor visits and a two week hospital stay, I was diagnosed with Dermatomyositis, a muscle disease that affects the skin and muscles. At that time, over 40 years ago, it was a rare disease usually with a poor outcome and few treatment options. I wasn't expected to reach adulthood. Two years later, I was diagnosed with Rheumatoid Arthritis. I was put on high doses of Prednisone (really the only treatment option for Dermatomyositis at that time) to try to get my symptoms stabilized. Even with fighting two devastating diseases, I had a wonderful childhood with loving parents that tried everything to give me a good life. I was not able to play outside with other kids, so I was given a hobby of raising birds - birds being one of my biggest joys. During my teen years, my diseases went into remission. I have been blessed beyond belief. Having been sick as a child, I knew how fragile life was and have lived everyday to the fullest. I enjoyed spending time with family and traveling as much as possible on cruises to places like Alaska, Mexico, and the Panama Canal and even a two week trip to Europe. To say I have been blessed is such an understatement. I've had a near normal adult life, still with many medical issues stemming from my childhood illnesses but still so very blessed. Fast forward to age 49. I began having muscle twitches and spasms and cramping. All new symptoms that I never had before. Then the muscle weakness started, and I had a major fall in 2010 hitting my head on the concrete sidewalk. Having grown up watching the MDA Telethon every year since I was 9, I knew these were symptoms of a Motor Neuron Disease. Getting diagnosed was difficult due to my past muscle disease. It was assumed by many doctors to be Dermatomyositis active again. After seeing many neurologists and having much testing in Jacksonville, I was finally diagnosed with ALS by a wonderful doctor in Tampa, Florida that went the distance to help me. My worst fear has come true, but yet again, I have been blessed with the slower progressing form. I now see an amazing neurologist at The ALS Clinic at Mayo in Jacksonville. I'm still walking but with much difficulty and using a walker. BUT STILL WALKING. Yes my Lord and Savior has looked out for me all my life and still is. This is a horrible disease and to say I don't have some very bad days would be untrue, but with the unwavering help of my sister Martha who is always there for me and many wonderful friends, I will get through this. Keeping a positive attitude is essential to have any kind of life with ALS and also taking one day at a time to deal with all the new challenges that come up daily. Today my life has totally changed from the life I once had. I still make the most out of every day, and my focus in life is to help other people, raise awareness for ALS and promote research, as well as travel and enjoy life for as long as I can. I did my first Walk to Defeat ALS this year with my team Patty's Angels of Hope and have so far raised almost $6,000.00. I have also begun volunteering for Haven Hospice to try to give back and also continue to have a purpose in life. This new work for me has given me a new lease on life, and I have finally found my calling. I truly pray that they will find a cure for this devastating disease that takes so many vibrant lives every year. I know it is in the near future. I'm not sure it is in my future, only the Lord knows that. But I will continue his work and keep fighting for a cure as long as I have any strength left in this fragile little body of mine. We must continue to fight to make A WORLD WITHOUT ALS.

 
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