Help me raise money to find a cure for ALS!
Walk Saturday, NOVEMBER 4, 2023 would like 50 people walking with me on my team!
|Date:||Saturday, November 4, 2023|
|Team:||Ron's ALS Slayers|
Click on Team: Ron's ALS Slayers above to join my team.
Hello everyone, as most of you know I am an ALS patient that was diagnosed by Johns Hopkins in October 2016 and accepted as a diagnosis by the Veterans Administration April 2018. ALS takes away the freedom to walk, to talk, to run and dance. To laugh. To hug. To eat. To breathe. We fight to get that independence back – and help empower people to live life to the fullest. As with many ALS patients I was in the military for 27 years. The first 21 years I was an aircrew member on cargo aircraft where I logged almost 9,000 flying hours. I was exposed to many heavy metals, oils, hydraulic fluid and fuel virtually every day. I am very blessed to be a very lucky ALS patient in that the disease is progressing very slowly. Fatigue severely limits my ability to walk. I can walk extremely short distances with the use of a cane or walker, for longer walks like shopping I have to use the store’s mobility scooter, my portable wheelchair or my mobility scooter.
After retiring from the Air Force I became the City of Goose Creek Finance Director. I retired from the City in July 2017. I have a friend that lost her mother to ALS many years ago, she talked me into doing water aerobics something I have been eternally grateful for, and I am convinced that it is why I can still use my legs. Yes, I do not walk well or far, I weeble and wobble and unfortunately sometimes fall down but I can still stand and walk even if only short distances or with a walker. I do water aerobics two hours a day five days a week at a city pool. When the pool is closed for extended periods I have extreme difficulty walking until the pool reopens and I am able to exercise my legs. I am trying to convince other newly diagnosed ALS patients to start water aerobics because I believe the water is magic! It is difficult to convince someone who may not be able to walk to get into a pool full of water but if they get in they will see they can do something that they can no longer do on land and that is standup and walk.
As I said earlier the disease is progressing slowly which gives me the ability to attack ALS proactively. I am actively involved in the National ALS Association organization serving as co-chair of the Patient and Caregivers Advisory Committee. I have participated in numerous Zoom meetings discussing the numerous research studies and drug trials that are currently being conducted. Research costs are tremendously high and they are not fully funded by the government. Your donations are what makes the difference in when ALS will become a “Livable Disease.”
I attend ALS support group meetings monthly. They are very informative and it gives me the ability to talk to other patients and learn from them. It provides me the opportunity to keep them informed of the drug and research programs.
I have not become a hermit and I do not intend too! I believe that attitude is also a great healer. My father died when he was 54 years old. I am 75 years old, I have gotten to spend 21 years with my children and grandchildren that my Dad never got to do.
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