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On August 9, 2022 I was diagnosed with ALS. We first noticed symptoms in early April when the muscles in my arms started twitching. At that point, I started seeing various doctors and neurologist to find out what was going on. We were hopeful through July that it was just a benign twitching syndrome. Unfortunately, at that time I started losing strength in my grip. That’s when I was referred to the ALS specialist in Cincinnati who confirmed the diagnosis.
For those who don’t know what ALS is, there are motor neurons in the brain that send a signal to the motor neurons in the muscles telling them what to do. In people with ALS the communication between these motor neurons does not accurately happen. This results in the loss of control of your muscles. It affects everyone differently, and at different times. The most dangerous part is when the diaphragm is affected, as it controls your respiration. The typical life expectancy with someone with ALS is 3 to 6 years, however, some people like Stephen Hawking were able to live for 50 years.
At this point my respiration is still good. I am being affected in three primary areas. First is the grip strength of my hands. My fingers and wrists are extremely weak and don’t move like they should. It’s to the point where it is difficult for me to pick up a water bottle without dropping it. Second is my leg strength and stamina, which is why I am now using a walker. I just don’t have the balance or muscle control needed to stop myself from tripping without using the walker. Third is that my voice is affected in that I often sound hoarse, and I have difficulty enunciating many words or projecting my voice very loudly.
As devastating as this diagnosis is, we are trying to keep positive. We are being realistic in our expectations and are planning accordingly. My office has been remodeled into a first floor bedroom and bathroom for me. We have installed wheelchair ramps into the house for a scooter first and a wheelchair eventually when I need it.
Thank you for helping me reach my Walk to Defeat ALS fundraising goal! The Walk to Defeat ALS raises funds to support those affected by ALS and to spread awareness of the urgency to find treatments and a cure.
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