Bryan was 33 years old when he was diagnosed with ALS. He had spent 5 years teaching in Prague and was beginning his career at Wichita State University. He had fallen a few times and noticed weakness in his hands when trying to button a shirt. The neurologist told him then what they are still telling the victims of ALS now. There is no cure and no treatment. In short go home and prepare to die within 3 years. At a follow-up clinic here in Wichita, the neurologist in charge told him to sign a DNR put in a feeding tube and get his affairs’ in order because he had about 18 months. Bryan told him “no thank you.”
Needless to say, we were devastated. There was nothing we could do! Eventually an nurse from the ALS Association visited us and gave Bryan a list of vitamins to take daily. She told him to eat as much as possible because at some point he might start loosing weight and she wanted him to have extra. She also warned him not to eat anything with MSG because his body could not process it.
She had given us HOPE in a very dark world. We banded together as a family and started to make the most of each day. No one knows how long they have and every moment is precious.
We had a large family gathering in Las Vegas with many of Bryans friends in attendance to celebrate his birthday that year. We didn’t know how many more we could celebrate with him. Our family and friends made 3 trips over the years, to an all inclusive resort near Cancun while he could still travel safely.
This was our first family trip to Mexico
As we celebrate the big 50, 17 years after his diagnosis, I am in awe of this man. He can still walk with the use of a walker. He still eats most everything he wants. (no feeding Tube). The use of his arms and hands is very limited so we are his hands and arms. He has learned ways to type and play games on his computer. He is as self reliant as possible. He chooses to be happy. Bry talks ( his speech is a little slurred when he is tired) and laughs with all the nurses and aides that visit ( that is a story for another post) .
I want to make a point that this is not the norm for most ALS victims and their families. Their lives are ripped apart and they are helpless as the disease takes more and more abilities away. We both realize that those same things are in store for us. His abilities are also slipping away, but thankfully more slowly.
He has been my rock since Jim passed in August. He helped me with all the legal and personal changes that have to be made when a spouse dies. Jim was our chef so Bryan and our wonderful family aide Franci have taken over meal planning, grocery shopping and cooking. I am spoiled.
Every Patient with ALS (PALS) is totally different. Bryan does have a very slow progressing type. (most other ALS patients, PALS are not as fortunate. His breathing capacity is not great and he has some very rough days with muscle spasms and cramping I know because he is very quiet on those days but he doesn’t complain. He works hard to keep from regressing.
This was a Big cerebration for all of us. Despite his early prognosis, Bryan Flores is still living with this monster disease, ALS.
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