Tag Archives: #ALSACCOCIATION-MidAmerica

Bryan’s Big 50…Something to Really Celebrate

 

 

 

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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Can you choose to be Happy?

Happiness is that feeling that comes over you when you know life is good and you can’t help but smile. … Happiness is a sense of well-being, joy, or contentment. When people are successful, or safe, or lucky, they feel happiness.

A few months ago, I was caught off-guard when a prospective client asked me a question soon after I answered the phone. “Are you always happy or is just because of the  sales business you’re in?” The more I thought about it the more insulted I became. ( I know that was not his intention but it really got to  me.) First of all, I am in a service profession. I do sell things but I have never thought of myself as in a  sales business. I did respond by email. My first line was” I am happy; I choose to be happy.”

If you know much about my life circumstances, you might also question my reasoning.(Cliff Notes)

Reasons not to be happy.

  • Our 49 year old son has been living with ALS for over 15 years. He has no use of his hands and arms so we are those for him. He walks with a walker. He eats with our help. His voice is starting slur and we know his health is declining. ALS is always fatal There is no cure or even treatment.
  • My 94 year old Mother shares a home with us. Her health is declining.
  • My husband, Jim recently started dialysis 3 times a week and is doing chemo 1 day a week.
  • I work to help pay for the home aides that help us.

All the responsibilities of home fall on me.

Reasons to be Happy

  • Our 49 year old son has been living with ALS for over 15 years! ( most ALS victims only live 2-5 years after diagnosis, if that long) I am honored to be his arms and hands and that he still has so many capabilities that others with this disease lack. He can walk with a walker! He is not yet confined to a wheelchair. It is my pleasure to help him eat a full meal every evening at family dinner. No feeding tube. His voice is starting to slur but he has a wonderful laugh and a  writers sense of humor.( He was a creative writing professor.)
  • How fortunate am I to have my best friend, My 94 year old mother right in the next room when I need to share a funny story about my day or watch a girly net flick series or to hang out on the deck and read a book. She shares our  dinner hour every evening  with Jim , Bryan and I. During the Covid shut down I knew she  was safe and happy. That is a true blessing!
  • With Jim it is harder to be happy. I am so stressed about his health. We have been married nearly 54 years. He has been my only love. All his life he has been a happy, people-loving family man. He is trying so hard to stay alive with treatments that are taking every ounce of his energy and personality. I need to be his happiness and to find some joy in the day to share with him.

It takes a village is so true. God has filled my village with angels. Almost two years ago, when I knew that Jim could no longer help me with Bryan’s care, Kim at #ALS Association -mid America, told me about Hospice care for ALS patients (PALS). Care givers are CALS. Because it is a fatal disease with no proven treatment, the PAL can go on the program at any time after diagnosis. We chose to sign up and Bryan and I are so happy that we did. An RN Sara comes one a week ( she will come more as needed) to do a check up, access his needs and order meds or equipment at no cost to us. Katie comes twice a week to help him shower. I am not alone in making decisions about his health and this takes such an emotional weight off my shoulders.

Shortly after things started to open up after covid, I knew that I needed to get out of my home office a bit and work downtown more. A friend recommend Shelly and she in turn Franci.  These two angels are in our home from about noon to four 6 days a week. They are licensed caregivers and give love and care to my family when I am not here. There has been a noticeable positive change in Bryan, Dot and Jim since our home is filled with this positive energy. I get to do work I enjoy with people I love to be with and when I come home in the late afternoon, I get to be the mother, daughter and wife that I need to be with a good and happy attitude to take care of their needs  and enjoy them for the evening.

I am not a Pollyanna, I have days that I don’t want to get out of bed….and sometimes when the ladies are here, I do stay in bed. I shed my share of tears usually in my therapists office or with a friend over a glass of wine. Life does go on. As I write this, our garage lift stopped working. The refrigerator  seems to be on the blink and our grass may have army worms.  This may be the time to call all those people who say “let me know if I can do anything! ”