Rebecca Hayden, diagnosed in October 2012 at age 40.
Died April 7, 2018.
In the spring of 2012, I noticed my dominant hand was always shaking. By early summer I was struggling to secure lane lines for our kid’s swim team. In July, a good friend was trying to set up an intervention because my speech sounded alcohol laced. We received an official diagnosis in October. I was 40 years old. My progression was quick; I was in a wheelchair, with limited movement, a year later.
I will never say getting ALS was a good thing, but I refuse to get lost in anger. I vowed to fight my battle with ALS with complete transparency and have done so on my Team Hayden Facebook page. The support I have received is amazing and I hope I am creating some awareness about this ugly disease. I am living with the hope that a cure will be found so my children don’t have to grow up without me.
You have my admiration and prayers. You are extraordinary. I’m Sarah’s grandmother so I know about this beast. Have a good day. please.
Rebecca , my daughter Carrey Robinson Dewey was diagnosed mid 2014 with ALS. Perhaps you have met her on the internet as she is engaged with the Moms group of ALS .Thank you for sharing your story . We teach us how to live life to the fullest, one day at a time . Please keep me in your contacts . God bless you and your family .
You are such an inspiration and quite an example of “courage”. My thoughts and prayers are with you and your family. Thanks for sharing.
Joan
Sarah is amazing and with her in this fight, a cure will be found.
I hate what ALS is doing to us. I hope I can offer a shoulder to Carey as she battles this disease.
I was diagnosed at age 40 in June of 2010.
It was funny to here you say your friends where setting up an intervention for you! I to had people thinking I was drunk. I don’t even drink. I use a tablet to speak for me and it’s funny how many people either treat me like I can’t hear at all and write their response down for me to read or they think I must be hard of hearing so they talk really loud to me. I just laugh! I mean you have to laugh with what we’re going through.
Hang in there! Keep fighting and keep laughing!
Brian