I am Helene Brooks

caring for someone living with ALS

Pennsylvania


Still, each day, he still has the ability to make us laugh.

ALS…three little letters…many do not know what it means. For us it means that the man that I have loved for 28 years has lost the use of his arms and hands, has trouble walking and communicating and has to depend on me and our teenage sons for all of his care…and we know we are lucky compared to so many others who are fighting this devastating disease. Still, each day, he still has the ability to make us laugh.

Joe was diagnosed on Valentine’s Day of 2019 after months of weakness and cramping in his left hand. The diagnosis leaves you with a sense of hopelessness and anger and then the day-to-day caring of your loved one just takes over. As a caregiver, I never feel like I am doing enough…having control no longer exists and you are completely at the hands of those hideous three letters.

Looking ahead is petrifying so we try to live one day at a time and be thankful for the little things (yesterday it was a new shower chair that meant more security for Joe!)! We continue to research potential holistic options and contact policy makers about newly introduced legislation with the hope that one day this disease will be treatable and not terminal…and pray that day will not be too late for Joe.

For now, each day we wake up, hoping for a “good” day, a “routine” day and I probably give way too many hugs but do not want to miss a single opportunity to show Joe how much I love him.

 


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