The ALS Association

Amazing Network of Family and Friends Gives Us Strength

Nancy M. Huntington Station, New York

Two and a half years ago, my husband and I were taking a walk on the boardwalk at Sunken Meadow Beach when I noticed he was making a lot of noise while he was walking. I told him he need to get new sneakers because he was making a racket! As the months went on, he continued to walk with this loud slapping noise, and his gait was changing. At this point I said it was time to go to the doctor (something he truly hates to do). We started with an orthopedist, thinking it was perhaps something with his back since he always suffered from back issues. It wasn't. We were then sent on to see a neurologist, who sent us to a neuromuscular specialist, who then wanted us to go see an ALS/Muscular Dystrophy specialist in Manhattan. Our appointment was scheduled for October 31, 2012. However, on October 29, 2012 Hurricane Sandy hit, and we never made it into the city. At this point, my husband did not want to go to anymore doctors, so we started to try some more holistic approaches to his condition. He did not go back to a doctor for almost a year, and he seemed to actually be doing ok for that time. Then the his symptoms started to appear to be worsening. It was then I begged him to get back to a doctor. He finally agreed and went to the ALS clinic in Stonybrook, where the doctor looked at him for five minutes and said '"you have ALS." Those are words you never want to hear. That was almost a year ago. He has been in denial most of the time, which some times I believe has helped him stay as strong as he his. We have been living with this for almost two and half years since we noticed the way he walked on the boardwalk that day. He is still walking (with a walker), and working (from home now), but needs a lot of assistance. There are no words to describe watching the deterioration of someone who is the love of your life. You always feel like this is something that happens to other people, not you. Yet here we are. Our teenage daughters are still trying to wrap their around the fact that their father has this awful disease. It has been extremely difficult for all of us. We are so blessed with an amazing family and group of friends who have been reaching out to us, and we are not even in the worst stages of the disease. It is our family and friends that will get us through the tough times ahead. My hope for other families going through this would be to have the amazing network of friends and family that we do. I could not imagine fighting this fight without them. The ultimate hope would be to find a cure for ALS so that no one has to face this cruel disease.

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