After 15 years of being told my wife had paranoid schizophrenia and depression, we were suddenly confronted with clear evidence she had Huntington’s. The actual circumstances of that discovery were complicated and traumatic for many members of the family, and I felt desperately guilty about allowing the situation to happen.
I found our local specialist adviser and spent nearly two hours on the telephone with her. Being able to talk to someone who understood not only my distress but also the years of uncertainty and worry that we had all been living through was a huge relief.
A short time later, she started a support group and I was one of the founding members. We have about four to six meetings and around 12 fundraising events a year. I try to attend them all. The thing that keeps me going is the relief I feel when I’m taking to people who understand the disease and the pressures it places on the whole family. It’s that ‘being understood’ feeling that’s been so crucial.
Being involved helps me to understand all the ways Huntington’s can affect people. Standing in supermarket foyers help raise awareness and it feels as if we’re giving something back in return for the support our family has received.