Super supporter and family member Alex Wilson is one of our champion fundraisers in this year’s My Zen Run, raising more than £3000 to help families living with Huntington’s disease. He shares his story about why he decided to get involved in the month-long challenge.
“My youngest brother Graham and I are close, we’ve always shared interests, including football and running. We did the Edinburgh marathon together in the early ‘80s for a Huntington’s disease charity, I don’t think Graham was even 18 then.
“I remember dragging him over the line at Meadowbank Stadium to finish together in front of our family. I was very proud of Graham that day, as I am very proud of him today. He’s done so much for his family and managed his joinery business for over 20 years before medically retiring in his 40s due to Huntington’s disease. He has good and bad days with the symptoms, but noticeably to all the family, Graham is funnier now than ever. He’s determined to get out and see the people he loves, and faces life with a positivity that inspires us all.
“Our Dad, Alex, had Huntington’s disease. I was 14 when I found out about HD and it was difficult to watch the disease overtake Dad. He became more reclusive in nature and had significant mental and physical health symptoms. As the oldest of four children, I felt it was my responsibility to help Mum care for my dad and my siblings. She faced extremely challenging times, working full time in social work while caring for Dad and the rest of the family. But Mum stayed strong and did an incredible job overall! Unfortunately, Dad was only 47 when he passed away.
“Now I’m the proud dad of two beautiful girls, Kate (26) and Chloe (22) and I do all I can to maintain positive health and wellbeing. I haven’t been tested for HD, I was going to have the test about five years ago but just as I received my appointment, I discovered I required a major operation to have a complete knee replacement. That was enough to deal with and I decided to have surgery and leave the test. Now I have a titanium knee, and I can run and keep fit without being in pain.
“I know how much Scottish Huntington’s Association supports Graham, his wife Lesley and their son Bruce. Having support to ensure the appropriate care is in place, and being able to talk to their HD Specialist and youth advisor, makes a huge difference.
“I took part in the My Zen Run to help more families receive that support. I set myself a challenge of running 10 miles every day, with the aim of completing 300 miles between 1st and 30th September. Sometimes I wore fancy dress for a laugh and posted videos on Facebook, and I actually managed to exceed my 300-mile target because I was having so much fun.
“The response has been great, and I’m grateful to everyone for such incredible donations to Scottish Huntington’s Association and for their encouragement. I’ve taken early retirement from my post as a survey/valuer after 40 years with the Lothian Joint Valuation Board, and the last day of My Zen Run coincided with my final day at work. So I ran by the office to wave farewell to colleagues – wearing my warrior costume and SHA t-shirt.”