Sandy raises a Cup O’ Kindness memory of his sister Helen

Sandy is supporting our Cup O’ Kindness seasonal giving campaign in memory of Helen, a beloved sister to both him and their brother David. Here’s his story:

Huntington’s disease has robbed Sandy Patience of too many close family members, including his older sister Helen. Her death earlier this year is heartbreaking for Sandy and David, and came at a time when Sandy was already adjusting to big changes in his life.

“I had just taken ill health retirement from a job that I loved, but now I feel blessed that I was able to be at Helen’s side during her final few weeks and when she died,” says Sandy, from Inverness.

“Helen, David and I grew up in a loving family but so many of my memories are linked to this disease. It has taken my mother, my gran, great aunts, numerous cousins, friends and now Helen. Seeing family members suffer, and understanding that might also be your future, is a very difficult thing to deal with.

Now Sandy, who tested positive in 2017, is determined to make the most of his retirement.

“As a railway signaller, I had to make decisions in an instant, the job is so safety critical that either I’m fit or I’m not. A cognitive test before lockdown showed that I’m a wee bit slower than I was, I’m still sharp but not sharp enough to do that high-pressure job now.

“Stopping work was the right thing to do. I have plenty to keep me busy with the Roche trial, staying fit, and spending time with my wife Laura, Kimberley, my stepchildren, and our grandchildren. And, of course, Rollo, my labradoodle and soulmate!

“I’ve really been looking after my health, and that’s going to be real focus for me moving forward. I’m getting fit and building muscles, and it’s helping my mental health too. I feel stronger than I have for years.”

Involvement in the Roche Generation-HD1 trial in Aberdeen, as one of only nine people in Scotland and 801 globally, is also giving Sandy hope for the future.

“I go to for tests and injections every eight weeks, being in such a significant trial makes me feel positive. I want to help the HD community, whether that’s taking part in a clinical trial, or raising awareness about HD and the work of Scottish Huntington’s Association,” said Sandy.

Just a few weeks before his retirement due to ill health, Sandy’s story was featured in the Network Rail staff magazine, increasing awareness about HD amongst thousands of colleagues across the UK. He’s also taken part in two BBC News features about the Roche trial and been featured in local and national newspapers.

“The feedback has been amazing, people are very supportive and interested in finding out more about Huntington’s disease,” said Sandy. “I’m ready for this new stage in my life, I feel positive and I’m busier than ever. It’s not what I’d planned but I have a wonderful family, friends and Scottish Huntington’s Association to support me in whatever comes next.”

Visit to find out how you can join Sandy and other family members supporting the appeal.

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