We spent the first few years of married life completely unaware that I was even at risk of inheriting Huntington’s disease. It was a disease we knew little about because, to our knowledge, no one in the family had ever been affected.
Then, after 10 years of physical and mental health problems including balance issues, mood swings and behaviour changes, my mum Margaret was diagnosed during a long-term hospital stay.
A nurse looked at Mum when she was admitted then asked us if we had Huntington’s disease in the family. We didn’t know anything about the disease so I Googled it when we got home. We were in total disbelief, we thought, ‘there’s no way Mum has this’. But we did start to ask doctors and psychiatrists until eventually Mum had a CT scan and was tested.
When the result came back positive for Huntington’s disease, it did answer a lot of our questions about how much Mum had changed and deteriorated over time. She was an incredible woman, we all loved her very much. We took her home and I was privileged to look after her for 12 years until she passed away. That’s what Mum wanted and we wanted that for her.
Then, after we lost Mum four years ago, I decided it was time find out if I have the faulty gene too. I wanted to get in front of it before any symptoms started.
The test came back positive and we’ve talked about what that means for all of us as a family. We don’t speak about it very often and I have no symptoms, but our sons understand what might be ahead. I don’t worry about me nearly as much as I worry about Aidan and Max, but for now we’re all doing OK.
We are especially thankful to know there’s help from Scottish Huntington’s Association should we need it and we are keen to help make sure all families in the HD community are able to access specialist support.
For my husband Guy, a police officer, and our son Aidan that meant taking on a gruelling mission – the Virtual Special Forces Inverse 360 Challenge. Guy’s brother Robert Henry suggested it then Guy decided to raise money for SHA at the same time. Things spiralled from there and they reached their £200 fundraising target in 24 hours.
They had to walk 300km in 360 hours, all while carrying a 45lb backpack, and were out for at least five hours a day, finishing well ahead of schedule. It’s such a tough challenge that loads of people drop out, and Guy and Aidan were amongst the fastest finishers.
At the last count, nearly £4000 has been donated through the JustGiving page. Our friends, family and work colleagues are brilliant. Guy and I are very proud of Aidan too, there were days when the weather was horrendous and it was tough going. But he never gave in.
Carolyn Jenner, Scotland