Jenny shares the impact that the charity has had on her life and the importance of getting support.
Sometimes it can feel that my Huntington’s disease is all that I am now. However, I do have a past. The Huntington’s Disease Association has helped me believe I still have a future.
Jenny, a retired childcare owner from Milford on Sea, was unaware that Huntington’s disease was in her family until she began to display symptoms. Upon delving into her family history, Jenny was able to connect the dots. “My mother was diagnosed with frontotemporal dementia, a misdiagnosis that only became evident later. And I now know that this was Huntington’s disease,” says Jenny.
I went immediately to the Huntington’s Disease Association website to find out as much as I could. It’s a brilliant resource which I return to regularly. I rang the charity helpline, they spoke kindly and they put me in touch with Eve Payler, my local Specialist Adviser. I have been fortunate to have home visits from Eve Payler [Specialist Adviser], assisting us from the period pre-diagnosis, during our genetic counselling, and ongoing, including help with my Personal Independence Payments (PIP).
Jenny knew she had to be proactive in seeking help for herself and her husband. She says, “With the Huntington’s Disease Association’s support, I was gradually able to see for myself how Huntington’s disease was affecting me and the profound impact on my family over previous years. I have also encouraged family to seek support.”
Both Jenny and her husband have benefited from support groups. Jenny attends a gene-positive group that she set up in her area, and her husband attends a carers group. They have both made friends from these support groups. “For me, the deepest connection continues to be with other gene-positive people. At our meetings, everyone always starts with an HD Hug,” Jenny says.
They have also found support through Huntington’s disease-based therapies that have been part of the charity’s research into better mental health support for people affected by Huntington’s. Jenny took part in one of the Acceptance and Commitment Therapy courses for those who were gene-positive.
Acceptance and Commitment Therapy is tailored to Huntington’s disease, which is unique. I felt less isolated after doing the course, learning and sharing with others. I now have a deeper acceptance of my journey with Huntington’s.
Jenny gets involved with as many aspects of the charity as she can. She has taken part in other research to help the wider Huntington’s community and to also help support herself. Each year she attends the Huntington’s disease community conference and AGM to experience connection with the community, staff and researchers.
Some of you who are working every day for the Huntington’s Disease Association, striving to do your best may not realise the impact you are having on every one of us in the community.
Local support
Thank you to Jenny for sharing your story with us.
If you need advice or support from one of our Specialist Advisers or Youth Workers, you can find your local adviser or additional services in your area.