Ashley Clarke, a carer, full time student, volunteer and trustee of Huntington’s Disease Association Northern Ireland (HDANI) describes her experience of caring for her dad who has Huntington’s.
“When I was 14 years old my father was diagnosed with Huntington's, an incurable brain disease that slowly breaks down the centre of the brain causing a gradual loss of control over movement, speech, behaviour and thoughts.
At the age of 16 I became his carer along with my brother Ryan. Two years is not much time to adjust and face the harsh reality of HD. From then I have had to watch him change every day as the HD mask takes over his whole body, mind and mannerisms.
At the age of 20 I had to cut his food up for him and have people stare. At 21 I was trying to manage his medication- more tablets in a day than I’d had birthdays. At the age of 22 I faced the issues of toileting my 48 year old father.
I have spent ten years defending him from people accusing his of being drunk because of his slurred speech and lack of balance, picked him up every time he has fallen and patched myself up when I’ve incurred injuries trying to save him. My brother Ryan has faced the same struggles and over the past ten years it has gotten no easier as our father's needs have increased and we face the reality that we too may end up inheriting this cruel disease. We have given up a lot but have no regrets because we know our father has been well looked after and has been able to enjoy many moments of our time together.
The one thing I find most shocking is not one health professional stopped to ask were my brother and I ok. This HD Awareness week I ask professionals to educate themselves about the disease and consider the impact not just on the patient but on the carers and ask the simple vital question. How are you doing?
For information, advice and support about HD visit www.hdani.org.uk”