Prognosis

One's neurological changes can be detected when physical symptoms begin, and the prognosis is usually 15 to 25 years with a gradual decline in the physical and cognitive state, until death. However, it must be borne in mind that many changes happen in the brain long before the onset of physical symptoms, which might result in changes to behaviour and thinking, before a formal diagnosis is made.

So, after diagnosis, what happens next? Well, once a diagnosis is made there should be a referral to the Huntington's Disease Association, especially a supervisor for the area. They can liaise with the family and relevant professionals, giving advice and support when needed. A referral to a specialist clinic for Huntington's disease is advisable. This will also link into research for those interested in taking part.

Now, due to the slow-developing nature of the disease, those recently diagnosed might not want to look too far into the future. For those that do wish to plan, thinking about making a lasting power-of-attorney for health and finances, making a will, or thinking about whether they would like tube feeding in the future or some of the options, the Huntington's Disease Association specialist advisor is able to advise and guide families on all their options. People have said to me about their experience of their prognosis, "When the doctor told me that most people live about 20 years with Huntington's, I felt that was okay. I'd had a good life until that point, and I intend to make the most of what I've got left."

Someone else said to me, "I've watched my gran, my father, and my mother with Huntington's disease, and they've battled to maintain their independence and make the most of things. I try not to think about the future too much, and just take each day as it comes. Who knows what the future will bring."