I would tell them that HD is a neurological degenerative disease that is a combination of MS, Parkinson's, MND and memory loss, and that there currently is no cure. I would also explain that it is a genetic disease and how a person has a 50% chance of getting HD if a parent is positive. I also use an example of a person drinking a cup of coffee.
For a person that doesn't have the HD gene, drinking a cup of coffee is automatic, hand to cup then to mouth. For a person that is HD symptomatic this may take longer because the signals from the brain to the hand and mouth have to find new passage ways due to brain cells dying. This becomes more difficult as the disease progresses.
Please click on the link below as I have found this to be very helpful. Whenever my friend had a new support worker, I would ask them to read this so that they had some understanding of HD and how best to assist my friend especially in the later stages of this disease.
HCC is not a crisis service so if you require immediate support and/or feel in danger or unsafe, we recommend that you please contact 000 or one of the following crisis support services.
