Tell us about you as the carer:
Hi, my name is Catherine, I am 50 years old and I live in Durbanville, Cape Town, with my husband, younger brother and 23 year old niece, Melissa who has Juvenile Huntington Disease. As Melissa’s aunt and carer, caring for her physical and spiritual needs is important. Our daily schedule starts with medicine intake at 7:00am, breakfast at 7:30am and shower or bath at 8:00am. While we try to keep to this schedule, it is difficult at times to do so. Juggling housework, being a carer, working with a 15-year-old teenager with Autism and giving art classes can be a challenge, but also has its rewards.;
What is your experience with HD:
Melissa enjoys going to the library, a stroll round the block and to the park, in her wheelchair. She enjoyed writing and painting, but can no longer do so, as her hands shake. Huntington Disease has been passed down from my Grandmother, my Dad, uncle and aunt. My older brother passed away from H.D. and passed it onto my niece, Melissa. Juvenile H.D. was passed on from Melissa to her 5 yr old daughter, Elizabeth-Rose. My younger brother has also been diagnosed with H.D. and the symptoms he is experiencing is depression, mood swings, muscle stiffness, twitches and fatigue. Melissa has difficulty walking and needs assistance. Her food needs to be finely chopped as she has difficulty with swallowing and needs help bathing and dressing. Melissa finds it difficult to speak clearly and her right foot turns inwards, which causes her to lose her balance. She has fallen a couple of times when her legs just give in. Her hands are shaky and weak at times, which prevents her from stopping her falls or holding a cup/glass.
Support given thus far:
We have been fortunate to receive a disability grant for Melissa and she received her medication from the state clinic. A friend referred us to Iris House, who assisted us with a carer for 4hrs a month, so my husband and I can have a night out. We have received family support and support from HASA, in trying to find placement for Melissa. These we have been very grateful to have received, although we have not been successful in finding a home for her.
How you can help:
- Make an awareness of Huntington Disease in our community. Because of lack of awareness about H.D., many homes close the door to patients with H.D.
- Finding/funding a group home for H.D. patients. There is a great need for a group home for Juvenile H.D. patients and patients below 60 yrs of age. Many need frail care and old age homes are not a suitable environment for younger patients. H.D. patients are aware of their surroundings and it is their body that is failing them, not their minds.
- Frail care assistance, dental care for Melissa and Joel, a neurologist and a physiotherapist.