JP was diagnosed with Huntington’s Disease four years ago and he’s since been registered as a hospice patient. “We look after people with life-limiting illnesses and Huntington’s is one of them,” explains Stepping Stone’s Clinical Services Manager, Sister Sheryl Newman.
Huntington’s, an inherited disease that causes the progressive breakdown of nerve cells in the brain, affects a person’s functional abilities and results in physical, cognitive and psychiatric disorders. Most people develop signs and symptoms in their 30s or 40s, but the disease may emerge even earlier.
Medications are available to help manage the symptoms, but these are expensive and can’t prevent the overall decline associated with the condition. JP’s grandmother, mother and uncle all succumbed to it.
Truus Odendaal, a counsellor at Stepping Stone and an integral member of the hospice’s psycho-social services team, has spent a great deal of time with JP and other Huntington’s patients who are registered with Stepping Stone. She works closely with the Huntington’s Association of South Africa to stay up to date with new developments and treatments but says that “unfortunately there is very little support for people with Huntington’s. They receive no assistance from government and there are very few places that will take them, so the responsibility falls to the families. Also, because Huntington’s affects muscle coordination and leads to mental decline and behavioural symptoms, people assume that sufferers are mentally disabled, but this isn’t the case.”
While JP’s slurred speech does make it tricky to hear what he’s saying, there’s no lack of thought going into what he says. “My brain is very good,” he says from his recliner in the Flo Stewart room of Stepping Stone’s IPU. “Lucky for me, I am able to do everything I put my mind to.”
Prior to the accident, JP walked from his room in Raceview every day to call on businesses in the area to sell stationery and other office supplies. A former graphic designer, this is how JP makes his living and manages to maintain his independence.
Unfortunately it’s JP’s ‘physical’ body that makes common daily tasks impossible for him – like typing on a keyboard or driving a car. Even the crutches he was given in hospital had to be replaced by a walker, as he struggled to use them because of his jerky body movements. These are all Huntington’s-related, but they’re not enough to keep him down. “The Lord is great. He helps me a lot. People help me a lot.” JP has no family left on whom he can rely for support. He is dependent on the communities’ goodwill for meals, subsidized accommodation, transport and laundry services.
“If anything, working with these patients has taught me about devotion,” says Truus. “For the families and caregivers, there are no days off – not even a day or two to rest. I feel that it’s so important for them to know that they are not alone. Emotional support is our first priority as counsellors, but with Huntington’s even the most practical day-to-day things need to be addressed.”
There is no timeline for how long someone will live with Huntington’s or how slowly or quickly it will progress. Every case is different. For JP, all he knows is that his cast will come off sometime in September and that he will have to wait until he has fully recovered before he can start selling his stationery again. “I know I’m not going to live forever, but I’m doing my best.”