Sandy and Steve’s Story – Living with Huntington’s
About Huntington’s disease
Huntington’s disease affects the body’s nervous system – the network of nerve tissues in the brain and spinal cord that coordinate your body’s activities. This leads to progressive deterioration – physically, cognitively, and mentally until the individual becomes dependent on the help of others. Symptoms include motor (movement), mental health (for example mood) and cognitive (for example learning and thinking) disturbances, which in the majority of cases appear in mid-adult life.
Huntington’s disease affects around 8,000 people in the UK or 1 in 10,000 people. Up to 32,000 people in the UK live at risk of developing the disease. It can start at any age, but symptoms usually first appear between ages 30 and 50. Symptoms gradually get worse over 10 to 25 years until the person dies. Every child conceived naturally to a parent who has the faulty Huntingtin gene that leads to Huntington’s disease has a 50% chance of inheriting it.
Sandy and Steve’s Story
Steve started dating Sandy in 1969 when he was 17 and she was 16. “In those early days, I knew that Sandy’s mum wasn’t well, but I didn’t think too much about it,” recalls Steve. “She was diagnosed with Huntington’s Disease in 1970, and ironically, at that time I was studying for a degree in genetics, so I had the chance to read up all about it.
“I guess I did realise at that point that there was going to be a chance that this would come into our lives, but fates were sealed by that point, and Sandy and I were very much together. When you’re that age, you feel a little bit invincible, so I didn’t really worry too much about it.
“We got married in 1973 and our children James and Stacey were born in 1979, and 1982, and there we were, a busy family. The genetic test came out in 1994, and Sandy was one of the first people to get tested and that’s when we found out that she had the gene. The children were young, but we decided to tell them straight away, so they knew from the start. In hindsight, that proved to be a good move as it allowed them to share this information with their friends and start to build up that essential support network.
“Sandy became symptomatic over 20 years ago, and since then she has declined significantly; she is now confined to her wheelchair and needs to be hoisted, doubly incontinent and mostly fed through a percutaneous endoscopic gastrostomy (PEG) feeding tube because her swallow is severely compromised. She was recently diagnosed with bowel cancer and has had two emergency admissions to hospital with aspirant pneumonia.
“My job looking after her is full time. I retired over 10 years ago to look after her. I’ve learned to be a good carer but it is relentless.
“We are incredibly fortunate that our children have both tested negative. That means that our grandchildren will not be at risk either.
“There’s a lot people don’t realise about ‘caring’ and what the means for people like me. I don’t think people are aware of the full weight of caring responsibilities. Sandy has carers from Abbots Care that come in to help me. It used to be for 12 hours, but we’ve gradually increased the care as her condition has deteriorated and we’re now up to 68 hours each week which really helps, but I’m still on duty for the remaining 100 hours, including all the night care – without pay. It is highly probable that we will finish up with 24/7 care.
“Our carers are absolute diamonds for whom I have the greatest of respect. I don’t have any choice here, but they do and I’m full of admiration.
Spreading Awareness About Huntington’s Disease
Sandy and Steve’s story has been shared by several news outlets, helping spread awareness about the disease and its impact, plus the realities of being a full-time unpaid carer for a family member.
Read the story in the Bournemouth Echo, Yahoo News and MSN News.
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