Huntington’s Disease has blighted the family of medical researcher Sally Pearson and now she too has succumbed to the inherited genetic disorder. Catherine Scott reports.
From a young age Sally Pearson knew that she was likely to develop the condition which killed her grandfather, father and older brother.
But rather than shy away from it she was determined to dedicate her life to finding out more about Huntington’s Disease and help further research into it.
“I had one elder brother who died from Huntington’s when I was young. My father and grandfather both had the disease. As the condition is hereditary, I knew the chances were fairly high that I could also have the condition,” says Sally, 51, from York.
Huntington’s disease is caused by a faulty gene. The gene, which produces a protein called Huntington, was discovered in 1993. In some way – which is not yet understood – the faulty gene leads to a damage of the nerve cells in areas of the brain. This leads to gradual physical, mental and emotional changes.
There is a 50-50 chance of inheriting the faulty gene if one of your parents has Huntington’s disease. Anyone who inherits the faulty gene will, at some stage, develop the disease.
As a result Sally knew that she had limited time to learn all she could about the inherited disease which could one day end her life.
After leaving school she went on to study biomedical science at Sheffield University, going on to to gain a PHD in neurology.
“I knew I was at very high risk of getting the condition so I wanted to find out as much as I could,” says Sally.
She went on to work as a research assistant and co-wrote a number of papers on the condition. But by the late 1990s she had developed symptoms of Huntington’s Disease which meant she had to give up the work she loved.
Despite her deteriorating condition Sally managed to live on her own in York until 2012 with her beloved dog Cassie for support and companionship.
By then she needed around the clock support and it was no longer possible for her to live independently.
Sally was assigned to Sue Ryder Holme Hall in York but social services felt that she wasn’t able to take her Cassie with her and started discussions on separating them.
“I have always had dogs and I have had Cassie for nine years, she’s more than just a dog to me, she’s my best friend,” says Sally.
“When I heard that they were going to take my dog away that was the worst day of my life. I was completely devastated. The thought of any kind of future without Cassie really upset me.”
But Sue Ryder Care Centre soon stepped in and made sure the two weren’t going to be separated.
“I was happy that I wouldn’t be parted from Cassie. She really understands what I am saying and is a great company as I don’t have any family who visit.”
Cassie also helps Sally.
“Due to my condition I am prone to falling over. Cassie rescues me as she barks to alert staff that I need assistance, which can be a lifesaver.”
When they both arrived at Holme Hall Sally felt upset that she had to stop living on her own but Cassie settled in straight away.
“The staff here were great. At first I was unsettled but they soon moved loads of personal things into my room so it soon felt like home.
“It is the little things that make a big difference, like having my own furniture, TV and books.”
Sally says she and Cassie are enjoying life at Holme Hall.
“I love playing catch with Cassie and walking her but if I am too ill to take her for a walk the girls (staff) take her for me. She sleeps by my bed in a basket and is always with me. She gets very spoilt here that’s why she’s so fat!”
Sally used to enjoy being in a choir but can longer sing but a life-long friend visits her and takes her to see the choir perform which she still enjoys.
Sally has gained a good understanding of the disease from studying and is determined that she lives life as normally as it will allow.
“I love quiz night here, we play Who Wants To Be A Millionaire and I’ve won several millions!
“I also enjoy going on shopping trips with my friends here and visit Betty’s Tea Shop for tea and scones.
“I love visits to the cinema and theatre. Recently we saw Les Miserables and Phantom which was great.
“Last year we went on an activity break in Northumberland and I enjoyed sailing, this year we are going to the Lake District and I can’t wait.”
Cassie also enjoys a holiday and stays with a friend.
“She stays with a friend who has cats, she’s not used to cats but I think she enjoys teasing them.”
But the pair miss each other and are soon reunited.
“Cassie is such a lovie, she’s really soft to stroke, just like a teddy bear, and it’s very relaxing stroking her.
“Cassie is a very special friend and a special kind of dog.
“I get involuntary movements in my arm, so sometimes, if Cassie is on the lead, it can jolt her but she takes it all in her stride. It’s great that she is with me here.”
A spokesperson for Sue Ryder said: “Sue Ryder Personalised Care can help patients carry on doing the things they value, for Sally this was keeping her dog, trips to the theatre and seeing her old choir sing.”
As for Sally she aims to live life to the full with Cassie and make the most of what time she has.
This week is Huntington’s Disease Awareness week and today a special event for health professionals is being held in Leeds. HD and Mental Health Hand in Hand for health and social care professionals is taking place at the West Yorkshire Playhouse.
• For more infomration on Huntington’s Disesae visit www. hda.org.uk