I can't control what it will do to me but I can control what I do just now ... and I still have time to do a lot of mischief

Published date06 January 2021
Publication titleWishaw Press
Mum-of-three Gillian watched her own mother's gradual decline from the hereditary disease - and, as a woman whose vocation is to care for people who are nearing the end of their lives, she knows that her own daughters will one day do the same.

At the age of 51, Gillian is asymptomatic.

She can't control when Huntington's will make her acquaintance, or how it will impact her body and her mind.

But unlike the people she cares for at Strathcarron Hospice in their final days, some of whom are younger than she, Gillian can control how she lives her life now.

And she feels blessed to have time to treasure that life and ensure that not a moment of it is wasted.

The symptoms experienced by her mum, Myra, were already advanced when she was diagnosed with Huntington's disease in 1999.

Myra had her first heart attack at the age of 40, and she'd had major open heart surgery twice before Huntington's disease was diagnosed.

"Doctors put her symptoms down to complications associated with heart disease," explained Gillian.

""hey thought she might have had mini-strokes. People with Huntington's have involuntary jerking movements, and they thought there had been some damage to the brain because of a lack of oxygen during cardiac arrest, and that was the cause.

"Not until she was very symptomatic did they send her to the Southern General, where they tested her for everything.

"When Huntington's was diagnosed, it came as a massive blow to the family.

"Even though I was a nurse, I didn't know anything about the disease. It was an absolute shock, especially to learn that it was hereditary.

"People in mum's family hadn't grown old enough to show any symptoms.

"She'd had ill health since the age of 40 and she was not properly diagnosed until she was 66.

"Once we knew the symptoms, we realised she'd been showing signs since her mid-50s."

Gillian and her dad, Davie, managed to care for Myra at home - but a year after diagnosis, her hospital admissions became more frequent.

"On top of Huntington's, she still had heart failure and complications," explained Gillian.

"She had a feeding tube because her swallowing was bad. She lost a lot of weight. Dad was finding it really hard to cope.

"She didn't have many psychological symptoms - mostly physical.

"Her balance was really poor and she was having a lot of falls and needed help getting in and out of bed."

Gillian. had her first daughter, Emily, in 2000 and shortly before she gave birth, her mum moved into a care home where she passed...

To continue reading

Request your trial

VLEX uses login cookies to provide you with a better browsing experience. If you click on 'Accept' or continue browsing this site we consider that you accept our cookie policy. ACCEPT