Hospice nurse 'making every second count' after developing same fatal condition as her mum

·6-min read
Gillian McNab is ticking things off her bucket list after being diagnosed with the same condition as her mother. (Collect/PA Real Life)
Gillian McNab is ticking things off her bucket list after being diagnosed with the same condition as her mother. (Collect/PA Real Life)

A hospice nurse who watched her mum die from a hereditary illness is busy ticking things off her bucket list after being diagnosed with the same condition. 

Mum-of-three Gillian McNab, 51, may deal with death every day in her job, but she still found it heartbreaking to watch her mum, Myra McNab, pass away in 2001, aged 68, after developing Huntington’s Disease.

Caused by a faulty gene, the inherited condition results in parts of the brain becoming gradually damaged over time and, according to the NHS, is usually fatal after a period of up to 20 years.

When McNab, from Lanark, Scotland, tested positive for Huntington’s in 2011 not only did she have to absorb her own diagnosis, but she also knew that, in the future, she would have to break the news to her daughters – Emily, 20, a university student, Kerry, 18, a waitress, and Gemma, 13, – who all have a 50% chance of inheriting the condition from her.

But, rather than be defeated by her illness, McNab drew up a bucket list of life goals she had always wanted to achieve and has already begun ticking them off.

Read more: Woman has rare condition which means she only grew one breast

Gillian’s mum was also diagnosed with Huntington’s Disease. (Collect/PA Real Life)
Gillian’s mum was also diagnosed with Huntington’s Disease. (Collect/PA Real Life)

“I felt empowered by the knowledge that I had this disease," she explains. 

“It was like all my life’s worries slipped away. Time is so precious to me now and I’m ensuring that I make my time count.

“I don’t want to waste a second of it.”

Since her diagnosis in May 2011, McNab, who is not yet symptomatic, has been living life to to the full. 

“I had made the decision to get tested and I’d bought myself a bottle of Bollinger Champagne to celebrate if it was a good result," she says of the moment she received her diagnosis. 

"When I got the bad news, I decided life was too short not to drink it anyway!”

Read more: Wife has to remind husband they're in love every morning due to rare condition which causes memory loss

One of Gillian’s bucket list adventures was to travel to Australia. (Collect/PA Real Life)
One of Gillian’s bucket list adventures was to travel to Australia. (Collect/PA Real Life)

While McNab says learning of her diagnosis was difficult, she also considers it a turning point in her life. 

"It was just like flicking a switch," she says. "My mental health actually got better because it was just a relief to finally know."

McNab says her mum was diagnosed with the condition in August 1999, but as she was due to get married the following month and was focussing on supporting her mother, she didn't think about getting tested. 

"It wasn’t until about 12 years later that it really started to bother me," she explains. "I didn’t have any symptoms, but I was tortured by the uncertainty. 

"I was in the middle of a marriage separation and I just felt like it was time to know.”

Watch: Little girl with rare condition defies the odds to walk again. 

The day after her diagnosis McNab decided to push her health worries aside and head to Alton Towers with her nephew.

“I didn’t tell him about my diagnosis, but I made sure to get front row seats on all the fastest rides," she said.

“I threw my arms in the air, something I never would have done before, and had no fear. It was like I was really living for the first time.”

The following day, McNab sat down to write her bucket list, adding dream holiday destinations and daring stunts she hoped to complete. 

Read more: Mum who cannot remember wedding day or giving birth keeps track of her life with 34,000 photos

Gillian with her daughters, Emily, Kerry and Gemma. (Collect/PA Real Life)
Gillian with her daughters, Emily, Kerry and Gemma. (Collect/PA Real Life)

But it was another six years before McNab revealed her diagnosis to her daughters.

“I don’t have any symptoms yet and my girls were still young when I was diagnosed, so I didn’t want to worry them,” she explains. 

“It wasn’t until 2017 that I sat them down to tell them. They were absolutely amazing and have become my biggest cheerleaders.”

Symptoms of Huntington’s Disease normally present between the age of 30 and 50 but both McNab and her mum have late onset.

Because of this, her daughters have all made the decision not to be tested.

“If any of them choose to do it then of course I’ll support them in that, but at the moment they have no plans to get tested and they haven’t really expressed any opinions on it. So, we’ll cross that bridge when we come to it.”

Now immersed in ticking off experiences on her bucket list, McNab has already completed a motorcycle ride, dream trips to Florida and New York City in the USA, and another to Australia.  

She has also tackled two fire walks, which saw her racing across hot coals.

In 2019 she leapt from a plane 10,000ft in the air, before parachuting to the ground.

“It was exhilarating,” McNab explains. “I’m so glad I did it. I’d been terrified at the thought of it, but it was such an adrenaline rush.”

The jump also raised £6,000 for the Scottish Huntington’s Association.

Read more: Physiotherapist's 'bad hangover' turned out to be a rare condition that left her paralysed

Gillian raised £6,000 for charity during her skydive. (Collect/PA Real Life)
Gillian raised £6,000 for charity during her skydive. (Collect/PA Real Life)

McNab is now preparing for her latest stunt, a wing walk, which will see her strapped to the wing of a plane as it takes off.

“We’re planning for the plane to do a loop-the-loop in the air while I’m on the wing," she says. 

“We’re hoping lockdown restrictions will have eased by July, so I can do it."

Another task McNab hopes to tackle post lockdown is dating.

“It can be very difficult to date with Huntington’s Disease," she says. 

“I haven’t got the luxury of waiting for the right person to come along and I don’t have time to waste with someone who isn’t right for me, but it would be nice to meet someone special. 

"I think that’s the only thing I’m missing from my life now.”

But in the meantime she is focussing on her bucket list and raising as much awareness about the condition as she can. 

"That’s what keeps me upbeat and positive," she explains. 

“I’m not on any medication or treatment because there’s nothing doctors can do, especially as I’m not symptomatic yet.

"It’s a degenerative disease that affects all of the brain, so it’s just a waiting game.

“I’m enjoying every second of my life, I’m not taking any of it for granted.”

For more information, visit www.hdfamilymatters.com

Additional reporting PA Real Life.

Watch: Couple who lost both children to illness honour son's wish by fostering. 

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