George Best's sister Barbara on being diagnosed with Parkinson's Disease
'When I was first told I had Parkinson's my lip wobbled, but in a perverse way it was a relief to know all the symptoms weren't my imagination ... my life has changed beyond recognition but it's still a good life'
Barbara McNarry has three men in her life; husband Norman McNarry, brother George Best and a recent, less welcome, addition dubbed 'Mr P'. As we sit together in Barbara and Norman's meticulous Comber home, mementos of George are all around; from Norman's 'Best 7' T-shirt to a stunning photo of George in his handsome heyday. But, as we chat over a cuppa, it is the enigmatic 'Mr P' who is never far from all our minds.
For 'Mr P' is Barbara's irreverent 'pet name' for Parkinson's, the debilitating disease she was diagnosed with in March 2017, but only now feels emotionally strong enough to talk about publicly. It's a brave move for someone who, in December 2005, was jettisoned into the spotlight when speaking at George's funeral but whose soft voice can now sound slurred and difficult to understand.
It is a seismic change for 66-year-old Barbara who first encountered the symptoms two years ago on her annual winter break with Norman (70).
"We were at our home in South Africa and I was struggling with my mobility," Barbara explains. "I put it down to a five-year period in which I'd had two knee replacements, spinal fusion and a painful and incurable inflammation in my hips.
"As you can imagine, I wasn't exactly in the position to run a marathon. But nothing alerted me to get checked for Parkinson's."
Luckily for Barbara, though, close friend Fiona immediately booked her a physio appointment. "Off I went to see the brilliant Julie, explaining that I shuffled a lot and my arms wouldn't move when I walked.
"Julie picked up almost instantly that Mr P had become the third 'person' in my marriage," recalls Barbara adding, "The final giveaway was that no matter how much I tried, I couldn't write."
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Suddenly Barbara's world had been turned upside down. Not since George's death had she been so shocked to the core.
"Initially my lip wobbled, but in a perverse way it was a relief to know all the symptoms weren't my imagination," says Barbara who was also experiencing inexplicable bouts of lethargy. "I would get up, make breakfast and sit on a chair dozing until lunchtime. It was the same after lunch and the evenings weren't much better."
On top of her constant tiredness, Barbara "became almost reclusive" with yet more Parkinson's symptoms taking hold. "I sounded as if I was drunk when I spoke and, hard as I tried, I couldn't smile... my face was like a mask."
Barbara grew more and more down, at times not even bothering to talk to Norman. Meanwhile, simple tasks such as cleaning her teeth, getting out of a chair and turning in bed were almost impossible. Even hanging out the washing, folding clothes and cooking was "like the Krypton Factor" for the ever-more frustrated Barbara. "My life had changed beyond recognition," she recounts. "Those days were bad."
Final confirmation that Barbara had Parkinson's came from one of South Africa's top neurologists, Dr David Lurie. "When we first met, he knew by the way I got out of the chair that Mr P was definitely the problem," Barbara recalls.
"He was very frank and said the last thing I should do is retreat into a corner; a positive mental attitude was vital. Many patients thought of Parkinson's almost as a 'death sentence', but Dr Lurie told me 'you will die with Parkinson's, but not from it'."
Yet, despite Dr Lurie's encouraging words, reality hit home and Barbara broke down in tears. And within seconds of arriving home with armfuls of literature, Barbara had consigned the first tome to the bin having read its stark title 'Your carer and Parkinson's'.
"Call me naive or just plain stupid, but I vowed that, as long as I can possibly help it, there's no way Norman was going to be my carer. My husband has had to come to terms with my Parkinson's more than anyone. He is very supportive, but I know in my heart that he struggles watching my deterioration."
For his part, Norman has kept his emotions in check but, like his wife, feels now is the right time to share those personal experiences. "Sometimes when I'm down, I feel that Barbara has the illness but we both suffer from it," he tells me candidly.
"If I dwell on it, it is heartbreaking for us both for me to be Barbara's 'carer'," Norman continues. "I know I don't sometimes show the degree of sympathy and understanding she very much needs and deserves, but it's something I'm working on.
"It is sometimes difficult to keep my frustration and anger under control when people make comments or get annoyed at Barbara's symptoms. Hopefully education and understanding will help."
Sadly over the two years, Barbara's condition has deteriorated and her medication has increased dramatically. One of Barbara's biggest challenges is 'freezing', when her feet literally will not move. This disabling feeling can last for seconds or minutes and can be particularly stressful in busy environments such as supermarkets and airports.
"I was in Marks & Spencer's recently and had a particularly bad freezing episode," Barbara recalls. "A woman about my age said 'Are you moving or not dear?'. On another occasion a man said to me 'I haven't got all day waiting for you to move'."
And her love of travelling has brought with it yet more testing scenarios. "Initially I refused to ask for special assistance in an airport, but after a particularly bad situation last year when we nearly missed our flight to Durban, I now ask for help."
Barbara also has difficulties using lifts, escalators and revolving doors. "I have had quite a few falls including one which scared the life out of me when I fell in our driveway and hit the back of my head off the concrete," she says.
"And in Dublin last year, I fell using the Shelbourne Hotel's revolving door. By the time I was scraped off the floor, my speech made me sound drunk which just exacerbated the problem."
Episodes like these bring home to Barbara her irreversible condition and the importance of Parkinson's UK's recent #ParkinsonsIs campaign to educate people about the disease and its effects.
Barbara agrees with the charity's prognosis that 'People with Parkinson's don't feel understood'.
"I can understand that and I'm ashamed to say that I had no idea about Parkinson's and simply thought sufferers had tremors. Not everyone shows signs of tremors, which for sufferers like me can make life more difficult. So from that perspective it's absolutely vital there needs to be more awareness and education."
And this redoubtable lady wants everyone to know her brain is "perfectly 'normal' in other ways, although I'm sure Norman will disagree!"
She is back to cooking, loves jigsaws and knitting and has recently started Tai Chi to help her balance.
Barbara also spends many hours updating her busy Facebook page which she uses to "keep George's memory alive for the right reasons".
Her pride also radiates when she speaks of her "six gorgeous grandchildren who I absolutely adore".
"When I was diagnosed I didn't know how to break the news to my children, Steven, Jenny and Paul," she recalls.
"I told my older sister Carol who told me I should let them know as soon as possible. They were all shocked and saddened, but have been very supportive and enjoy a bit of banter with me when I'm struggling to walk or talk.
"My close friends are brilliant as well. Basically, life as I know it now is different, but it's still a good life."
Barbara and Norman describe themselves as "fortunate to have each other" through this difficult journey. And as for the future? "Who knows," replies Norman. "But whatever it brings we will face it together."
"Yes, my life has changed beyond recognition," adds Barbara. "However, I try as best I can to do as much as I can. I get up very early so as not to waste a precious minute in life. Sunrise and sunsets have become very important.
"As time marches on and my condition is deteriorating, I have absolutely no problem asking for help. In fact, I'm not too proud to say, like it or not, Norman is becoming my carer."
And in speaking candidly, Barbara hopes she can raise awareness of the condition that, according to Parkinson's UK, is diagnosed in two people every hour in the UK.
"My advice to anyone diagnosed with Parkinson's is don't sit in a corner moping, exercise as much as possible and try to keep a positive mental attitude," says Barbara.
"And if you see someone in a crowded shop or any public place seemingly frozen with a gormless vacant look on their face, please don't ask them to get a move on. It could be me!"