"Here I am sitting on the balcony patiently waiting for the sunrise. We’ve just left Ecuador, heading to the Panama Canal and getting very close to coming home.” Barbara McNarry penned these words as she reflected on her epic adventure aboard the sumptuous Queen Victoria cruise ship. She and her husband Norman were sailing from their second home in South Africa across the Atlantic Ocean and around the South American coastline.
Sharing this amazing experience was, of course, the infamous ‘Mr P’, as she dubbed Parkinson’s following her diagnosis with the debilitating condition. Yet, despite his unwelcome presence, Barbara was relishing a journey she described as “physically beneficial” and one filled with emotions that at times “have taken me back to the person I once was”.
The effects of Parkinson’s had taken a cruel grip on someone who, like most of us, valued her independence and ability to travel. But, as coronavirus engulfed the globe, little did she and Norman know that the journey home would take 11 days longer than anticipated, albeit in the safe and luxurious surroundings of the Queen Victoria, and a whole new battle awaited.
“As we neared Florida, the world was rapidly closing down,” explains Barbara of her ship’s change of plans. “Airlines were cancelling flights, so we and approximately 700 other passengers had to make a decision; stay on board or disembark.
“I really wanted to get off, mainly because I had an extremely important neurology appointment. However, following regular updates from the captain, we decided to stay on until Southampton. It was a gamble but we got home in the end.”
Despite its disruptive conclusion, for Barbara (67) and husband Norman, their dream trip provided a perfect escape from their Parkinson’s reality.
Reminiscing on the ship, Barbara recalled: “Just last night Norman told me how happy he was to see me laughing again. He hasn’t seen me laugh properly for a long time. That was very hard for me to hear, as people [will] know my sense of humour.”
And as the equator approached it was time for Barbara to become a fully fledged ‘shellback’. This whimsical term refers to someone who has crossed the equator and taken part in an initiation ceremony overseen by King Neptune himself. Already a shellback, Norman often wished his wife would join him in this briny baptism.
“After much deliberation I decided to surprise him, but was very concerned that Mr P might prove problematical,” said Barbara. Undeterred, she enlisted the help of Radovan, her on-board concierge, and his colleague Natalie. “What struck me about Natalie was her genuine caring nature, which is sadly a trait not everyone displays towards Parkinson’s sufferers,” Barbara explained.
“As the day drew nearer my nerves were jangling, but on the morning of March 7 I was up with the lark. The date is significant as it marks three years since I was diagnosed with Parkinson’s and just happened to coincide with International Women’s Day.”
She changed into her swimsuit and Parkinson’s T-shirt, which she wears with pride on every possible occasion, and waited poolside to surprise her husband. “I just wish I could have captured the look on his face when I walked out to the pool for the traditional kissing a dead fish. It’s become a bit of a joke that I actually preferred kissing it to kissing him,” she laughed.
Yet even this seemingly simple ceremony brought with it a raft of difficulties. “I was concentrating so much on walking and not shuffling my way around the pool, I was sort of oblivious to the hundreds of people watching it all unfold. Apparently, when I kissed the fish and became a confirmed shellback I got a huge cheer.”
And that is what has been keeping Barbara going ever since she revealed her diagnosis in these very pages. Initial scepticism turned to relief as friends and strangers sent her good wishes in equal measure.
“Because of Mr P I’ve met some amazing people, and there isn’t a single day which goes past without someone giving me loads of encouragement with a thumbs-up or a ‘well done’,” she said.
From the encouragement of the staff aboard her ship to everyone back home, that support has given Barbara many much-needed boosts. She continued: “What pleases me most is that I’ve been able in some small way to enlighten and educate them on Parkinson’s.
“The Parkinson’s motto — ‘Change Attitudes. Find A Cure. Join Us.’ — is simple and straight to the point. The majority of people understand what we are saying, but there is so much more to be done to educate those who don’t.”
And as for her decision to board a ship and entrust her fragile health to its team, there was never any doubt. “Three different health professionals suggested I shouldn’t have made this trip and I must confess I had huge reservations,” explained Barbara.
“However, I have no doubt whatsoever that I made the right decision. No cooking or cleaning for 56 days. Chocolates on our pillow every night.
“Who else gets the chance to drink rum cocktails in Barbados; fish for piranhas on the Amazon River; tango in Buenos Aires; see glaciers in Chile; round Cape Horn; do tai chi with the sun coming up over the Pacific; transit the Panama Canal, and, of course, become a shellback? That’s exactly what I’ve been so privileged to do with the love of my life.”
And if there was any remaining doubt about the cruel cards that Mr P can deal, Barbara had a stark realisation when she came face-to-face with a fellow sufferer. “I met a lady who was in a wheelchair. I was absolutely shocked to see how Parkinson’s had taken hold of her life and sadly had the upper hand.
“Her tremors were the worst I’d ever seen and her speech was so affected that, in the end, I suggested she just nod or shake her head. Her daughter told us that she had reached rock bottom.
“When I left her, I just squeezed her hand and said: ‘Never give up’. The tears rolled down her cheeks and sadly I think she already has.”
Barbara’s own message to her unwanted companion remains resolute: “Mr P... whilst there’s no doubt my condition is deteriorating, and there are times when you have the upper hand, you will not get your way every day and I’m certainly not going to let you get the better of me. I will never give up.”
Fast forward a few weeks and Barbara and Norman have returned to their Comber home and a 12-week period of isolation, based on her own condition and the fact that Norman is 71-years-old. It’s a life much changed since her relatively carefree Cape Town departure.
“We left a world which was quite normal,” she recollects. “And now it’s a world which, like my life with Mr. P., has changed beyond recognition, but it’s one in which we all must play a part in looking out for each other.
“I miss my family desperately though, but I know it’s for the greater good of not just Norman and me, but for everyone.
“So, just over seven weeks to go and we will appraise the situation, but I know that my three children, six gorgeous grandchildren and my sisters will get the biggest hug ever.
And Barbara’s condition continues to have a significant impact on her daily life.
“Little did I know that people with Parkinson’s, no matter what age, fall into the high-risk category of the dreaded virus. For us it’s so far, so good. However, it started me thinking about fellow sufferers who have no one to talk to.
“At the best of times the world with Mr P is often a lonely place. We don’t walk the same, talk the same and think the same, which leaves many feeling embarrassed and ashamed. This can lead to staying inside because it’s an ‘easier’ option.
“However, because of the terrifying potential repercussions of going out, their choice has been removed. Some people will enjoy the isolation, but many fear the worst while sitting alone in their homes.” And against this backdrop of unrelenting lockdown, coupled with her ongoing battle with Mr P, thoughts of her famous brother are never far away.
“There’s seldom a day when George doesn’t pop into my head, especially now when I need a bit of reassurance,” she said. “Of his own life he said: ‘All the bad times cannot wipe away the good memories. And despite all of the ups and downs, when I look back on my life as a whole, it’s impossible for me not to feel blessed’.
“That’s how I feel about my life so far and, with sensible precautions, my future life as well. Parkinson’s is scary and unpredictable, but this coronavirus is even more so.
“In our wee country we are very resilient, but this virus needs to be tackled head on. So please stay home and stay safe.”
Parkinson’s is one of the underlying health conditions identified by the Government as increasing the risk of serious complications from coronavirus, and right now, the 145,000 people living with Parkinson’s in the UK need more support than ever. This month, Parkinson’s UK launched an Emergency Appeal and must raise £95,000 every week over the next three months so it can deliver critical support services. To donate to Parkinson’s UK Emergency Appeal visit www.parkinsons.org.uk/donate