About two and a half years ago Lurgan man Robin McKeown, 54, started to notice a range of unusual health symptoms.
He said; “I was shuffling my feet, my fingers wouldn’t move, I couldn’t turn round, or walk through a door with something in each of my hands and I was falling backwards.”
Naturally concerned, the married father-of-four went made an appointment with his GP.
“He more or less told me that I had a drink problem and that was the cause of my shaking.
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“I stopped drinking - not that I was drinking much anyway - but six months down the line the symptoms were still the same.”
Robin eventually saw a consultant, who told him he was 99 per cent sure he had Parkinson’s. Follow-up scans confirmed the diagnosis.
The news was “heart-breaking”, for Robin, who owns a bar/restaurant and off-licence.
“I’ve worked all my life since I was 16, I never had a day off on the sick. I haven’t worked for the past two years and it’s hard to get the days in. My son and daughter run the business now.”
Robin added that when he received the diagnosis his consultant told him not to research it on the internet.
“I didn’t Google anything, but others in the house did. I just preferred to see what way things happened.”
Robin is one of an estimated 3,900 people in Northern Ireland with the neurological condition.
Celebrities raising the profile of Parkinson’s
While a number of celebrities have helped draw attention to Parkinson’s following their own diagnoses – including the late Muhammad Ali, Michael J. Fox, actress Lysette Anthony and broadcaster Jeremy Paxman – there remains a lot of misunderstanding about the condition, which occurs when a person’s brain doesn’t produce enough dopamine, because the nerve cells that make it have died – resulting in a wide range of symptoms.
Tremor, or involuntary shaking, is one of the main symptoms associated with Parkinson’s – but there are actually more than 40 known symptoms, ranging from problems with sleep, motor skills and dexterity, to muscle stiffness, pain and ‘freezing’, where you feel like your feet are glued down and you can’t move.
There’s no cure and Parkinson’s is progressive, but treatments can help, and charities like Parkinson’s UK are fighting to improve this.
It’s the fastest growing neurological condition in the world - every hour in the UK, two people are diagnosed with Parkinson’s. That includes younger adults – and they don’t always have the tell-tale tremor.
Robin said; “I never knew so many people had it, but from I have joined a wee Parkinson’s group - there’s a dozen of us meets every three weeks in Belfast, and I’ve another group meeting in Portadown as well - there is a lot of people out there with it.
“But many people are embarrassed to go to these things, because of their illness - their hand or leg is shaking and they are worried people will assume things.”
Robin has been on medication since receiving his diagnosis.
“It’s trial and error with the medication, whether it’s going to be strong enough for you or too strong or whatever.”
He added: “Sometimes people think you are drunk getting in and out of your car because you are trying to climb over it to get yourself straightened up.
“Now, I can’t stop to talk to anybody unless I have a walking stick with me for balance.
“Picking up the knife and fork at dinner time is sometimes a chore, as well as getting ready to go out. Instead of taking half an hour, it takes me an hour to get out.
“There’s things I took for granted years ago, that I did easily, aren’t so easily done now.”
Living with Parkinson’s can bring additional emotional and psychological challenges too, particularly due to worries about it progressing and the impact that may have.
“It is hard to stay positive sometimes,” said Robin.
“You say to yourself sometimes, if the tablets aren’t doing anything, why am I bothering.”
He can get very anxious and struggle to sleep and suffers from claustrophobia.
“I feel claustrophobic if I am in the hallway in the house and somebody’s standing in front of me. I’ll have to say to them to get out of the way, I need to get to a seat quick because of the way I’m shaking and wobbling about.
“I went to get some new clothes the other day for my daughter’s graduation. They put me in a dressing room and I felt that I needed to get out quick, because I felt so confined.”
But he said his family have been very supportive.
“They all look out for me and make sure I’m OK and not doing something I shouldn’t.
“I can’t even brush the floor, because I can’t take one hand off the brush. I can’t light the fire. I can’t peel spuds. There’s a whole lot of things that I used to do that I can’t do now around the house. I can’t cut the grass or tidy round the house. That makes me feel down.
“I tried to wash the car one day - but no chance. There was nothing to lean on, so I just had to give that up as a bad job. Anything I need done now, I am relying on someone else to do it, because I can’t.”
Robin said: “I’d love to get back to where I was three years ago. I wish there was a cure and I’d like to see more research.”
And there are reasons to be hopeful. Medication has made life a lot more manageable for people with the condition and Parkinson’s UK is pushing to deliver a new treatment by the end of 2024.
Ahead of the Northern Ireland Assembly election on May 5, Parkinson’s UK Northern Ireland said it wants everyone elected to understand and prioritise the needs of the Parkinson’s community.
Alongside fellow members of the Northern Ireland Neurological Charities Alliance (NINCA), it is asking for neurology services to be prioritised when addressing waiting lists, as 70 per cent of people are waiting undiagnosed for over a year after a referral to see a neurologist in Northern Ireland.
The charity is also calling for increased funding for medical training places in neurology, pointing out that just two out of 138 core medical training places are attached to neurology in Northern Ireland each year, meaning getting more doctors trained will take many years.
It also wants to see the provision of adequate funding to support the recommendations made by the completed Regional Review of Neurology Services, which is said is essential to make sure neurology services can fully meet the needs of patients.
*For more information visit www. parkinsons.org.uk or the helpline: 0808 800 0303, opening hours - Monday to Friday: 9am to 6pm / Saturday: 10am to 2pm, closed on Sundays and bank holidays. The helpline is a free confidential service providing support to anyone affected by Parkinson’s.
Trained advisers, including specialist Parkinson’s nurses, can provide information and advice about all aspects of living with Parkinson’s, such as: medical issues, including symptoms and treatments; employment and benefits; health and social care; emotional support; local activities; signposting to other sources of information.
They can also put you in touch with a Parkinson’s local adviser if you need more local or in-depth support.