Katarina Mattsson (Sweden)
Just one year ago, Pär Ohrberg, aged 45 and suffering badly from Parkinson’s, faced the daunting prospect of early retirement. The disease that he had long refused to recognise, seemed to have won. “When I awoke in the morning, I almost had to crawl to the fridge to get my medicine. I felt cramps in my whole body and wondered how on earth I would be able to get to work,” he recalls.
Pär was 36 when he was diagnosed with Parkinson’s at the beginning of 2000. It was a huge setback for him as he had always defied the odds in all that he did. As an IT senior manager he was used to working under pressure and in his spare time he loved to travel and meet new people. He always enjoyed doing that little bit extra. In other words, life in the fast lane, so initially Pär ‘didn’t have time’ for the doctor. It was only when he was no longer able to type at his computer and felt tremors in his leg that he sought help.
Pär’s wife, more alert to what was happening had a clear opinion on what Pär should do. “But she knew just how ‘stupid’ I could be, and that the initiative had to come from me,” says Pär, who describes his wife as his ‘backbone and heroine’ - a woman of great patience - who, as Par’s health and judgement began to fail, was exposed to many trials and tribulations.
Denial
Despite the Parkinson’s diagnosis and his already stressful job, Pär accepted an even more demanding position and continued to deny and hide his illness as best he could. He simply shifted up a gear; he took strong medication, was often out on the town, and drank more alcohol than was good for him. But he was easily irritated and at work became known as the ‘Duracell rabbit’ (an annoying, over-energetic, battery-driven, advertising campaign rabbit that never stops running around).
It seemed that Pär could continue to keep up this pretence, but shortly after his 40th birthday, it all came to a very abrupt halt when he experienced exhaustion and depression. He was burnt out. The classic symptoms of substantial memory loss, orientation difficulties, sleeping problems and general weakness were all there. The Duracell batteries had run out and Pär was off work for the majority of 2004. “My Parkinson’s became much worse after my depression and I slowly began to realise that I must take my illness more seriously.”
But despite this vow, Pär still wasn’t ready to face the consequences, even though the symptoms frightened him. Certain physical functions began to desert him, but worst of all, since he could never predict how he would feel at any one time, he could no longer live his beloved fast, hard life, with margins always cut to the absolute minimum.
Par recalls that “I would feel like a strong and decisive Managing Director in the morning, but hardly be able to make a cup of coffee during the afternoon.” Or sometimes on his days off from work that might begin well, he would promise to have fun with his two children, only to have to go back on his word in the afternoon when he had no more energy left.
Personality changes
It’s well known that Parkinson’s affects physical functions – that people ‘freeze’ in the middle of a movement – yet it was the ‘mental freezing’ or personality changes that were the most problematic for Pär. “I could be sitting by the computer, unable to press the p-tangent, and at the same time the telephone would ring but I was unable to answer it. Looking back, I readily admit that I was not doing a good job at work, but thankfully my bosses had enormous patience with me.”
If this wasn’t enough, Pär took high doses of a medication that affected his judgement. He lived above his means, put off decisions and ignored issues that needed dealing with, despite the serious consequences of his actions. And as a business consultant, not delivering what you promise is not acceptable. Pär’s family suffered too and in 2006, he fled into the arms of another woman. “My whole behaviour became unbalanced and my family and I really had it tough for many years. I found myself in a very unhappy state.”
Further deterioration
His wife, however, forgave Pär and they patched up their marriage, but at the same time, his illness was getting worse. Pär was no longer allowed to drive, yet travelling by train to work also had its problems. He often missed the train because he failed to make the final few metres to the carriage before the doors closed. It took many attempts for him to time his departure correctly so he could catch the train. He was also stiff, spoke poorly and felt stared at on the train. People tended to speak over his head, as if he was not ‘all there’, and he felt both slow and stupid.
The high-performing, super-social, dominant and ever-challenging Pär was no longer to be seen. He became more and more withdrawn and despite his tiredness and apathy, he slept badly. “I had lived in denial of my illness in an attempt to protect myself. Maybe it’s typical male behaviour, but now it had caught up and overtaken me. And I wasn’t fully prepared for it.”
The future looks brighter
But the turning point for Pär came towards the end of 2008. He saw a new doctor, Charlotta Lind at the Huddinge University Hospital just outside Stockholm. She believed that the medication Duodopa®, which provides a smooth delivery of medication, could be suitable for Pär and his symptoms that tended to fluctuate during the day according to when he took his medication.
Pär became one of 120 Swedish people with Parkinson’s to be treated with Duodopa®. Firstly, to see if this therapy would be suitable for an individual, a test is carried out in which the liquid medication is administered via a nasal probe into the body. Everything is performed at the hospital by a team that includes specially trained nurses. Pär cannot speak too highly of the treatment he received at the hands of the team in Huddinge. Together, they displayed a comprehensive approach that he had not experienced previously in the healthcare system.
Pär was allowed home for the weekend after one week following the test. “I experienced such energy that I almost became hyperactive. When the rest of the family woke up at nine o’clock I had already exercised, fixed things in the garden, changed to winter tyres on the car and who knows what else. The old Pär – the one I thought was dead – was back!”
One week later it was clear that Pär was a good candidate for permanent Duodopa® treatment and a simple operation was performed in which the probe was located in Pär’s abdomen. The probe was connected to a small pump with a cassette containing Duodopa®, allowing the liquid medication to be introduced directly into the small intestine. “Many of the people I know are aware of the pump and I usually describe it by saying that I receive a smooth, continuous flow of medication – ‘the cup doesn’t overflow, but neither does it totally empty’. It keeps my system in balance; it’s as simple as that.”
Current developments are aimed at making the pump and medicine cassette a little more discrete. But Pär is not complaining.“It’s no big deal, it’s like carrying a small packet of flour – I can walk, run and speak as normal – and what’s the alternative? At first I felt it was a little sweaty during the summer, but it works so well and I have no side effects. My sleep is also getting better all the time and I have stopped taking a whole load of tablets. I haven’t felt this well for the past seven years. I cannot believe it’s true and neither can my wife.”
The future IS brighter
“Things could have continued to go downhill for me, but
now I have just begun a new job and am working full-time again with a
mobile enterprise solutions company. From being totally unapproachable,
I am now fully alert and on the ball – ready for anything. That’s the
liberation I feel from the prison that once held me. I’m happy for each
new task that I can accomplish.”
Pär, now aged 46, is already using his mountain bike
and will be back in the saddle of his motorcycle soon. He is his usual
social self again too, and speaks with so much energy that it’s hard to
keep up the note taking. “However, I don’t intend to attempt anything
that could be dangerous. I won’t be taking up parachute jumping for
example”, Pär assures us. “My need for kicks must not risk my health,
nevertheless, it’s great fun to once again face up to challenges,
although now I re-channel my energy more sensibly than before. It’s
also fun to socialise again – I have a great deal to thank my friends
and colleagues for.”
So it’s ‘full speed ahead again’. But it is not
uncommon for those who once suffered exhaustion and depression to end
up there again. Does Pär see this as a risk? “No – I now have my life
back and have promised myself and those close to me not to jeopardise
it again. That’s something we just cannot afford. I can no longer live
life constantly on the edge so I now take care of myself and that’s a
sufficiently positive feeling in itself.”
Pär has also changed as a person. He seems to have
become more receptive and responsive. His relations both within and
outside of his family are also deeper and stronger. “When you open up
to others and don’t just push yourself as hard as you can, you get back
so much more in return,” Pär reflects.
Previously Pär refused anything to do with alternative
therapies and treatment forms. Not today, though. “I attend cognitive
behavioural therapy, and not just to help handle my Parkinson’s. It
also benefits my own personal development and I have also begun
therapeutic yoga. The body has an enormous capacity for self-healing. I
thought that my life had ended at 45, but now I feel young and
productive. Others view me as normal again and I no longer feel ill. I
am proud to stand up and show others and myself that there is a way
back. Everyone has the right to a second chance.”
