I believe I have quite extensive experience, and therefore knowledge, of Parkinson’s disease. I was diagnosed in August 2006. I was 60 years old at the time.
After a period as a member of the Green Wave movement in Hälsingland, I had moved back to Stockholm. My time as a Hälsingland resident became longer than planned — 33 years, to be precise. We enjoyed it there, but had decided that as retirees, we wanted to live in Stockholm.
After working as a district nurse in Söderhamn for around 20 years, I changed direction. I completed a Master’s degree in Caring Science. We moved back to the stone city in April 2006. I had expected to get a job in healthcare, but it proved difficult to find new employment. The National Board of Health and Welfare can only be pitied. They never understood what they were missing out on. The unique competence I had. A slightly older former district nurse with a fresh Master’s degree in Caring Science. Hard to beat, I thought. But it did not help.
So I remained loyal to Gävleborg County Council. I lived partly in the summer cottage in the Söderhamn archipelago and partly commuted daily between Söderhamn and Stockholm.
The idea was still that I would get a job in Stockholm. If I was not offered a permanent position, perhaps I could step in during mass vaccination campaigns, for example.
But hardly anyone seemed to agree with me. Instead, other forces were at work.
The spring before the moving van went to Stockholm, I had visited my healthcare centre because I was having some problems with my neck. I thought I had spent too much time in front of the computer. A bit of ultrasound and everything would be fine. But my doctor and I had different views on that. She wanted to refer me to a neurologist.
I was called to the neurology clinic at Södersjukhuset in August 2006. I had barely sat down before I was told that I had Parkinson’s disease.
I was also told that despite this, I might at least have five good years before Parkinson’s completely dominated my life. Something the doctor immediately took back. “Comfort for a tiger heart,” as she put it.
I was put on 100% sick leave straight away. This sick leave eventually turned into what is known as sickness compensation, until it was time to start drawing my pension.
During my illness, I have never been in contact with the Swedish Social Insurance Agency, neither directly nor indirectly. The systems have simply succeeded one another smoothly. I have heard horror stories about how it can also be. Anything but smooth.
I did not need to make use of the Swedish Social Insurance Agency’s services. Nor did I now need to commute between Söderhamn and Stockholm in order to live in a summer cottage in a deserted holiday-home area during dark evenings when the autumn storms were at their worst. That actually felt somewhat positive.
A great deal has happened during the 19 years that have passed since I received my diagnosis. I have held various positions of trust. I have participated in research studies and different group activities. I have met pleasant and interesting people. I have had the opportunity to travel.
I, along with many others, have described how much positive has come out of the Parkinson’s diagnosis. It is almost as if it has been better to be ill than healthy. Somewhere around there, the feeling of self-deception begins to make itself known. Honesty with oneself. The admission that Parkinson’s, quite frankly, is a terrible diagnosis. Something I would not wish upon my worst enemy.
It is also a diagnosis that does not follow fixed rules. Just when I thought I had seen a pattern in the relationship between being ill and feeling well, everything was turned upside down. The pattern did not hold. I cannot say that if I take this or that amount of medication, I will react in a certain way. Or that if I do something stressful and demanding one day, I will pay for it the next. That may happen, but it does not have to. The only thing that is certain is that everything is unpredictable.
The insight and self-knowledge that I believe I have gained through a long relationship with Parkinson’s has turned out to be rather fleeting. Right now, Parkinson’s seems to have the upper hand.
But the final word has not yet been spoken.