“You could never know what it′s like. Your blood like winter freezes just like ice…”
This is how Elton John’s lyrics starts in his song “I’m still standing”. It is a love song, but this is not a love story, this is a short story of a “journey” I started 10 years ago.
It was the summer, 10 years ago, I had been noticing some changes to my body for a while. Nothing big. I had a small vibration in my thumb and sometimes I found it difficult to grab my keys in my pocket when I came home after work.
Come to think about it, it seemed that my right arm didn’t move as much back and forth as my left arm, when I was walking.
Well, to make this part of the story short, I went to my doctor who assured me that I shouldn’t worry.
To rule out anything serious, he sent me to a neurologist. When I finally got an appointment, it was more than 6 months away!
Luckily my employer for more than 20 years, FINN.no, had given us all a very good health Insurance and using that I had an appointment with a private neurologist, and we were on the task of finding out what was causing my difficulties, within a week.
The verdict
…or the diagnosis (I felt it as a verdict at the time) was ready after a series of tests. The neurologist said to me: ” You have Parkinsons Disease (PD)” and then we talked for a few more minutes before he told me that he had a new appointment coming….
FACTS
What Is Parkinson’s Disease?
Parkinson’s disease (PD) occurs when brain cells that make dopamine, a chemical that coordinates movement, stop working or die. Because PD can cause tremor, slowness, stiffness, and walking and balance problems, it is called a “movement disorder.”
You can read more about it her:
To the left is me in 2015, approx two years after my diagnosis
Foto: Caroline Roka/FINN.no
The neurologist was possibly good in his field of expertise, but not very good at handling people that just received life changing information and that went into full “fight or flight mode”
The only reference I had to Parkinsons was really old people shaking or walking very slowly with a stick and a back like The Hunchback of Notre-Dame.
My life was over – I thought…
I probably went into a depression, I lost weight and was generally down in my mood, but I still went to work as if nothing had changed.
My wife, Unni, shook me out of it – “you cannot keep on like this, you need to do something” and slowly I was getting up standing again.
In this phase I also informed my friends and a few of my closest colleagues about my diagnosis.
Talk to someone 1
As many men, I’m not good at talking about personal stuff, but through my employer I was able to use a psychologist who helped me sort out some of my thoughts about the future
I was also lucky to have a coach at work and she helped me to focus on and develop my manager skills and how I could deal with my diagnosis in my daily workLife changing information can be hard to handle. Make sure that you talk to someone
A couple of years went and then I felt the need to inform a broader range of people at work (again my wife had encouraged me for quite some time to do this).
A two-day meeting offsite in our extended management group at FINN.no became the opportunity.
Our HR Director Kristin Sætevik really understood why I wanted to use the opportunity, so I got a slot at the end of day one.
I told the story in the way that I know best – through a slides presentation.
My manager at the time, Kaija Ommundsen, summed it up as one of my better presentations
It was a very emotional moment where my colleagues really showed that they cared and that this did not change their view of me. And “SURPRISE” – many shared the challenges they had or had gone through with me that evening.
I think it made us stronger as a group.
- Talk to someone 2
- Tell your closest ones (your private life), but also do not forget your business life.
- Tell people what you are dealing with, and do it in a time and way that you are comfortable with
- This way you are in control of your story and people do not have to speculate and create their own stories about what’s the matter with you.
- You might be surprised, but you will have friends for life opening up. I know I have!
Accepting the future
Now 10 years have gone and I have accepted the future (at least for now).
The first years of PD is most often not very visible and most people would not notice anything. The medicine usually work well and the symptoms are easy to hide.
As the years go by it becomes harder to hide the symptoms as PD progresses and most people will have to do changes in their work life.
Did you know that
Parkinson is the fastest growing brain disease in the world?
There are no proven disease modifying drugs available ?
The main symptom-relieving drugs date back to the 1960’s?
I have been “lucky” so far, I still work in a 100% position, but I know it will not last forever.
In management, and of course in daily life as well, the principle should be: Treat everyone with respect AND always look at people for what they are and not what you think they are.
As an employer or colleague, do not underestimate the power you have to keep people like me active in the workforce. Some adjustments might be necessary, but I believe it is worth it!
I want to mention a few who follows the above principle:
Laila Dahlen is one of those I really feel has seen me as a person with capabilities and not a person with Parkinsons Disease.
Laila has several times after my diagnosis given me more responsibilities and challenges and she still hasn’t lost her confidence in me . In august last year, as the Chairman of the board in Nettbil.no , she hired me as the new CPTO of the company.
I will also mention Monica Hammer in HR who has been my supporter for years and of course Sara Andrén-Johansen who put a guy with PD in her management group.
There are many factors in play, but I’m confident that the including and caring culture of FINN.no and now Nettbil.no is a major contributor that I still work 100% in a challenging and inspiring job. This is really good for my mental health.
Under is a photo of me speaking at a conference in Amsterdam in May, you would not believe how good it feels to still be trusted as a valuable employee and to be able to share my knowledge despite my condition.
The future
Staying healthy as long as possible is not an easy task and exercise is very good for people with PD. It is medically proven that it slows down the progression of the desease.
For the first time, in November 2023, I stayed at Beitostølen Helsesportsenter (BHSS) – a magical place with magical people – for almost a month.
We where a group of people with young onset parkinsons disease (YOPD). They have become new friends and people to discuss common challenges with. These are all strong persons that I really respect!
We trained hard, 3-4 times per day, feeling almost as professional athletes.
Take a look at a few of them below, would you think differently about them when you know they have Parkinsons? I hope not, because these are strong and talented people!
Rune (yellow helmet) is a dedicated contributor to the Parkinson community.
Take a look at how he describes his new job
My stay at BHSS showed my that I can still do things to slow the development of PD. But I know it will come to an end at some point, probably sooner rather than later – I will try to enjoy the ride as long as my body is up for it .
The most important ones
“I wouldn’t still be standing without my wife Unni, probably the strongest woman I know.
I wouldn’t still be standing without our two sons, Fredrik and Sindre, two caring and wise young adults.
I wouldn’t still be standing without my closest friends – I think you know who you are»
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