Life with Parkinson’s – part 1

Parkinson's disease is a disease of the nervous system which is characterised by motion problems, stiffness and clonicity. The disease was first described in 1897 in the book An Essay on the Shaking Palsy, written by the British doctor James Parkinson. The source of the disease is still not totally clear and it afflict around one out of one hundred persons over the age of 60, the first symptom of disease usually appear after the age of 55 and is most common amongst men.

To start with the disease doesn’t cause any major problems, which means you can live your life as normal. It also means that your surrounding don’t perceive you as ill, but a slow and gradual worsening happen and people close to you can start to react…

svip.se met Mikael Nordh, who lives an active life despite his diagnosis.

When and how did your symptoms begin? And how did you get a diagnosis?

It started when I was walking my dog, I noticed that I was stiff or it ached in my left shoulder and I was walking with my arm folded towards my thigh. It didn’t oscillate as normal when you’re walking. I didn’t have a problem with my right arm but the left was sort of stuck. So I went to the medical centre and the doctor thought long and hard, and told me this wasn’t something for him and he was writing a letter of referral to Örebro and the neurological department at the hospital and see a doctor there.

The thing is that I was getting married and I felt that this could be something serious. And not to spoil our big day I postponed my doctor’s appointment to avoid a bad notification that would destroy our day. About that much I figured that this wasn’t going to be something good.

It took the doctor I saw in Örebro five minutes to diagnose Parkinson’s disease. My symptoms were so clear. It’s not a disease that you can diagnose with just a blood sample, the doctors diagnose you from your symptoms and how they change…

So you got married before your appointment?

Yes, otherwise everything would have been destroyed… But looking at my decision now, I think it was a wise thing to do.

Can you describe how you felt when you were given such a serious diagnosis?

Yes, first of all one gets very quite and your mind starts racing, then all these usual questions pops up; will I be able to function normally and all that but it’s all quite blank. You don’t know anything really. My wife at the time was waiting in the car and I don’t remember saying more than Parkinson’s when I got back in the car. But it was a difficult moment! Little by little questions like; will I be crippled and foremost how long will I be able to function normally, pops up in your head… It is difficult to predict your future since Parkinson’s is an individual disease. My doctor says that I will always have a relief in my tablets.

Photo: svip.se

Do you feel that you had good answers to your immediate questions from your doctor?

Yes, I think so. I feel that the doctor broke it down to such a level I could grasp and I had a feeling that it could have been worse! From the start I felt that I will be fighting and continue…

– I would like to say that the staffs at the neurologist clinic in Örebro are fantastic, says Mikael.

How long ago did you receive your diagnosis?

It’s about 16 years ago, so it’s been a while... The most difficult is to accept to one self that you have the disease and I haven’t fully accepted it yet. I would probably live differently if I did, take better care of myself. Maybe sleep more and perhaps think in a more egotistic way.

How much medication do you have to take in a day? If I could ask?

It is prescribed very strictly to every other hour. But when you are living such an active life as I do and have done, it doesn’t quite work properly. Since I am prescribed nine tablets a day and these are to be take with two hours in between.

What I mean is if I am awake more than 18 hours, it doesn’t quite ad up.
A situation where I would need more tablets than my doctor prescribed.
This is a conflict which is hard to handle and my doctor says I have to accept my illness and try to calm down. So I should really just sit down and eat my tablets every other hour and maybe I would function a lot better at home then but you can’t lock yourself in like that. If you are out and about as I did during 15 years, down in Iran for example with 16 hours work, 6 days a week, it’s something one shouldn’t do really to feel well.
Consequently my everyday life sometimes is a lot harder then what it would have to be. For various reasons I have chosen to live an active life and my doctor says that this might be the reason I’m not as bad as I might have been by now. With this illness one have to learn to accept the dip and to consume more medication is not going to improve things. Counter to what my doctor says and I reluctantly have to agree.

How has your diagnosis affected you as a person and I don’t mean the symptoms that Parkinson’s cause?

I am not the same person as I was before my diagnosis… I must take a tablet now…

We cut off the interview here as Mikael is experiencing a dip. When a dip occurs he gets very tired, stiff and things run in slow-motion. But this guy is not a person who gives up, after a few minutes the tablet’s kicked in, or it is rather Mikael’s stubbornness that makes it possible to continue the interview… We return to the question about how the diagnosis affected his life and if he’s the same as prior to his diagnosis?

I have always been a forward person, always wanted to join in and to do things. I am not one of them sitting on a chair and do nothing, on the contrary! I suppose this is what’s been hard to accept and… I don’t think I am any less as a person but naturally with these dips, I am different. When you are affected and the medication doesn’t work properly, you become stiff and immovable. You walk with short steps and people can really see that you are ill.

That part when it happens and you’re out in public is tough… It creates stress which is one of the worst factors and makes things even more severe. To expose one self to stress isn’t something to recommend and that’s what I have done to myself by being so active. Such situations I tend to walk into about 2-5 times a day, depending on if it’s a good or bad day and the dip may last from about 30 minutes, plus, minus five minutes up to an hour. Also food and sleep affects me. Since I still eat tablets and they are supposed to go through the orifice of the stomach, the orifice of the stomach must open up to be able to receive the tablets, and this can be a problem sometimes. Especially with protein-rich foods. So I should really eat a special diet, which I don’t do. Protein-rich foods are best to eat in the evening since the brain prioritizes the protein and then eliminate the dopamine.

I haven’t changed really and I live the same type of life as before my diagnosis. What has changed me is more to do with the side effects from the medications. Those are quite nasty side effects which creates a need of certain things… But let’s return to those later, since they are an important part to talk about.