Life with Parkinson’s – part 2

Svip.se has previously written about Mikael Nordh who lives an active life with his diagnosis Parkinson’s disease. Here we continue our heart-to-heart interview about the illness, side-effects, belief in the future and Mikael’s joy of living. Here’s the continuation!

Your medication, how quickly does it work?

I have quick-acting tablets to resolve in water which are complementary if I for example am out and about and get a dip. As an addition there is a depot, a capsule which is melting in my stomach and which I take at night to be able to relax and sleep better. This is to be handled strictly on the hour and I try to do so. Naturally everything is affected by how my day is and the amount of hours I am active.

Is there a converse to your dip?

Yes absolutely. It is when the medication accumulate and doesn’t get pass the orifice of the stomach and when you take another tablet, the first one that’s been waiting there might tag along and will give a double effect. That is called hypermobile, maybe you’ve seen it? I get floppy and oversized in my entire body, almost like I am under the influence…
There’s a trick to get the orifice of the stomach to open up; if you eat a biscuit or drink something with carbonic acid in connection to taking the medication that will do the trick.

You mentioned the side effects earlier…

The side effects can hit hard in life. Foremost they come as an over consumption of some kind and way. These side effects don’t afflict everyone, but still a few.

Foto: svip.se Kläder: Headbanger Tattoo

How do you handle your side effects?

Well it’s not much to handle, they are there and it’s just to accept them.

Still you are as aware of them to bring them up in conversation…

Yes but I believe it’s the first time I actually talk about them…

The side effect Mikael is talking about is for example; shopping mania, gambling and an increased sex drive. The over consumption give a feeling of well being. It is the medicinal preparation that increases the levels of dopamine and probably causes these behaviour disorders which give a lack of impulse control as a potential side effect. More common side effects are decreased appetite, nausea and fall in blood pressure. In a more advanced phase of the disease, hallucinations can occur.

– Different individuals experiences different problems and rarely or never all at the same time. There’s very much hush-hush around these side effects, which I think is wrong says Mikael.

You are an active person, how do you balance your everyday life with your illness?

Actually I don’t balance; I think I might have increased my activities. I try to keep myself busy and out and around people as much as I can.

Sleep is incredibly important and sometimes this creeping, jittery feeling occurs when I am going to sleep. Then I have to get up and move around, and sometimes I can’t sleep at all.

When I don’t sleep as much as I should, the next day is most likely destroyed; this has also to do with the acceptance. I don’t accept my illness but rather accept the dips and that people might think that I look weird and wonder about me. It’s important to me to be able to keep going when I can, sometimes things take a little longer and then it’s good that people know why and the pressure comes down a bit.

Since a while back I am on full sickness benefit and that means that I can choose if and when I am active. This have given me the possibilities to function in a different way to when I was employed and forced to got to meetings and work even during my bad days, it’s the difficult days that are the toughest mentally but also physically. Now I am able to chose when I’d like to make my contributions. I have chosen to be active in different ways.

Your illness doesn’t show immediately, how do you get treated?

I usually tell people straight away, especially if I see that they are watching me, I chose to tell them. Partly because I don’t want people to wonder and partly since it take away the pressure from me. I can see how people are looking at me and wonder; what’s wrong with him? Then I tell them I have Parkinson’s disease and then it’s the end of things! Naturally I don’t want people to think that I am under the influence of alcohol or drugs, it has happened that people who doesn’t know me thought so…

What reactions have you received?

People are generally asking if they can help in any way and show a good understanding, which is great. I feel that people make time despite the stress in today’s society; it’s really nice and gives me a certain amount of security, just to know that I am not alone if something would happen.

How would you like to be treated?

Ask if you can help, be there and show that you care and behave calmly to show you’re not in a hurry. But don’t ever say: I feel so sorry for you!

What I would like to mediate is what you can achieve, despite Parkinson’s disease if you have the right attitude and mind set. You can live quite a normal and active life, things just take a little longer and lots of energy off course. Parkinson’s disease doesn’t have to mean goodbye, naturally one is worried about things to come but it’s the same for all of us. Parkinson’s or not, we’ll never know what’s to come, so there’s no difference. Just live your life in full!

Svip.se would like to thank you Mikael Nordh for sharing dips and high’s of your everyday life, and for in a charismatic way and with a positive outlook on life shed hope and joy to others in your situation. But foremost for in a good way tell us “healthy” about how to treat you, related and others with the diagnosis Parkinson’s disease…