“Is Parkinson’s contagious?”

The apple of my eye is a 4 ft tall, 45 lbs creature with brown-green eyes and blonde hair, a very strong will and views of her own (I really can’t understand where she got those, I still have mine left…). Her name is Frida, she turned 7 last January and she’s my biggest fan as well as I’m hers. I dread the day she becomes a teenager, considering the clashes of wills that have already taken place while her loving father and my darling hubby tries to avoid ending up with permanent tinnitus from the loud noise. Frida is quick, both in body and mind, she loves to run and climb and she collects things whenever she gets a chance. If I hadn’t given birth to her myself, I’d think she was a squirrel… a  very large one… with no tail…

From Frida’s point of view, I have always had Parkinson’s, it’s a natural part of her life, for good and bad. I have never tried to hide anything about it from her, she sees me take my medication and we talk openly about PD at home. No wonder that she has questions at times and wonders about this ”thing” that makes her mother so tired occasionally. One morning when she was about six years old, we were getting ourselves ready to go to daycare and work, respectively, and she suddenly asks me: ”Mummy, is Parkinson’s contagious?”. I stopped what I was doing and realised that today we might be a little bit late, because this was something we had to talk through. I realised that she must have heard about Parkinson’s disease and figured that most diseases are contagious, so could she get Parkinson’s from being around me??? We sat down and had a long talk about what PD is like, how they don’t really know why some people get it and other’s don’t and that clever people all around the world are trying to find a cure. It was one of those moment that I will remember for a very long time.

About six months later, Frida and me were on our way home from school and out of the blue she says: ”Mummy, I’m so glad you got Parkinson’s!”. I thought: ”f*****g hell, my daughter has completely lost her mind!”, but managed to transform it into a neutral enough: ”Oh, how do you figure that?” ”You see Mummy”, she said, ”if you hadn’t gotten Parkinson’s I wouldn’t be friends with Annika!”. Annika is one of my ”PD-buddies”, she turned 50 last year and she and Frida really like eachother. You can imagine how glad Annika was when I told her what darling Frida had said…

So, at the end of the day, Parkinson’s is not contagious but it can give you new dear friends to the whole family.

Optimistic realist with Parkinson’s

Parkinson’s is an incurable chronic neurodegenerative disease. None of these words is even remotely hopeful or positive. The good news is it won’t kill you, but then again, not even Michael Jackson turned out to be able to live forever, so I guess the odds are against all of us on that point as well.

Considering this, people often comment on my being so happy and positive most of the time. You might think it comes from ignorance of the disease and what my future might be. Or maybe you’d think I’m applying the ostrich-method of sticking my head in the sand and refuse to see the truth of my situation.

Well, those of you who already know me can tell those of you who don’t, that neither of those are ”the Sara way”.  In fact, the more I read and learn about PD, the more positive and hopeful I become.  I like to call myself an optimistic realist (or realistic optimist depending on my mood for the day).

The optimism comes from my conviction that the research done on our behalf is really making progress and that new treatments will come and eventually (probably within the foreseeable future)  the long awaited CURE.

The realism comes from the realisation that it’s up to me and me alone to make sure I keep fit enough and positive enough to be prepared and in shape for the treatments to come.

Consequently, I would like to modify my first sentence into:

Parkinson’s is a presently incurable chronic neurodegenerative, but manageable, disorder that is best handled with generous amounts of humour and what we in Sweden call ”jävlaranamma” and in Finland would be called ”sisu”. (translates into something like ”stubborn as the devil”).

On a tightrope – Life is a balance!

When I was 13 or 14 years old I realised that my body wouldn’t always do what I asked of it. I’m not sure what I noticed first.
Was it that sometimes when I was riding my bicycle I had a very hard time keeping my balance?
Was it the way my right shoe was worn down under the toe in a strange way because I wasn’t able to lift it properly when I walked?
Was it that I could not keep the rhythm of the music with my foot?
Or was it when my mother asked me why I didn’t swing my arms when walking?
I really don’t know, but with time I discovered more and more things that I just couldn’t do.
Nowadays all teenagers seem to compete with each other about who can be the most different and get the most attention. Or maybe that’s just me getting old…
When I was a teenager, it was the 1980’s. By the way, how come that the clothes and hairstyles from the 80’s are absolutely ridiculous when the music from the same time still is the best ever made….?
All I ever wanted as a teenager was to be normal, like everybody else, not different…. (well, that’s not entirely true, I also wanted a dog, a boyfriend and a moped, not necessarily in that order…). But all the time I knew I wasn’t like everybody else. It was not an easy period in my life, but then again, can anyone show me a teenager who thinks the sun is always shining… (and two out of three is not bad…)
That was my first encounter with Parkinson’s Disease but neither me nor any of the doctors I saw knew that.
For different reasons I didn’t receive the diagnosis Parkinson’s until October 2003, some 18 years after my first symptoms.
It was a hard blow being diagnosed with Parkinson’s Disease at age 32, although probably less hard than it would have been at age 14 or 15. Our daughter, who was 10 months old at the time and was starting to learn how to walk probably has a lot to do with how I was able to go on with my life.
In September 2008 I went to Spain on an education and training course specializing in people with PD. Those ten days focusing on myself and strategies for handling PD made a big impact in my life. I returned to Sweden as Sara version 4S: Stronger, Smarter, Swifter and…. Sexier…
The biggest impact the trip had was giving me the opportunity to really overcome my difficulties and learn my uncooperative body a lesson. Thanks to generous amounts of pure and strong Viking stubbornness and the lucky presence of the right equipment I actually managed to walk a tightrope!
I know what you’re thinking now: “she’s clearly under the influence of something completely different pure and strong…” . For you non-believers (and the rest of you as well) I can only say: Check out the video clip below! It definitely ranks among the seven proudest seconds of my life. It’s not graceful and not very beautiful, but I get the job done!
I did learn a lot on that trip but the thing that most changed my outlook on life was that even though I can’t walk on water I now know that I CAN learn how to walk a tightrope!
And I’m not stopping there… follow me here if you want to know where I end up…