"But it is my life."
There was a carpenter at work. He was leaning on the fence looking at me.
I said to him - "I see you are looking at me! If you are wondering, I have Parkinson's"
After a while, he said - "I don´t care. I just think you are beautiful"
He saw me as Lena with Parkinson´s, but
I saw myself as Parkinson-Lena. The one I do not want to be.
He really pulled the rug from under my feet and so now when I see people looking at me,
I think to myself that they are looking because they think I'm beautiful. Then it feels a bit better.
People are constantly stressed. We are always in a hurry. This does not work well for people with Parkinson´s at all.
The first time I froze was in a rush hour crowd as I was getting off the commuter train in Stockholm.
I couldn´t move. I just stood there and people almost knocked me over.
It is really difficult to walk. Sometimes I can´t walk forwards but I can walk backwards.
Once when my husband and I were out to dinner, we walked arm in arm.
I faced backwards and he forwards. People stared at us and probably thought we were crazy, but it got us home.
Everything is easy when you can do it. But to button a button can be so
difficult and so miserable and frustrating when you can´t do it.
I had a good friend who also had Parkinson's. When he was at his worst, we had a debate on Facebook about what a worthy life is.
Sometimes when I am stiff like a board, I feel that if this is what life is going to be like all the time, then I don´t want to live.
But on the journey you become wise as well. Parkinson´s is not just crap and misery.
If I could make a wish, I don´t think I would wish not to have the disease,
because I think my life is quite OK anyway. There are other values in life.
My husband is not much for the healthcare system. He does not like to come with me to the doctor
but he is absolutely fantastic at home because he makes me laugh.
And we laugh in our worst moments too, and it's so liberating and wonderful to be able to laugh.
Life then becomes a little easier.
But you have to fight for your rights.
You are entitled to a good life and there are many treatments.
Sometimes I think of those who do not have the strength to fight for their rights. What kind of health care do they get?
It should be the same for everyone I think, no matter where you live.
It is very important to have knowledge about one's disease.
Once my mom said to me "Come on Lena, listen to what the doctor is telling you!"
"But mom it's my life. It's my life and I'm entitled to it like everyone else
and that is why I have to have demands.
You can´t just put people aside like that". Everything is a struggle.
You must be aware of what is happening to you and around the disease and treatments.
When you are in need of help and how to get help. Many times you have to fight for your rights yourself.
Around 20 000 Swedes have Parkinson´s disease.
A neurological disease affecting movement and mobility, but also sleep, cognition, speech etc.
Join the movement! #UniteForParkinsons
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