My short story living with Parkinson disease in Iceland.
My name is Vilborg , I’m 55 yeare old and I have PD. I’m marryed with 3 children 2 grown up and 1 is 17 still living at home, we also have 5 grandchildren.
I live in Iceland, and I was diagnosed in desember 2015, it was big shock and I was full of shame and anger. My mom has PD and never in a million years did I think of Parkinson when I started to have a problem with my left arm. In Iceland the only live 350.000 people and estimated number of people with Parkinson‘s is around 700.
Right after my diagnos I started to take levodopa , and I felt better in my body right away.
But I was were angry and as I said before… full of shame , the work didn’t go so well and the live was different and I was unhappy.
Then I called old friend of mine, I did know that he had been diagnosed with PD several years ago I asked him if we could meet he said yes, we met and talk for 3 ours!!! that was wery nice of him and good for me.
He told me about Reykjalund that is a rebab in Iceland, and when you get diagnosed with PD you can ask your doctor to apply for you.
I was wery lucky because I didn’t have to wait long, and l don’t now why.
The waiting list are long and they only take 40 persons in per year, and in Iceland 70 persons are estimated per year. Some people have been waiting for a long time but I only waited for a 3 month. That was my luck.
In Reykjalund you stay for a 4 weeks in a group with 6 or 8 other PD people and they try to find people in same older .You meet doctors and they make a plan special for you, every day you go to a physiotherapy,Occupational training, you met psychologist, you learn to relax and you meet another people with PD.
The stay at Reykjalundur changed everything for me, and I wish that everyone with PD could go there and get help.
Now 18 months have passed sins I got the diagnosed and the days are up and down. I go to my PD doctor 4 times in a year and can call him if something is bad. I have slow down the work and I train a lot I bicke on my training bicke for 30 min every day l go to yoga 1 in a week I walk in the mountain and I try to do everything I like and makes me happy.
l know that training and medication are very important 50/50 And I have to take care of me self.
I don’t feel ashamed anymore and I’m still learning to live with this. It’s a bad disease and many people are suffering a lot.
In Iceland we have a PD organization and the members are 500-600 people I’m a part of this membership and I’m working with them.
We have a big dream about getting our own clinic there PD people can come and get therapy and help with live.I hope that we will have that sooner than later.
In November 2016 I started to work with radioparkies , Im a DJ and I broadcast 1 in a week.
And that is wery important for me and I really like it. Then in mars 2017 me friend started to broadcast with me and that is great. Let your voice be heard !!!
My live is changed and some days are bad but I got more good days than bad. I believe that within 10 years there will be drugs that slow down the disease and tills then I will do my best to stay strong and healthy .l now that I can and will have a good live with my husband and family how support me in every step I take.
I have learned a lot in this time, something good something not as good, and I have made many new frends with PD and witout PD.
Now in this moment I’m in Spain with my husband walking in the mountain and that is a big challenges, but I can and will.
My live motto is:
Live in the moment you do not know what happens next, you have no script.
Elisabeth Ildal - Lokalpolitiker, AMBASSADØR & BLOGGER for The World Parkison Coalition 5th World Parkinson Congress Kyoto (WPC2019),Virksomhedsejer, Jurist, Foredragsholder, Coach, #Radioparkies, #Cure4Parkinson, #EPDA, #ParkinsonsM, #unitedforparkinsons - et godt mix!