My story started the summer of 2009, with much discomfort in my eyes. January 2010 I had to stop working and was on sick leave due to extreme sensitivity to light and headaches. I was burned out.
I was examined for Sjögren’s disease, infection and different illnesses of the eyes without any results. My eyes became worse and my eyelids started to spasm. My eyes would just stay closed and I had big problems with getting around. I had to stop driving and I became very dependent of my family to be able to move around outside. I also had to use sunglasses both inside and outside.
I was despaired over my situation but I received a lot of help from the social system in Norway (NAV) and the Norwegian aid and assistive technology centre (Hjelpemiddelsentralen)
As a member of the Norwegian Association for the Blind and they came for a home visit and informed me of any aids I could apply for.
This is the help I received:
- New lighting in our entire house so I would not be blinded by the light.
- Sunscreen on the windows in the living room and in the kitchen where I spend most of my time
- A scale that would read out loud to use for myself and a scale that would read out lowud to use for cooking
- A machine that reads all types of letters, news-papers etc.
- New key board for the computer with larger letters
- White cane to use as an “information cane” and that was foldable
- A service in Norway called TT card that provides some free taxi
- Assistant to help me up to 4 times a week
- Accompanying certificate that allows a companion to travel for free when travelling with me
- Access to the Norwegian Association for the blind with access to a library for audio books with 150 000 titles to choose from.
I searched on the internet regarding what my illness could be and I found an article on Blepharospasm. Then I contacted my General Physician and explained my symptoms and what I had found on the internet. He did not think I had Blepharospasm but he referred me to a neurologist.
After five minutes with the neurologist he confirmed I suffered from Blepharospasm. I received treatment with botulinum toxin the same day. I had some improvement but I was far from well. The dosage of botulinum toxin was increased but then my eyelids drooped which made the situation worse.
I was wondering if I had to live like this for the rest of my life and decided to not isolate myself. I have participated in all activities that life has to offer, using sunglasses both inside and outside. People are very understanding when I explain what is wrong with me and I have been very open about this.
In connection with a 50 year Anniversary in my family we stayed at Olavsgård Hotel near Oslo in Norway. Sunday morning at breakfast my husband discovered that several other guests had tremor and that some had dark eyeglasses like me. We talked to a lady at our table and it turned out that the Norwegian Dystonia Association had their spring meeting there. What a coincidence!
She told us about a man that had received great help at Stavanger Hospital for blepharospasm. Anniken Hagen who was at the time President for the Norwegian Dystonia Association helped me with getting in touch with this man, so that I could receive information on the physician that he was treated by. Unfortunately I was turned down twice due to capacity problems. I then contacted Anniken who said she could ask her neurologist Charalampos Tzolis to ask if it was possible to get an appointment with him.
19 August 2014 started my new life after treatment at Haukeland Hospital in Bergen. I was injected with botulinum toxin in the eyelids, under and a little around the eyes. After two days I could open my eyes and keep them open. I have started to drive again and I can move around freely by myself. It feels fantastic and with this I want to thank the Norwegian Dystonia Association, Anniken Hagen and Charalampos Tzolis for all the help I have received.
Line Mathiesen
