Summer went by quickly at Kinkomaa (in the middle of Finland). They had given me a computer mouse that was attached to my forehead, and I was able to move and click it with my eyes. I got to practice with the computer every day, and I was really lucky as I was assigned a personal assistant, who helped me for a few hours every day and took me to the courtyard, to have some sun.


Came fall, and I moved back to Käpylä, Helsinki. Everything had changed, to even better than it was! The most important change was that I had a new neurologist. I had a clear vision about how I would be able to move back home. I talked about this with the neurologist every time we met, and I sent her an email after email. Sometimes stubbornness pays off; my neurologist took my ideas seriously, looked into different options, and finally put together a group of people who would help me accomplish my mission.


The group consisted of a neurologist, psychologist, physical therapist, occupational therapist, social worker, and nurse. We all together planned and executed a plan that had only one focus; help me move back to my home and live there safely with hired help. It was a long process, and I’m so grateful to everyone involved. They did a wonderful job. As for me, daytime I did different kind of exercises, night hours were reserved for surfing the net and planning the steps of my return to home. I had all the professionals to help and guide me, but I wanted to have the last word and be in charge of all the steps, of how my life would continue from here.


My focus in physical therapy was my legs. I wanted to have enough strength in my legs so that daytime I’d manage with only one helper. Getting up, standing, testing a wheelchair that would fit me the best, that’s how I spent my days. About the wheelchair, that almost became an issue. They made me learn to use a motorized wheelchair. I remember a burst into tears when I saw the first model. I was supposed to put my lips on a ball and that way drive the chair. Disgusting! I refused to suck the slimy ball and made myself very clear. I will call the president, if I have to, but they can’t make me do it. Their idea about the chair was that I’m more independent if I run a circle on it… Right. I know the logistics of my home town, and in my mind the chair made no sense, no sense at all. But I kept the therapists satisfied by using a chair that I can drive by moving my neck against the support. You`ve got to give them something.


The purpose of the speech therapy was to prepare me for eating blended food. I also got a board with letters on it, made of plexiglass and personalized for me. That was to help me communicate. I got to choose the size of the board and the order of the letters. I wanted something on the small size, something that would be easy to carry along, with most used letters coming first. Already in Käpylä I had noticed that the older nurses had no interest in learning to use the board. That made me angry, and what do you know, suddenly I had a group of young nurses taking care of me, and they had no problem communicating with me. Another vital issue in speech therapy was to improve the use of computer and the mouse attached to my forehead. I was really happy with the equipment I was given, and month by month I was a faster writer. This was a way to keep in touch with my loved ones and my friends, but I have to say there was not much time to send emails. I was so focused on my return to home.


The social worker did a tremendous amount of work, because there was a huge number of questions, understandable, by the city of Saarijärvi (in the middle of Finland). At that time I would be only the second person (the first woman) in Finland who would allowed to move back home in the same condition as I was. Bureaucracy has no mercy, but patiently we processed a whole new kind of way of living in Saarijärvi that would able me to live home with three regular assistants. There were doubts, but I chose not to listen and focused on my plan. I wouldn’t take it that strangers would plan the alterations in my own home, no I was the only one to know my home and my needs. I didn’t stop till I got what I wanted, and I made a very detailed list of things that can be done in my home. None of the experts in my case didn’t dare to challenge me; they knew my home is my castle. I put the city of Saarijärvi in an awkward situation: I was the first case of this kind, and not much help and advice were available anywhere in Finland. I had to fight for my needs, but this one wasn’t an issue most people might think of first. My point from the beginning was that I don’t want anyone to spend the night with me. A visit or visits by a night patrol of nurses would do. We were butting heads about this, but finally I got what I wanted. Someone would come by twice a night to turn me. Now I’m down to one visit a night.

Continues…

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