WE MOVE
204 West 84th Street
New York, NY 10024
E-mail: wemove@wemove.org
wemove.org • mdvu.org
Never Give Up
With the help of family and special friends one can still live a good life, things change and you need to change with them, but that doesn't mean giving up
– Marie Taylor
I woke up on the morning of the 8th July 2001, with what I thought was a very bad back. I had trouble getting out of bed, even turning over was a nightmare. When I could stand it felt like a knife was going into my lungs with every breath I took. (I was 46 at the time)
I stayed in bed most of that day, and then the next morning got up to get ready for work, only I had no energy, I would not have made it to the corner, with my backpack. So I went back to bed, and slept again. I managed to get my chiropractor on the phone, as I had been having treatment for a bad back, and she drove down to pick me up and then worked on my back. She made the comment that I had a massive muscle spasm the worst she had seen in years. To even get in the car took 15 minutes, and after the treatment I felt no better, so she drove me home again, where I rang my GP for an appointment later that day. He had the same diagnosis, a massive muscle spasm going from my neck to the lowest part of my spine.
I did nothing but sleep for the next week every time my sister in law would ring me I would either be asleep, or just coming from the bathroom and getting back into bed. This lasted for 3 weeks, then I had had enough and tried to go back to work, I managed 3 afternoons, (I was a telephonist for a finance company) then when I had to report back to my GP on the Thursday, he touched lower down on my spine and my leg went on me, so I was off work, and I never did return to work.
It was around this time that the headache, pressure in the back of the head and the dizziness started. It got so bad I could literally sit and bang my head against a wall. The headache was at the front of the head, over my right eye but more towards my hairline. The pressure at the back of the head was the worst though. If I was to put my hand at the back of my head the area of pressure was bigger then my fist. It felt like someone was pressing with such force. All my doctor could tell me was that it was a migraine.
This lasted for weeks, and I got worse as time went on. Going back and forth to my GP was a nightmare, traveling on public transport. Then in early September of that year I started to have other problems, I could not walk a straight line, my right leg would go to the right not in front of me, It would take me 35 minutes to walk around the block that usually took me 8 minutes.
On the Monday morning visit to my GP’s I had been given an injection for pain, and told to rest before going home. I did that and walked out the door of the surgery, down the street and felt so funny, I then rang my husband and when I tried to talk I was slurring my words so much, I managed to catch the bus and he met me at the tram, only I was walking like I was drunk, (but as I never drink alcohol that was not funny), Hubby got me home, and I slept again, waking up hours later still with slurred speech, well I played tag with my boss on the phone, and when we finally managed to connect she thought I had suffered a stroke.
I now had uncontrolled movements in my whole body, my speech was slurred, and I would bounce on the balls of my feet, when ever I would stop walking, like at a bench or the stop lights while waiting for the green light to continue walking.
I met a wonderful lady, Doctor Helen Kouzmin in the April of 2002 and she told me I had Chorea movements, Dystonia, Ataxia, Restless leg syndrome, Bradykinesia, but the cause was as yet unknown. Four months later we reach a diagnosis, but I have no memory of June of 2001 in where I went on a holiday to Echucca, ( which is on the Murray River, the boarder between Victoria and New South Wales, in Australia,) but I do remember having about a dozen mosquito bites.
Dr Helen diagnosed me as an encephalitis survivor, and called it post encephalitic movement disorder, but requested I see a professor which I did 6 months later. He said that what I had was called meningoencephalitis, and prescribed another tablet called Madopar. I started this but unbeknown to me the dosage was halved which caused many problems, but it was eventually worked out, and I am now still on this medication as of April 2008. Though I am now at the highest dosage and will need to go back to my physian to work out a new medication as this one is not working as well as it did but that is what happens with this medication I have found out.
While on this medication I can do my craft-work, I am craft leader in the CWA in the town where we live, I do volunteer work at a community radio station, which includes 4 shows a week including a music and trivia show, I also write, edit produce the news that goes to air 3 times a day, this is done twice weekly.
