Suzanne
Profile Information
- More about me (my health interests and reasons for joining WEGO Health)
- generalized dystonia since age 7, 2 thalamotomies at 11 and 12. right side very good, but left arm and leg give me problems. another thalamotomy at 25, no good. major foot reconstruction at 33. can walk pretty well now. having baclofen pump installed in a month or so, my neck gives me problems. also vocal dystonia, which i get botox for. love to bead and make jewelry. i do have some on consignment at various shops and galleries. married twice, with 2 boys-14 and 16. love to meet somebody else in similar situation-to discuss dystonia-am happily married! thanks
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You have a fantastic story. Thank you for sharing part of it with us. This is a fabulous group, and I'm so glad you found us all. :)
I don't have generalized but I have cervical dystonia. I had peripheral denervation surgery in 06 but it wasn't very successful. Also, botox, for some reason does not work. Very frustrating. I work as a nurse and had to have them make get me a specialized chair so that I wouldn't be in too much pain by the end of my shift. Seems to be working. I love to sail and hope to one day quit my job and head out to the south pacific with my husband. I have also been married twice. I have 2 boys 15 and 17. My second husband is wonderful and very understanding. If you every want to chat, I would like that. Anyway, cheers.
Debbie
i'd love to chat about coping with this fun disorder we all share. maybe not so fun but it can be quite funny at times.
I didn't learn anything about dystonia until i was diagnosed in 2005 aged 38, and around the same time we hooked up to internet and i was able to find all these people like me coping with alot of the same issues during their lifetime with dystonia.
we were a bit scared to get internet as we heard so many scary stories, but my sister and mum talked us into it and now we wish we had it heaps earlier. maybe i would have been diagnosed a little earlier.
having this disorder since age 3 but probably since birth , it was just noticed at age 3. we didn't know what i had then and i still went to normal school and just struggled with writing, but it was the writing i needed most especially during school cert, which i failed as i was too slow. In those days early 80"s noone really helped you sit them ,like they do today.
i struggled finding a job as i was really good at accounting but noone could predict my writing from day to day so i didn't qualify especially without getting qualifications. very hard time for me then accepting this as i always gave things a go but not every one has that confidence in you even if you yourself do.
I did get a job at a sewing factory and was there for 4 years until redundancy. they shifted all our factory to fiji as they were payed less and made them cheaper than nz.
i never got a full time job again but 3 months after redundent i got a part time job as a postie person, i loved it so much riding a push bike around town and finished by 2pm at the latest. and chatting to people waiting for their mail.
then 4 years later i met my wonderful husband because i prayed to jesus , could he send me someone as i was now 23 and a bit lonely and not in full time work but flatting on my own and managed to furnish my flat and had my motorbike skooter.
very quickly a month later i was turning 24 and this guy started hanging around, and i'd known him for 10 years at badminton, but never knew he liked me the past few years. one day we went to a tournament together and he says i really enjoy your company. i was quite amazed i hadn't clicked as everyone was telling me for some time he liked me. as he was a farmer out of town, i only ever saw him at badminton. but then all of a sudden as if jesus answered my prayer i kept bumping into him all the time. so i invited him around for my 24th birthday with a few friends, 2 weeks before my 25th birthday we were married.now we own kiwifruit orchards which was a dream of mine since i first saw rows and rows of kiwifruit on holiday at 16years old,with mum and dad, my husband and his family and i moved to kiwifruit when i was 26. now at 42 i couldn't be more happy with my hubby and 2 children who love kiwifruit life too.
god does look after us and it's true he has plans for all of us if we just ask.
I noticed that you hadn't yet joined the Dystonia Forum here on WEGO. You can do this by clicking on the "community" tab up above, then scrolling down to the groups ... The Dystonia Forum is the one with all the members :) with the pretty purple flower, click on that and from there you can join the group.
So happy that you found us here. Like the others have said below, if you need any help or have any questions feel free to ask away.
Robin
I always wish for a new side. Just cut me in half and give me a new left side!!! Crazy huh?
Thanks to Robin I am a bit more active on boards. I stayed away for a long while due to fear and stress. But I do hope to get to know you better soon. I also woudl love to see some of yoru beading!!!
Take care and have a great day!
CindyLyn
Please let me know if I can help you around the site etc. I look forward to getting to know you!
Ellen Schnakenberg
visit my Blog