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Parkinsons forum

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1 bravery on 13/11/2009, 9:37 am

Ann

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Bravery - I dont think it came into it as far as I was concerned. I had nothing else, no alternative and this made the decision to go ahead with the op an easy one. Plus I was keen to make sure I didnt leave it too late, and I WANTED MY LIFE BACK - even for just a while. I never thought I would be here six years later just as good if not better, but everyone is different. I can't say to you to go on and have it; I can't say to you not to have it. All I can say is if you have read up on it and know what is involved and then say no, then no one can say anythng - an informed decision. Sorry if this sounds like a lecture, but I am remaining neutral I hope!!

Mammy slamming on the brakes - a great description!!

http://www.parkinsons.ie

2 Re: Parkinsons forum on 13/11/2009, 8:33 am

lucy

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If my neuroligist had his way I would be having the op tomorrow but I would not be brave enough. When I started sinimet plus I was told I would get a good 5 years I got 5 months then I went on to stalevo but I never knew where I was with them and then they were causing terrible movement so now I am on the pump but can still freeze the odd time especially in doorways. The standing joke in our house is keep about 2 yards behind mammy in case she slams on the brakes

3 How am I doing on 24/10/2009, 10:16 am

Ann

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Lila, I can go into more detail privately, but I have had PD now since the mid 1990s and have had DBS, and it was very successful.

I was one of the better results - most all see an improvement - a considerable one - but not to perfection (which is what we all want), and I am in very good shape. Still taking high doses of medication but not Sinemet which I couldnt tolerate, and so am not bothered by fluctuations, just a bit of freezing in narrow spaces, especially in the dark. And there Once I can hold on to something for balance I can get by. The PAI have a good leaflet on freezing with lots of tricks to try, well worth a read. Phone 1 800 359 359 in Ireland for a copy. It will be available online soon. (Freezing is not being off, just stuck to the ground unable to initiate movement)

The operation itself was done in Bristol, in Frenchay Hospital under Prof Steven Gill, so I was asleep for it - the other centres do the op while you are awake. Google Medtronic who make the equipment and you will learn more about it. Sadly not yet available here...



Last edited by Admin on 9/11/2009, 11:59 pm; edited 1 time in total (Reason for editing : Adding)

http://www.parkinsons.ie

4 Re: Parkinsons forum on 21/10/2009, 11:09 pm

lucy

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Hi
I wonder could I ask you how you are doing after 10 years ( I will understand if you dont want to discuss this on the forum)
Lila

5 A new forum on 21/10/2009, 10:28 am

Ann

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Lila, there are plans to develop the interactivity even further! We DO need somewhere to talk and I find talking to others, especially those who have had Parkinson's a long time but are still doing well, very reassuring. My kids were older and I was about your age - the same age as you - when I was diagnosed. That was over a decade ago. Like a Star @ heaven

http://www.parkinsons.ie

6 Re: Parkinsons forum on 21/10/2009, 8:21 am

lucy

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HI
I was diagnosed with parkinsons 6 years ago at the age of 42 although I knew there was somthing wrong for about 3 years before that. My children were only just turned 3 and 7. Iv'e been watching out for this forum for a long time now, hopefully alot more people will join.
Lila

7 Re: Parkinsons forum on 20/10/2009, 9:13 am

Ann

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Lila you are welcome. Come back when you want!

http://www.parkinsons.ie

8 Parkinsons forum on 19/10/2009, 6:45 am

lucy

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Hi
I am only after discovering this forum and now cant think of anything to say but tomorrows a new day
lila

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