Thanks to all those who have encouraged me to keep blogging. I received lots of emails from friends both with and without PD, from here and from overseas.
It's those with PD who really spurred me on.
I apologise to those who tried to post comments here; I have posted them under my name, and if you continue to email your comments, I will continue to post them.
My posts will be irregular, as I will only post when I have something to say, so the best way is to subscribe by email, if you haven't already; that way my posts just come into your inbox, and you don't have to keep checking the blog.
Finally, I'd really like to hear from the people who I know read the blog from other countries, but I don't know you; don't be shy; I know you're there!
Karyn
karyncurly@hotmail.com
People have known me for my adventurous travels. 2011 sees me on a quite different journey.... My Deep Brain Stimulation or DBS Blog.
Thursday, September 22, 2011
Wednesday, September 21, 2011
Personality Disorder???!!!
Yesterday I went to the neurologist to be tuned again.
My main concern was my 'turned in' left foot.
Though not painful, I was keen to fix it to halt any bad habits which may result in poor posture or balance.
A?Prof Williams turned me up to 1.8 on my left side, and 2.0 on my right side; the first time both sides were not the same.
Apparently the 2 probes each have 4 electrodes at the end of them, which can be adjusted in 4 different directions.
They were adjusted too,
I was asked to wait 45 minutes to see how things settled, and sent on my way to a restaurant in Toorak Rd for a friend's birthday. After that I went across the road and purchased 2 pieces of clothes.... a black dress, and a top to go over it.
For those foreigners who are reading this blog, I must point out that Toorak is Melbourne's most expensive suburb, and not one that I usually shop in. Save that info for later....
I came home, had a rest and got up....that's when the fun really began.
I felt restless. I couldn't concentrate on my book, (Lovely Bones), or the computer, or seem to cook dinner.
At wits end, I decided to walk Molly.
I walked up the street to my my friend Ros, and gave her a big fright.
I was acting vey strangely. I was speaking very weirdly. Though aware that all was not quite right, I don't think that I was aware to the extent.
I rang Yon, and told him that something s wrong.
He had just turned off the freeway, and would be another 20 minutes.
Meanwhile, Ros was trying to get me into her house, but I refused.
I took off with Molly to meet Yon.
I finally met Yon on Neerim Rd and jumped in the car.
He was worried as Ros had rung to alert him of my strange behaviour.
We got home, but I took off with Molly, and Yon had to chase me.
Finally home, I tried to concentrate on dinner. I needed help.
By now my behaviour could only be likened to a happy drunk.
I was loud and saying silly things.
My 25 year old son was bemused, but worried.
Yon insisted that the outfit I'd bought earlier was impulse buying.
Anyway, after dinner, Yon turned the voltage back down, and I settled down.
I took the serroquel for the 1st time in 4 days, as I'd got to sleep at 5.30am that morning.
I had a good night's sleep, and Yon rang A/Prof Williams in the morning and he suggested I turn down the stimulater further.
I was fine today.
Conclusion? I don't think that my body can tolerate large increases of voltage; better to increase gradually.
And the outfit?
Well, I really am due for some new clothes... What do you think?
My main concern was my 'turned in' left foot.
Though not painful, I was keen to fix it to halt any bad habits which may result in poor posture or balance.
A?Prof Williams turned me up to 1.8 on my left side, and 2.0 on my right side; the first time both sides were not the same.
Apparently the 2 probes each have 4 electrodes at the end of them, which can be adjusted in 4 different directions.
They were adjusted too,
I was asked to wait 45 minutes to see how things settled, and sent on my way to a restaurant in Toorak Rd for a friend's birthday. After that I went across the road and purchased 2 pieces of clothes.... a black dress, and a top to go over it.
For those foreigners who are reading this blog, I must point out that Toorak is Melbourne's most expensive suburb, and not one that I usually shop in. Save that info for later....
I came home, had a rest and got up....that's when the fun really began.
I felt restless. I couldn't concentrate on my book, (Lovely Bones), or the computer, or seem to cook dinner.
At wits end, I decided to walk Molly.
I walked up the street to my my friend Ros, and gave her a big fright.
I was acting vey strangely. I was speaking very weirdly. Though aware that all was not quite right, I don't think that I was aware to the extent.
I rang Yon, and told him that something s wrong.
He had just turned off the freeway, and would be another 20 minutes.
Meanwhile, Ros was trying to get me into her house, but I refused.
I took off with Molly to meet Yon.
I finally met Yon on Neerim Rd and jumped in the car.
He was worried as Ros had rung to alert him of my strange behaviour.
We got home, but I took off with Molly, and Yon had to chase me.
Finally home, I tried to concentrate on dinner. I needed help.
By now my behaviour could only be likened to a happy drunk.
I was loud and saying silly things.
My 25 year old son was bemused, but worried.
Yon insisted that the outfit I'd bought earlier was impulse buying.
Anyway, after dinner, Yon turned the voltage back down, and I settled down.
I took the serroquel for the 1st time in 4 days, as I'd got to sleep at 5.30am that morning.
I had a good night's sleep, and Yon rang A/Prof Williams in the morning and he suggested I turn down the stimulater further.
I was fine today.
Conclusion? I don't think that my body can tolerate large increases of voltage; better to increase gradually.
And the outfit?
Tuesday, September 20, 2011
6 Weeks on...Fine Tuning.
This entry will only be up for a few days. I suspect that few are checking the blog now; I asked for feedback, and received it only from friends.
But in case there's any one curious as to how I am at 6 weeks... here goes.
A/Prof Williams and I are still fine tuning.
I have control of the stimulator to a point; parameters are set.
Just to confuse me, there are two modes; A and B. I am up to 1.0 on B (original mode), and 1.6 on A (new mode). Last week, when I hit 1.5, my left foot turned in, making walking uncomfortable; but NOT painful, so I stopped.
I am now taking MUCH less medication. Besides stopping Sifrol (Mirapex), I no longer take any Madopar.
I just take Stalevo 4 times a day, and one Symmetrel.
Also, I have stopped the Serrequel completely, because I did not like the vivd dreams I was experiencing.
Unfortunately, I am not sleeping as well as I was.
Other than that, my movement continues to be still, and my friends notice a great improvement.
I can finally drive (hooray!), and hope to mount my bike next week as Spring weather hits beautiful Melbourne.
I'm off to A/Prof Williams today, where I hope that my foot issue will be resolved, and Molly and I can enjoy some walks together.
I still wear my wig when out, as my hair has not covered the scar yet.
If you want me to continue with sporadic updates, please email me and let me know, or else I will assume that I am talking to myself, and no one is reading this any more.
Karyn
karyncurly@hotmail.com
But in case there's any one curious as to how I am at 6 weeks... here goes.
A/Prof Williams and I are still fine tuning.
I have control of the stimulator to a point; parameters are set.
Just to confuse me, there are two modes; A and B. I am up to 1.0 on B (original mode), and 1.6 on A (new mode). Last week, when I hit 1.5, my left foot turned in, making walking uncomfortable; but NOT painful, so I stopped.
I am now taking MUCH less medication. Besides stopping Sifrol (Mirapex), I no longer take any Madopar.
I just take Stalevo 4 times a day, and one Symmetrel.
Also, I have stopped the Serrequel completely, because I did not like the vivd dreams I was experiencing.
Unfortunately, I am not sleeping as well as I was.
Other than that, my movement continues to be still, and my friends notice a great improvement.
I can finally drive (hooray!), and hope to mount my bike next week as Spring weather hits beautiful Melbourne.
I'm off to A/Prof Williams today, where I hope that my foot issue will be resolved, and Molly and I can enjoy some walks together.
I still wear my wig when out, as my hair has not covered the scar yet.
If you want me to continue with sporadic updates, please email me and let me know, or else I will assume that I am talking to myself, and no one is reading this any more.
Karyn
karyncurly@hotmail.com
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