Deep brain stimulation diary: A better night's sleep
Kathy was
diagnosed with Parkinson's in 2001. In
February 2010 she underwent deep brain
stimulation (DBS), a form of surgery which can treat some of
the symptoms of Parkinson's.
Here, Kathy talks about life following the surgery, and
shares her personal experiences in an online diary.
Previous - Deep brain stimulation
diary: Tuning me up
23 April 2010
A few weeks ago I went to see the neurologist who put me forward
for DBS assessment early last year. I had to say a big thank
you to him, because that move has already changed my life. I
also get great support from my local Parkinson's nurse who is always there at the
end of an email when needed.
But it's still early days and clearly not all plain
sailing. With my stimulator on one volt and still on all my
medication, I do have greatly reduced tremor. But when I wake in
the morning, as soon as my brain wakes up - so does the
tremor. After taking my full quota of early morning meds it
then takes about an hour to get it back under control. Then,
if I gauge my meds right throughout the day it stays under
control.
Before the DBS operation this did not happen - I would have
severe tremor for at least half of my waking day. What a huge
difference this operation has already made - not only to my life
but also to the people closest to me who help me to cope.
I feel very grateful for all the tremendous support I get from
my husband, our family and friends, our church and my faith
- all of which have helped me get to this point.
Changing sleep patterns
I am slowly getting back into my previous sleep pattern and now
sleep about 7 hours at night. Before the operation I'd only sleep 5
hours at the most.
Since leaving hospital my thoughts and responses have been
extremely slow, but although my thinking is becoming clearer I
still have to deal with one thing at a time. I write down my
thoughts before they disappear into a black hole forever. I
get muddled if too much information is in my head at one time.
The main downside just now is that my balance is worse than
before. When I wake in the morning I don't move very well at
all, I shuffle around until the meds kick in. I have not
actually fallen but do totter a lot before managing to regain my
balance.
Wiring troubles
Although my next 'tune-up' was not due until early May, last
Friday I had to make an interim visit to King's Hospital as
the wires from my head to my control box in my tummy suddenly
tightened up. Standing up straight is causing me some
discomfort.
This apparently does not happen very often but if it was going
to happen to anyone, it would have to be me! So I may have to
return to King's for another small operation to lift the box
slightly higher to prevent this happening again.
I am waiting to hear back from my surgeon with a date for this
to happen. But I am not deterred by this hiccup - it will
all resolve itself in time. Good thing is that I received my
next tune-up early and so am now on 1.2 volts, and there is a
further improvement in my tremor.
Your comments
It is always interesting to hear how other people are handling
Parkinson's. I am in my eighth year with it and most days have a
big struggle like everybody else does. I am experimenting with my
medication by adjusting my times and dosage of STALEVO with good
results. Remember you are in charge of your medication. The
specialist prescribes it but can't feel the day to day changes that
we go through. It's what one doesn't see that is the worst part of
Parkinsons. So think positive ... and KEEP SMILING. 82 year
old
Lewis, Derbyshire
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