Kay was 33 when she first experienced symptoms of Parkinson’s and at
the time she didn’t think much about it. “I was making a telephone call
and felt a tremor in the top part of my arm and could also see it as
well as feel it. I thought it was a pinched nerve. If I had 10 cents
for every time that someone thought it was a pinched nerve I’d be a
rich woman by now! I visited chiropractors and physiotherapists trying
to get help but nothing worked.”
Within months, what had started as a tremor had developed into a
radical swing and Kay realised that she needed to get to the bottom of
what was happening.” I went to a specialist and he told me that it
looked like Parkinson’s, but that he couldn’t give me a formal
diagnosis. He told me to go away and live my life as normally as
possible. I was three months pregnant with my first son at the time.”
After the doctor’s comments, Kay spent a lot of time researching
Parkinson’s and the treatment options. “I rang a Parkinson’s patient
support group and had some of their information sent to me and I soon
realised that I definitely had Parkinson’s. Interestingly enough, it
was a relief to find out what was wrong but there were still times when
I was scared. I’d be crazy if I wasn’t. I knew I wasn’t going to go on
medication. That’s one of the reasons why I didn’t go back to the
doctor for so long. I’d read about the medication and I knew that I
wasn’t going there.”
Kay lived with the symptoms all the
while managing life as a busy mum to two young boys.” It wasn’t easy. I
went through the kids’ early years using cloth nappies with the big
pins! So when I look back I did it the hard way. And this tremor was
really something.”
When her youngest son was 18 months old
Kay made the decision to go back to the doctor. “Until that time I was
managing without medication, which wasn’t always fun. I remember saying
to a girlfriend ‘I think I’m almost ready for the medication’ and she
said “I thought you were ready 12 months ago, Kay”. It’s interesting
how other people have a different perspective. I went on a drug that
was the big new thing at the time. The doctor said that it would be
effective for a year, and pretty much exactly a year later it began to
lose effect. I’ve found that with doctors – they do tend to be right,
for better or worse!”
“We had booked a trip to Europe with
the kids and we decided to go earlier rather than later in case I
couldn’t do it then. I was getting to the end of my tether with the
tremors so I decided it was time to go on the big drugs. I went onto
levodopa and it was great. Within the hour – the hour– the
tremor had stopped completely. I had so much energy. I thought ‘what do
normal people complain about if this is how they feel?’ We had a great
trip. It was really about the little things. I remember putting makeup
on; I wanted to look good again.”
Over time, the levodopa
became less and less effective at treating the symptoms and Kay had to
keep increasing her dosage. A friend who also had Parkinson’s told her
about surgery known as a pallidotomy and she decided to go for it. “I
had the pallidotomy in 2000 and was only in hospital for one night. I
remember one of the nurses saying to me ‘its amazing, people are in
here for problems with their livers and so on and they’re in here for
weeks. You’re in here for brain surgery and you’re only in for a
night.’”
Balance issues meant that Kay only had the
pallidotomy on her right side but over time, the balance issues on her
left side worsened. “I was falling left right and centre. I’d be going
down and holding onto the kitchen bench and even that wouldn’t help me.
I was lurching all over the place. I was really in a mess.”
Eventually,
Kay investigated the possibility of deep brain stimulation, and decided
to go ahead with the procedure. She had no fear of the surgery. “Even
the drill didn’t scare me. To me what is terrifying is the thought of
being stuck in my body for the next 25 years. I had my hip replaced
this year and that was much scarier. I’m a bionic woman now – spare
parts everywhere!”
Kay no longer has her balance problems
following the deep brain stimulation and has had great improvement in
her gross motor movements but unfortunately her fine motor movements
are not as improved, and she has difficulty with activities such as
typing.
Kay recognises the importance of being able to talk
to someone who has been through a similar experience. “I remember
talking to friends about surgery and that sort of thing and they would
all say ‘don’t do that’ and I remember thinking at the time that I just
wanted them there as a sounding board – my mind was already made up. I
didn’t necessarily want them to say anything; I just wanted them to
listen.”
