For 66 year old Neil, deep brain stimulation (DBS) means being able to
do the things that other people take for granted. “I’m sitting here
holding a phone in my hand – I couldn’t do that before. I can hold a
book on my lap and read it. I can sit with my grandchildren on my knee
and read a story to them.”
Neil first started noticing some unusual symptoms about 15 years ago
while going about his normal day at work. “I’d spent 25 years building
trucks and after that I went back to where I’d originally started my
apprenticeship to work as a Quality Manager. I made that change when I
was 48. Not long after that the signs started to show up, not that we
knew what they were. I was walking down into the moulding shops at the
plant and I just froze. I was having trouble taking that next step.
Things like that just kept happening. I found that I was veering off to
the left when I was walking. I’d be going into my office and my left
shoulder would hit the door frame as I walked through the door. Then my
wife said to me ‘your mouth is going funny’. My doctor said ‘well you
have to go to the dentist’ so I went to the dentist and he said
‘there’s nothing wrong with your teeth, I don’t know why your doctor
sent you to me.’ So these were all the little signs that were going on
over the years.”
Neil’s GP was baffled by the symptoms and
couldn’t offer an explanation. It would take another health crisis for
the diagnosis to be made. “During the same period of time I had a heart
attack. I saw my physician and I was telling him these problems and he
did a test and told me ‘you’ve got parkinsonism symptoms.’ I didn’t
know anything about it. He gave me some medication and I took the
script home and showed it to my wife. A friend of hers had a big book
that told you what all the medicines were. They looked it up in that
and they were more concerned than I was from what they read in this
book.”
At that point, Neil made the decision to continue
with the medication given to him by his heart doctor rather than
visiting a neurologist. “I let my physician treat it for the first
couple of years but it was getting to the stage where I wanted
confirmation; I guess for a period of time I was in denial. I went to a
specialist and he confirmed that it was Parkinson’s. I was about 53
years old.”
Neil’s symptoms were for the most part,
adequately managed by medication during the early years but as the
medications became less effective, he tried new drugs, not always
successfully. “Several years ago my specialist tried me on one drug and
that just sent me off the planet. I became compulsive and I couldn’t
sleep. I used to go fishing at two o’clock in the morning and not come
home until nine o’clock at night. It was a terrible period and I was
probably on that drug for two years. Finally I came off it and that was
one of the best things that happened.”
Like many people with
Parkinson’s, over time, Neil began to find that his medication was
becoming less effective. “For the last five years that I’d been on
medication I’d been going backwards. I was taking more medication but
the dyskensias were getting worse. I was taking 150ml every hour. I’d
sit all day and rock and roll on the chair. I had a family and
grandchildren and I couldn’t do much with them.”
“My
specialist mentioned that he knew a neurosurgeon that was now doing DBS
and suggested that I might want to go and have a talk to him. It’s the
best thing I’ve ever done. I wasn’t intimidated by the surgery; I was
ready to grasp anything at that stage. The neurosurgeon suggested that
I was a prime candidate for it. He came across as very confident and I
had two visits with him to talk about the surgery and each time I’d go
home excited for the future.”
Neil underwent the deep brain
stimulation procedure in November 2005 and the improvement was
immediate. “I went to see the surgeon about two weeks after the
operation and I said to him ‘I feel so good I reckon I could drive
around Australia’. He said ‘you’d better not, you’re not meant to drive
for three months after brain surgery’!”
For Neil there have
been few negatives about DBS. The only downside is uncertainty about
how long the treatment will be effective but for now, it has enabled
him to do the activities he had been forced to abandon. “I was doing
some bowling before the operation but that was all. Everything else
just fell by the wayside. The only thing I had left was bowling and
that was a struggle. Now I go for walks, my bowling has improved and I
can tie a knot in a fishing line, something I haven’t been able to do
for several years. I had virtually no quality of life before the
surgery. I won’t say this works for everybody, but I only need 15
percent of the medicine I was on before and I feel terrific. I have 95
percent of my life back.”
