By Michael Lea, Kingston Whig-Standard
 |
| Garth Scott, at his home in Kingston, holds the Duodopa pump that injects medication directly into his small intestine to control the symptoms of his Parkinson's Disease. The procedure is relatively new to Canada. (Michael Lea/The Whig-Standard) |
Doctor
says change in Garth Scott’s condition with new Parkinson’s treatment
‘miraculous’
It
was just over 20 years ago when Garth Scott first noticed something odd was
going on with his right arm.
For
some reason, it wasn’t swinging normally and was always hanging behind his back
whenever he walked.
“It
took a while for me to notice that. Finally I talked with my family doctor,” he
said.
The
diagnosis was immediate and unnerving. He had Parkinson’s disease, a gradual
degeneration of the nerve cells in the brain that control body movement.
Scott,
now 83, didn’t know much about the disease at the time.
“All
I thought was everybody with Parkinson’s ran around trembling and shaking.”
For
a while, his arm was the only thing that reminded him he now had it.
The
longtime Kingston resident had worked at DuPont for more than 40 years,
spending five of them as communications co-ordinator before he retired in 1993.
By
then, the disease was still “at a livable stage”
“I
could function,” he said. “If I didn’t tell you, you wouldn’t really know I had
Parkinson’s. I just learned to cope with it.”
Scott
loved woodworking in the workshop he had set up in his home, building furniture
that included the clock that still graces his living room. He also loved
reading and writing.
At
first, Parkinson’s didn’t affect his life too much.
“You
learned to live with it,” he said. “It just slowly progressed. Medication
controlled it.”
Eventually,
he started to develop the uncontrolled movements that are common with
Parkinson’s. His head would bob and his arms would flail around. Or the
opposite would happen and it would seem like he was in slow motion.
“It’s
like wading through a barrel of cold molasses,” he said.
Scott
remembers one trip to a shopping centre when he suddenly couldn’t move. His
brain was sending the signals to his legs but they weren’t responding. His
wife, Mary, had to give him a gentle kick in the heel to get him started up
again.
“It’s
hard for people who don’t have Parkinson’s to understand how that could
happen,” he said. By then in the care of a neurologist, he was on oral doses of
dopamine to control the symptoms but had to keep increasing the dosage as they
got worse. But taking medication for the slow movements could trigger the arm flailing.
“I
went from bad to worse,” he said, and he had to give up his beloved
woodworking.“I was afraid to use a saw,” he said.
Scott
couldn’t walk their dog, couldn’t hold a book still enough to read it, couldn’t
type on his computer. Even eating was a problem.
“It’s
hard to bring a spoonful of soup to your mouth when your hand is flailing
around.
Last
summer was the lowest point so far.“It really got bad. I spent most of last
sumer sitting in a chair,” he said. “I couldn’t walk, couldn’t go shopping, couldn’t
drive, could hardly do anything.”Depression, a common symptom for people with
Parkinson’s, became an issue.“You are a prisoner in your own body and there is
nothing you can do about it except take the medication and hope for the best,”
he said.
Then
Scott learned of a new procedure designed to improve the quality of life of
Parkinson’s patients.
Instead
of taking the medication orally, it is injected through a small opening in the
skin directly into the small intestine, through a tube attached to a pump the
person carries outside their body.
Dr.
Stuart Reid, a neurologist at Kingston General Hospital and Hotel Dieu Hospital
who specializes in movement disorders such as Parkinson’s, explained the
procedure solves a long-standing problem of oral medications causing those wild
movement swings in patients, where they go from being almost motionless to
rapid flailing. Patients would take multiple pills a day, trying to time them
to minimize the pendulum effect.
In
this new procedure, a tube goes into that part of the intestines where the
medication — a combination of intestinal gel called levodopa and carbidopa —
can be taken directly into the bloodstream.
“You
are pretty sure the medication is going to the right place and it is pretty
much guaranteed to be absorbed well. And it is going to give very smooth,
consistent levels in the brain and the bloodstream,” Reid said. “The reason it
works really well is that it can be slowly and constantly delivered throughout
the day, a very even level of it.”
That
minimizes the chance of movement swings and improves the patient’s quality of
life.
The
procedure has only been available in Canada since last January, although it has
been used in Europe for more than 10 years. Reid explained the delay was a
result of such procedures needing to go through two major trials before being
approved for North America.
“It
is fairly new,” he said. “We are just picking up steam now.”
To
date, five operations have been done here, more than anywhere else in the
province.
The
operation is carried out by a gastroenterologist and doesn’t require as much
specialized surgical equipment as the brain surgery that can also be used to
help Parkinson’s patients in dire straits.
Reid
said the new procedure seems to have only two negative aspects to it.
One
is having a tube inserted in your intestine and the need to carry the pump
around.“But most people are OK with that,” he said. The second is the cost.
“It
is hideously expensive,” he said.
As
a result, the province has laid down strict criteria for Parkinson’s patients
to meet before they can be approved to get the procedure. Their condition must
be bad enough that normal medications are no longer effective.
Scott
had the operation to have the unit installed last October.
“The
surgery was nothing,” he recalled. “It was piece of cake. I went in one day and
home the next day.” Scott had to wait a while to ensure the incision through
which the line was installed had healed properly before the pump was put in
operation.“Once that was done, they hooked me up and the next day I noticed a
difference,” he said. “It was really quite remarkable. I could walk around, I
wasn’t shaking, I didn’t have any low period. It’s a remarkable improvement in
my quality of life.”
Simply
put, it has given him much of his life back, he said.
“I
can walk the dog now. I couldn’t before. It was terrible trying to use my
computer. Now I can sit and type all day.”
Scott
can go shopping again without worrying about freezing up in mid-mall. He goes
to a writing workshop each week.
“I
play Frisbee in the backyard with the dog just about every day,” he said.
That’s something he couldn’t even imagine this time last year.
Reid
also noticed a difference in Scott immediately after the pump was turned on.
“For
years I have seen him get worse with the Parkinson’s and more and more
affected,” he said. He called Scott “a vibrant man who was a real boon to the
community” whose quality of life was steadily decreasing.
But
soon after the pump was first turned on, “it was the happiest I have seen the
man since I have known him,” Reid said.
“It
was like seeing a brand-new person emerge. You wouldn’t believe it. It was a
real Lazarus effect.”
Reid
wished he had a video to show the before and after differences.
“It
was miraculous in many ways. It is miraculously rewarding. It is incredibly
fulfilling, too.”
Reid
expressed his thanks to the hospitals and the gastroenterologists for
supporting the new technology. Also playing a key role is nurse Adrianna Breen,
who does the followup care with the patients.
Scott
still has limitations to his life that come with being 83.
“But
the Parkinson’s limitations have, for all intents and purposes, disappeared. I
can’t praise this enough,” he said.
Scott
keeps the pump, about the size of a large TV remote, tucked inside his sweater.
“I
can honestly say I don’t even know it is there. I just forget about it.”
He
keeps it running from 6 a.m. until he goes to bed. Then he disconnects it in
case he rolls onto it during the night and kinks the line. He takes a single
pill to replace it and it lasts him through the night. In the morning, he
reconnects the pump and is ready to go again. It runs on two AA batteries that
last a week.
Part
of the pump is a bag containing the dual medications, which he has to change
every day. A month’s worth is delivered at a time.
The
cost to him: “Not a nickle.”
Since
getting the procedure done, he has had a couple of people with Parkinson’s who
are considering the operation come to his home to talk to him before getting it
done themselves.
“They
were quite anxious and I hope I was able to reassure them,” Scott said. “I
don’t tell them one way or the other that they should do it or they shouldn’t
do it — that’s up to them and their doctor. All I can do is set an example and
say what it has done for me.”
It
isn’t a cure, he stressed, since there is no known cure for Parkinson’s.
“But
it helps you manage your symptoms.”
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