You may be interested in his DBS experience:

The best medicine may be hope

Carolyn Cole, Los Angeles Times
Parkinson's disease gradually robs you of control over your body. Joel
Havemann, a reporter, has had it for 16 years.

Carolyn Cole, Los Angeles Times
Joel Havemann says he often has trouble reading his own writing.

By Joel Havemann
The Hamilton Spectator
Washington (Nov 29, 2006)
For people with Parkinson's disease, the rest of your life begins on the day
of your diagnosis. It's your own Sept. 11 or, if you're old enough, Nov. 22,
Kennedy's assassination. It's unforgettable.
For me, that day was Feb. 5, 1990. It was like a death sentence with no
chance of pardon. I was told control of my body would slip away. I feared
the same would happen to my mind. The deterioration would be gradual, like
the disintegration of a glacier -- at the end of each year, more of the
glacier would have dropped into the sea.
As far as I can tell, there is no guaranteed formula for coping with
Parkinson's or other degenerative neurological diseases. There's no easy way
to deal with tremors so violent that you can't hold a glass of water.
There's no approved method of not falling down on your way to the bus stop,
breaking your wrist or taking 10 stitches in your eyelid.
Sure, you can make life more tolerable. If Parkinson's is your disease, some
drugs mask the symptoms. There's even an operation (which I had two years
ago) to control the disease's effects. And regular exercise can help you get
through the day.
But all the while, the disease eats away at your brain. Nothing can stop
that. You have good days and bad days, but eventually the bad days
predominate.
In the end, there's really only one thing that can help you face another
day.
It's hope. Either you've got it or you haven't.
I'm by nature a hopeful person. I don't say that as a boast but merely as an
observation.
It's not that I think everything is ideal. Right now I have a terrible time
keeping upright when I walk. Instead of long, sure, heel-first strides, I'm
more likely to lean forward and take short, mincing, tip-toe steps that have
to be quick just to keep my feet under my centre of gravity. Usually I can
force myself to slow down and stop while I'm still on my feet; sometimes I
stop by pitching forward face first.
I'm so likely to topple over that I go out of my way to stay firmly planted
in a chair. Just getting up from my desk to go to the bathroom requires a
major commitment. Do I really have to go? What used to be routine now
involves considerable thought.
Some formerly mandatory activities of daily living are fast becoming
optional. It is only out of respect to my mother, who taught me to live
properly, that I continue to hang up my pants when I go to bed. There's no
other way to say it: I hate hanging up my pants. It requires all the basic
skills of co-ordination and dexterity that I lack. You have to hold the
pants by the creases in the legs and somehow feed the legs through the
hanger and then get the pants to fold over the horizontal bar on the hanger
so that there are no wrinkles and the creases are right at the folds.
Whew. It exhausts me just to describe it. I hope everyone appreciates how
much trouble it takes to keep my pants looking fresh. But the fact that I
continue to hang my pants properly makes me an optimist, which seems like a
good thing to be.
"Optimists cope better with adversity than do pessimists because they are
less likely to dwell on their problems," three scholars wrote for the
American Psychological Association after reviewing the literature on the
subject. In particular, they referred to a study of Parkinson's patients
that found that the optimists needed less help with routine activities of
daily living -- like hanging up pants, I suppose.
There is realistic, look-the-future-in-the-face kind of hope, and there is
Pollyannaish hope. Mine is strictly the first type, possibly to a fault. I
have abandoned hope that medical science will deliver the cure that it's
been promising just around the corner ever since my diagnosis. Researchers
still don't know the exact cause of the disease or the mechanism by which it
methodically kills certain brain cells. At least in the United States, a
political battle has deprived them of federal support for research with new
embryonic stem cells, perhaps the most promising potential therapy.
Considering these obstacles, I've long since given up on a cure in time to
do me any good.
Nor do I even expect to feel better than I do now. I'll be surprised if
anything comes along that is more effective than my operation. The year of
my surgery, 2004, was the first in 15 in which I felt better at the end than
the beginning. It will probably also be the last, because the operation did
far more good than anything else now available or, as far as I know, close
to being available.
Electrodes implanted deep in my brain and wired under the skin to batteries
in my chest disrupt the circuits that cause many of Parkinson's familiar
movement disorders, including tremor. But the electricity also interferes
with parts of my brain that affect my ability to walk properly. And there is
no way the operation, misleadingly called deep brain stimulation, can
alleviate Parkinson's nonmotor symptoms, which range from depression and
dementia, which I don't have (at least I don't think so), to incontinence
and low blood pressure, which I do have (mildly).
Hope, for me, is a state of mind, not focused on a particular prospect but
rather attached to something more amorphous, less definable. My neurologist,
Stephen G. Reich of the University of Maryland medical school, puts it
nicely. "Hope," he says, "gets us out of bed in the morning: hope that we'll
accomplish something great at work, hope that we'll see our kids do
something cute or clever, hope that we won't get into a car crash."
Circumstances can nourish hope.
A supportive family (which I have) is a big help. It's not only that my wife
and three kids instinctively treat me like an ordinary person and not like a
cripple. It's also that I don't want to let them down by succumbing to my
disease and becoming a patient instead of a husband and father.
In much the same way, close friends make a difference -- friends like my
college roommate of many years ago, who drove all the way from Toronto to
Cleveland to be there for my surgery.
An engrossing job (which I also have) makes life a lot easier too. Being a
reporter is a constant education, and the Los Angeles Times has provided
enormous support. Within six months of my diagnosis it tossed the dice and
sent me to report on the European economy from Brussels, where I enjoyed the
best three professional years of my life.
Religious faith (which I lack) also makes hope easier to sustain. Here I
have to accept the testimony of others, of families like that of Brad and
Gloria Christie, whose 13-year-old son Luke has spinal muscular atrophy,
which causes progressive muscular weakness.
"The original diagnosis wasn't as hard on us as it might have been because
we're very strong in our Christian faith," says Brad Christie, an English
professor at South Carolina's Erskine College.
"Religion has been a great comfort," says Gloria Christie. "God has a plan
for us and for Luke, and prayer helps us understand it."
Luke had spinal fusion surgery last year to correct curvature of the spine.
Elders from the Christies' church went to their house to pray that the
surgery succeed, which it did.
Do prayers make a difference?
A Harvard review of studies of heart bypass patients found more
postoperative complications among those who were the subject of others'
prayers than among those who were not. And a review of the literature by
three psychologists found "no scientifically discernible effect" of prayer
by others on medical outcomes.
But wait. In a similar review, four Virginia researchers concluded that
prayer and other forms of religious intervention alleviated arthritis pain
and improved success rates for in-vitro fertilization.
"Patients who are hopeful, largely because of their religious faith and
their trust in the physician, have a more rapid return to health and a
higher rate of survival," writes Harvard's Dr. Jerome Groopman in The
Anatomy of Hope, his reflections on a career of studying such deadly
diseases as cancer and AIDS -- and patients' ways of coping with them.
And if religious faith can have this kind of impact, how about a strong
family, good friends and an engrossing job: in short, a life worth hanging
onto? Science can at least tell us that a more hopeful personality
translates into a better adaptation to chronic, degenerative disease. Even
if optimism cannot alleviate symptoms, it can help people deal with them.
"Hope tempers pain, and as we sense less pain, that feeling of hope expands,
which further reduces pain," Groopman writes.
For me, the routine activities of daily living, like hanging up my pants,
are becoming less routine. I can no longer shave with a blade; I'm not ready
to die of a slit throat. I used to be able to get in and out of the bathroom
in the morning -- showered and shaved, with teeth brushed and hair combed --
in 15 minutes. Now it takes half an hour.
If that's as bad as it gets, I won't complain too loud. Just in my own
little office of 40 or 50 people, fate has dealt more harshly with others.
One colleague, almost 30 years younger, has lost some of his eyesight to
macular degeneration. A contemporary of mine died of a brain tumour about 10
years ago.
Even more wrenching is watching your own child slowly die. This happened to
one of our reporters shortly before I came here 23 years ago. His only
daughter died a long, nasty death from cystic fibrosis two weeks short of
her 15th birthday. It took such a toll on his family that the reporter,
among the sweetest and most easygoing guys I know, split with his wife.
When I was diagnosed with Parkinson's at 46, Dr. Reich tried to reassure me
that life did not end with the diagnosis. I remember blurting out, "Maybe
so, but what will I be like when I'm 60?"
Now it's 16 years later, and I'm still a functioning member of society. Will
I be able to say the same in another 16 years?
I hope so.
Drugs, surgery and exercise can help. But all the while, the disease eats
away at your brain. Nothing can stop that. You have good days and bad days,
but eventually the bad days predominate. In the end, there's really only one
thing that can help you face another day. It's hope. Either you've got it or
you haven't.

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