Older but Good Information
Feb.
22, 2016
Misconceptions
about Parkinson’s disease are common. The casual observer who sees a person
with a hand that shakes uncontrollably assumes it’s a telltale sign of the
disease, but that’s not necessarily the case.
“You
do not have to have a tremor to have Parkinson’s disease,” says Dr. Michael
Rezak, medical director of The Parkinson’s Disease Research Society and
movement disorder specialist at Central DuPage Hospital, a member of
Cadence Health. In fact, about 40 percent of Parkinson’s patients never do.
People
also believe that Parkinson’s only occurs in older people, but according to
Rezak, about 10 percent of the nearly 1 million people living with the disease
in the United States are under the age of 40. Another mistaken belief is that
patients with Parkinson’s disease will quickly become demented, when in fact,
about 20 to 30 percent will suffer from dementia and only in the late stages of
the disease.
And
the idea that once people have Parkinson’s, they will soon become debilitated
is also false. “The symptoms of every patient are different, so it’s hard to
generalize, but with proper management of medications and other treatment
options, patients can do very well for many decades,” says Rezak.
The
movement disorders of slowness, stiffness, impaired balance, lack of
coordination or tremors are not the first symptoms of Parkinson’s, a
progressive disease of the central nervous system caused by the death of
dopamine-producing neurons responsible for controlling movement and
coordination. One of the earliest is loss of smell. Patients may also have REM
sleep disorder and act out their dreams while they are still asleep. They may
suffer from constipation, bladder problems, anxiety and depression among other
problems. Doctors make the diagnosis of the disease based on the symptoms.
In
a small number of cases, when a diagnosis is uncertain, it can be confirmed
with a relatively new DaTscan imaging technique, available at a small number of
hospitals including Central DuPage. For the procedure, the patient is injected
with a radioactive drug to detect the amount of dopamine present in the brain.
While
the trend used to be to watch and wait before starting a patient on medication,
now it’s common to begin treatment as early as possible. Medications with low
side effects are available to treat symptoms such as slowness, stiffness and
even tremor. Doctors do try to wait to move a patient up to a drug like
levadopa, or L-DOPA because it can create dyskinesia, involuntary uncoordinated
movements such as flailing of arms or legs. It may also work erratically with
on-and-off episodes, so that at times, it’s effective and at other times,
patients freeze and become rigid.
Rezak
points out that it is very important to micromanage the adjustment of
medications whenever necessary. “People with Parkinson’s disease can be
functional for 25 to 30 years,” he says. “I have patients 25 years out still
playing tennis, although they’re not as quick and spry as they used to be.” For
patients who are experiencing fluctuations in the effectiveness of medications,
Rezak says a concentrated levadopa gel that is constantly infused into the
small intestine with a pump will soon be available stateside.
When
the medications are not effective, some patients can consider having deep brain
stimulation (DBS) surgery to implant a device that electrically stimulates the
parts of the brain responsible for motor control. When Toby Katz, who was
diagnosed with early onset Parkinson’s six years ago at age 53, had negative
reactions to the medications to stop her tremors, Rezak suggested the surgery.
“I
was scared at first, but when the medication stopped working, [it] was my
chance to get my life back,” she says. “I told Dr. Rezak that I wanted to be
able to play with my grandchildren and hold them and be able to live a full
life, and if he could do that for me, then the pros outweighed the cons.”
Rezak
and his team, who do about two or three DBS operations a week, performed the
surgery on Katz in December 2012. “I was concerned about the pain, but I was
sedated and have no memory of the surgery, and I was out of the hospital the
next day,” she says. “It was a gift; a miracle. It’s not a cure, and I’m not
going to tell you that there are not days that are more difficult than others,
but my relief has been wonderful, and I’m functioning at a much higher level.”
Katz,
who exercised regularly before being diagnosed with Parkinson’s, started up
again as soon as she could after the surgery. She does dance cardio and yoga,
and has a trainer who helps her work on her balance and strength to keep her
safe and healthy.
“I
think just the act of working out that releases endorphins is such a positive
thing for me that it’s abated any kind of depression,” says Katz.
Exercise,
in fact, plays a crucial role in the treatment of Parkinson’s. Dr. Tanya
Simuni, director of the Parkinson’s Disease and Movement Disorders Center at
Northwestern University Feinberg School of Medicine, says, “Since the inception
of the program, which is more than 10 years old, we have always made it our
commitment to offer a holistic approach to the management of Parkinson’s, and
exercise is an important part of that.”
Multiple
studies have shown that physical therapy is effective in improving the
disabilities caused by the disease. Those benefits, however, fade away if the
patient does not continue to exercise. Simuni says, “There is clear data that
maintaining physical activity allows [patients] to maintain their overall
physical health and prevent the progression of the disease and improve their
ability not only to cope with the disease but to live well with it.” She adds
that patients who exercise regularly have fewer sleep problems and an improved
level of energy.
Simuni
also points out that studies have shown that so-called forced or coached
exercise done on a treadmill, elliptical machine or exercise bicycle where the
intensity can be increased, is particularly beneficial. “My position is that
any kind of aerobic activity, provided that it is geared toward a certain level
of intensity, will provide a comparable degree of efficacy.”
It is nevertheless difficult
for people with Parkinson’s to find the motivation to exercise because of their
movement disabilities and mood dysfunctions, and also because of the daytime
sleepiness that is a symptom of the disease and a side effect of the
medications.“We find that group activities led by qualified instructors are so
powerful because they provide better compliance, emotional benefits and a sense
of group achievement,” says Simuni.
Looking
to the future, Rezak says, “One of our areas of research is to look for
biomarkers and risk factors so we can intervene in the process of Parkinson’s
disease very, very early; maybe before the person has the first motor symptoms,
so we can preserve the dopamine cells before they degenerate.”In the meantime
he underscores the importance of the attitude of Parkinson’s patients. He says
they should educate themselves about the disease in order to take an active
part in their own treatment so that they don’t feel helpless—because ignorance
is dangerous.
http://diseasestreatment.info/the-unshakable-truth-about-parkinsons-people-probably-dont-know/
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