Download The PADRECC Staff expectations for patients and family members

DBS Tips for Prospective Patients and Family Members
By
Susan Heath, RN, MS at San Francisco VA Medical Center
What can DBS help?
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Improves motor function in the arms and legs
Improves tremor
Improves stiffness, or rigidity
Improves dystonia in the arms and legs, like toe curling
Reduces medication wearing off effects – smooths out the fluctuations
Reduces dyskinesias
Can improve sleep patterns
Can improve daytime sleepiness
Can improve postural instability IF responsive to dopaminergic medications
Can improve freezing of gait IF responsive to dopaminergic medications
What can DBS NOT help?
• Cannot help ‘On’ period freezing of gait
• Cannot help ‘On’ period postural instability, or imbalance
• Speech, swallowing problems are not generally improved
• Handwriting, micrographia not improved
• Return of function lost over 5 yrs ago will not reappear with DBS and symptoms
that are not improved in the current medication ‘on’ state will not improve
with DBS.
1. Treatment of all movement disorders, but especially Parkinson's Disease, with
deep brain implants needs to be embraced by the patient and a dedicated family
member. This therapy is a mildly complicated implantable system and requires
the patient and a designated family member to use a handheld device to adjust the
power or settings in order to help control some motor symptoms of Parkinson's
Disease, essential tremor, or dystonia.
2. Often more senior patients need assistance with their usual medication dosing in
the immediate post-operative period and a significant caregiver/spouse/family
member must be available to help. Often family members are surprised when the
post-DBS person is not as independent as they were before surgery. This is a
transient condition but is common for patients who are seventy or older. Older
patients may experience mild fatigue or slight confusion after a big surgery.
Because of this, some patients may have difficulty taking their medications on
time and at the correct times after surgery. However, the newly implanted patient
does typically recover and can usually resume this responsibility in about one
month after surgery. Therefore a designated family member or friend must step in
and become actively involved in the medication dosing and symptom assessment
in the post-operative period. Although this may be worrisome to some caregivers,
with a little teaching and willingness to take charge, most family members or
friends will be able to help out successfully until the patient can resume their
usual independence.
3. A patient’s symptoms can change after surgery, and it is important to learn how
to describe the common problematic symptoms. This requires the caregiver to
speak with the patient and learn the common terms to communicate a problem to
the clinician.
a. It is important to learn the difference between "tremor" and "dyskinesias”
and also to recognize stiffness, dystonia, freezing or shuffling gait.
b. The caregiver needs to be able to recognize symptoms and report them to
the doctor so that the DBS device and medications can be adjusted after
surgery to better control the symptoms that the patient is experiencing.
c. Caregivers should learn what the symptoms of UNDER medication and
OVER medication are for each particular patient.
d. Caregivers need to know that some medications cause certain side effects
and understand that there is a delay in the action/effects of Sinemet for up
to 45-60 minutes after ingestion of food/drink.
e. Recognize there is a negative food interaction between Sinemet and
protein and that the patient should avoid protein-containing foods within
45 minutes of taking Sinemet.
4. It is important to assess when the problematic symptoms appear throughout the
day and assess if there seems to be a relationship to the medication schedule.
(Medication-related problems are often intermittent, whereas, stimulation
problems are often continuous.) Before calling our office for help with a specific
symptom(s), attempt to answer the following questions:
a. Do the symptoms occur upon arising? Or at night?
b. Do they occur before the medications are due?
c. Do they occur after the medications kick in?
d. Are the symptoms present all day long?
5.
DBS stimulation may have some immediate improvements, but there also may be
some delayed improvements. Also there may be delayed side effects after
programming the device, including symptoms such as a persistent new 'soreness'
in a limb or changes in speech such as slurring or 'dysarthria.' If a symptom(s) is
present all day long without relief, then it may be due to the DBS device.
This can be readily assessed by turning the device off for a few minutes to see if
the problem immediately goes away. If the problem does go away with turning
the device off, the settings can be adjusted at your next visit to get rid of that
particular side effect.
6. If you are taking care of a patient after DBS surgery and he or she is experiencing
an old or a new symptom that is concerning, there are several things to consider:
a. If the side effect is lasting all day long and is probably from the DBS
treatment such as shoulder tightness or dyskinesias, then decreasing the
stimulation or voltage (power) of the DBS device using your hand held
programmer may help.
b. If a problem looks like the usual slow or stiff state in Parkinson’s disease
(‘off’ medication state), then it may resolve with more DBS stimulation,
which can be achieved by turning up the voltage (power) using your hand
held programmer.
c. If a problem looks like the usual slow or stiff state in Parkinson’s disease
(‘off’ medication state), another option is to increase the Parkinson
medication (such as Sinemet 25/100) in consultation with the doctors at
the Surgical Movement Disorder Center to temporarily improve the
problematic symptoms. This increase in medication dose may be needed
until a repeat visit is scheduled.
d. If a problem is intermittent and not lasting all day, it is more likely related
to the intermittent dosing of the patient’s medications. The neurologist
can help adjust your medications at the next visit.
4-5-07 S. Heath