Nina makes an excellent point that if people were more aware of what it's
like to have PD our lives would be easier. This is why it is so important
that Claire Salamon's bill be passed in NJ and becomes a model for
healthhcare workers in the nation. Since I don't take PD meds I have not
experienced their attendant difficulties, but I do have to try and explain
about the neurotransmitters in my chest and leads in my brain. Frustrating
because I have such difficulty speaking. I have put off mammograms since my
DBS out of fear a technician might destroy the neurotransmitters. People
seem to know about heart, but not brain "pacemakers".
Ray
----- Original Message -----
From: "Nina P. Brown" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Saturday, March 24, 2007 9:09 AM
Subject: Re: Question from a "lurker"/MAKE THEM AWARE
Dear Gerry and all,
There is no question that living with Parkinson's can be challenging
for everyone. Since April is Parkinson's Awareness month, I wrote
the following for HAPS newsletter. I think it's important to make
people understand the disease.
nina
****************
Living with Parkinson’s disease is a lot easier if your family
and friends, the general public and health care professionals (in
hospital situations, assisted living, nursing homes) understand and
are aware of the complexity of the disease. There are many
idiosyncrasies associated with Parkinson’s disease that are rarely
mentioned in textbooks. Since April is Parkinson’s Awareness Month,
why not share this information to help others understand…they need to
know.
* Make them aware that your difficulty in moving may result from
slowness (bradykinesia), rigidity, poor coordination, weakness in
your arms or legs, poor posture, and/or problems with balance and
falling. Your gait may, or may not, be hampered from a shortened
stride, dragging your toes, shuffling, freezing or by taking short
quick steps (festination).
* Make them aware that your ability to function is determined by
the timing and effectiveness of your medication and can change, not
only by the day, but also by the hour. Fluctuations, such as
involuntary movements (dyskinesia) or drug-induced tremor, may occur
when the medication is at its peak dosage. At the end of a dose, you
may experience cramping (dystonia), lethargy, a period where it’s
“wearing off,” or have an “on-off” response. When medications are
not given on a precise schedule, the side effects can affect your
entire state of well-being. Therefore, it’s particularly important
that you make sure that health professionals understand the problem
because their pattern of dispensing medication may not necessarily
match your needs.
* Make them aware it takes a cooperative effort to time your
medication dosage. Parkinson’s is not a disorder where everyone gets
the maximum results with the usual “take three times a day with
meals” instructions. Because of disease progression, continuous
monitoring and medication adjustments are required to accommodate the
body’s changing needs.
* Make them aware that you may be taking additional drugs for
other problems and care must be taken to avoid any interactions.
* Make them aware that an unexpressive face is a symptom of
Parkinson’s; it is not a sign of disinterest or a lack of
understanding. Help them understand that it is the rigidity from
Parkinson’s that creates the blank expression and can also affect
your eye control and blinking reflexes. Explain that some people
develop a weak voice with rapid, slurred speech and may drool because
of internal regulatory problems. Request that people speak directly
to you even if it takes a little longer for you to put the words
together for a reply.
* Make them aware some people have tremors and others do not.
Some may have urinary incontinence or retention, constipation
problems or sweat excessively. Some do not.
* Make them aware that some people are able to eat without a
problem, while others have trouble swallowing and chewing.
* Make them aware some people with Parkinson’s become depressed,
have memory problems, are unable to pay attention, or may
hallucinate. Health care workers should be aware that episodes of
dementia or hallucinations could be caused by a medication overdose
or interaction.
* Make them aware your sleep may be disturbed and possibly affect
your functioning during the day.
* Make them aware that any kind of stress increases symptoms in
direct proportion to the stress.
The signs and symptoms are numerous and variable between
individuals so you are the only one who really knows what it’s like
for you to live with Parkinson’s; but your life may be easier if you
make others aware.
On Mar 23, 2007, at 9:02 AM, Gerry Haines wrote:
> Hi Nina,
> Great synopsis of the disease. Brig is suffering with dementia and that
> is
> the pits. After 22 years of handling this, I am finally getting tired
> and
> worn out. You and I both know, this is not a one -person disease, it
> involves
> everyone, family, friends etc. Like you, we have met the best group of
> people in the world, I always said, I never met a Parkinson's person, I
> didn't
> like.
> Hopefully all we have done, from advocacy to clinical trials will keep
> newly
> diagnosed from the suffering and emotional stress we have had.
> Gerry
>
>
>
> ************************************** AOL now offers free email to
> everyone.
> Find out more about what's free from AOL at http://www.aol.com.
>
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