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Aware in Care


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#1 RNwithPD

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Posted 05 March 2012 - 04:58 AM

Hi all! I'm a 39 year old RN on a cardiovascular surgery unit in a major hospital who was recently diagnosed with PD. I've never posted here before, but I wanted to comment about the "Aware in Care" campaign recently started by the NPF.

I diagnosed myself with PD near the end of last summer (doctors hate it when we do that!), and referred myself to a neurologist who confirmed my suspicions in early October. Since that time I've been doing a lot of studying about Parkinson's Disease and am really disturbed about how little I, my coworkers, and many doctors really know about the disease. However, considering the amount of diseases and conditions that one has to study in just four short years, it's not suprising that we graduate with just a superficial knowledge of a majority of them. It really takes on-the-job experience and continuing education to become well versed in one area. But as the "Aware in Care" campaign points out, PD patients are far more likely to be hospitalized than the general public, therefore the medical community really needs to place much more emphasis on the care of these individuals.

I, like most other people that I have talked to since my diagnosis, associated PD with the dyskinesias displayed by Michael J. Fox. In fact, after informing them that I had PD most of my fellow nurses responded with statements such as, "well...you look calm to me." They, like many others, think of the disease as being one of wild movements rather than a disease of lack of movement and slowness in movement. As a result, many of them don't believe that I have PD because I don't have a very noticeable tremor or dyskinesias (though, ironically, many of my patients actually comment on my shaking). They didn't know that a tremor was not necessary to be diagnosed with PD. Even the doctors I have talked to seem to only have a very rudimentary understanding of the disease. While most knew the pathophysiology of the disease (i.e. dopamine deficiency in the substantia nigra) none of them (doctors or nurses) were aware of the strict dosing schedules for PD patients, nor did they know what drugs are contraindicated in a patient with PD. In short, the average medical professional seems to only have a slightly better understanding of Parkinson's than the general public.

The point of all of this is that we really need to help increase awareness among medical professionals as to the needs of patients with Parkinson's Disease. Most of the accounts that I have been reading regarding poor care in the hospital setting seems to be as a result of a lack of knowledge rather than a lack of concern or care on the part of the caregiver. Don't assume that just because a person has "RN" or "MD" behind their name that they are already fully educated about Parkinson's, as there is a good chance that they don't. And even if they do, they might be so focused on the condition that has put you in the hospital - such as a valve replacement, bypass, etc. - that they don't even notice that you have a history of PD. As such, I think that the "Aware in Care" kits will be a good way to help educate us caregivers when you're hospitalized. But be mindful to be tactful in how you go about doing this - many nurses and most doctors will tend to get their "feathers ruffled" when a patient tries to educate them. The best bet is to have pre-printed information with the National Parkinson Foundation's logo on it to give credibility to the information that you are trying to convey. And, from what I understand, the Aware in Care kit will have all of this ready for you should the need arise. Thanks NPF!

#2 Rogerstar1

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Posted 05 March 2012 - 09:08 AM

...and thank you for posting. Very informative!

Roger

#3 joyfulnoise

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Posted 05 March 2012 - 04:06 PM

Hi all! I'm a 39 year old RN on a cardiovascular surgery unit in a major hospital who was recently diagnosed with PD. I've never posted here before, but I wanted to comment about the "Aware in Care" campaign recently started by the NPF.

I diagnosed myself with PD near the end of last summer (doctors hate it when we do that!), and referred myself to a neurologist who confirmed my suspicions in early October. Since that time I've been doing a lot of studying about Parkinson's Disease and am really disturbed about how little I, my coworkers, and many doctors really know about the disease. However, considering the amount of diseases and conditions that one has to study in just four short years, it's not suprising that we graduate with just a superficial knowledge of a majority of them. It really takes on-the-job experience and continuing education to become well versed in one area. But as the "Aware in Care" campaign points out, PD patients are far more likely to be hospitalized than the general public, therefore the medical community really needs to place much more emphasis on the care of these individuals.

I, like most other people that I have talked to since my diagnosis, associated PD with the dyskinesias displayed by Michael J. Fox. In fact, after informing them that I had PD most of my fellow nurses responded with statements such as, "well...you look calm to me." They, like many others, think of the disease as being one of wild movements rather than a disease of lack of movement and slowness in movement. As a result, many of them don't believe that I have PD because I don't have a very noticeable tremor or dyskinesias (though, ironically, many of my patients actually comment on my shaking). They didn't know that a tremor was not necessary to be diagnosed with PD. Even the doctors I have talked to seem to only have a very rudimentary understanding of the disease. While most knew the pathophysiology of the disease (i.e. dopamine deficiency in the substantia nigra) none of them (doctors or nurses) were aware of the strict dosing schedules for PD patients, nor did they know what drugs are contraindicated in a patient with PD. In short, the average medical professional seems to only have a slightly better understanding of Parkinson's than the general public.

The point of all of this is that we really need to help increase awareness among medical professionals as to the needs of patients with Parkinson's Disease. Most of the accounts that I have been reading regarding poor care in the hospital setting seems to be as a result of a lack of knowledge rather than a lack of concern or care on the part of the caregiver. Don't assume that just because a person has "RN" or "MD" behind their name that they are already fully educated about Parkinson's, as there is a good chance that they don't. And even if they do, they might be so focused on the condition that has put you in the hospital - such as a valve replacement, bypass, etc. - that they don't even notice that you have a history of PD. As such, I think that the "Aware in Care" kits will be a good way to help educate us caregivers when you're hospitalized. But be mindful to be tactful in how you go about doing this - many nurses and most doctors will tend to get their "feathers ruffled" when a patient tries to educate them. The best bet is to have pre-printed information with the National Parkinson Foundation's logo on it to give credibility to the information that you are trying to convey. And, from what I understand, the Aware in Care kit will have all of this ready for you should the need arise. Thanks NPF!



#4 Beau's Mom

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Posted 05 March 2012 - 08:28 PM

And thank you!
Dianne

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.




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