Parkinson's Disease Tulip


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Old 01-29-2011, 07:13 AM #1
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Heart thankful to be alive... doctors in small town "dont really know what PD is"

thank God I am alive...
I thought PD was well known - think again -
the on/off's made me look like to the under educated docs - like for some reason I wanted attention... we actually need more education sent to hospitals, and ER's -who havent the foggiest what PD is -Parkinsonisms...
if we were cancer - perhaps we would be helped?
I am safe - looking forward to better medical people, must go to another state.
pray one for another...
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pd documentary - part 2 and 3

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Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant with the weak and the wrong. Sometime in your life you will have been all of these.
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Old 01-29-2011, 09:55 AM #2
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I had either a stomach bug or food poisoning a week ago..I was sick as a dog, and must've threw up a dozen times..My meds wouldnt work, and had about 2 hours of on time all day..I was kneeling down beside the toilet bowl, made quite a mess, and couldnt move..I was litterally a minute at a time

I thought about going to the ER........But I was home alone, and would have had to call 911 cuz I couldnt drive in that condition..And then I thought about my last two visits to the ER..No, I dont think so..I think I'll take my chances and try to ride this out
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Old 01-29-2011, 11:29 AM #3
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Default Have To Be Your Own Advocate

A few years ago while vacationing with friends, I had an experience in a small town in Delaware that luckily ended okay.

While in the E/R for uncontrollable dyskinesia and pain from both hands having carpal tunnel syndrome, the E/R staff gave me an anti-nausea medicine through the IV in my arm. Unfortunately, they didn't use Zofran (which is safe for PD patients) but used one that works by stopping dopamine production!

All of a sudden, my lungs quit working and I couldn't breathe. I mouthed "help!" to one of the friends who was with me. She thought I just wanted help with the pain. In retrospect, when I told her they'd given me the wrong medicine which stopped my breathing, she said "Oh! That's why they slapped that oxygen mask on you so fast!" But I never knew what happened after I mouthed "help."

If they had asked me, I would have told them I could have Zofran, but not any other anti-emetics that I knew of, but no one asked and I didn't think to tell them because I didn't realize what they were putting in my IV. Now, if I go into the hospital, I tell them up front I can have this, I can't have that, etc. If they seem bored by what I'm telling them, I just repeat myself until they do listen.
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Old 01-29-2011, 11:33 AM #4
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Steve, I was there New Years weekend. My daughter's family shared that virus with this grandmother. And, I too was going to call 911 about 3:30am and go to the ER, but I rode it out and finally it subsided, but there was and hour or so that I thought I would just die right where I was; after all I didn't want to inconvenience my daughter! I never stopped to think about the negative side of the ER, I was just so sick and dehydrated at that point, I almost didn't care.

How little the medical community knows about PD is frightening. I don't have to tell anyone on this board. Many of us have our stories about hospitals and doctors.

Did you know that the information "taught" in medical school is only about one hour!

There is a professor from a university in our state that contacted PAN looking for a speaker. He was forward thinking, to my delight. He taught students who were to graduate and become speech therapist. He needed to find someone who could come to his classroom and explain to his students about PD and what they would see in the clinical setting. I was to speak to them, but became ill a week prior and turned the task over to someone else.

I think about this, but have not taken on the challenge. We have a campus of a community college here and they graduate RNs. Just a place to go and "teach" RN students about PD and meds, etc. So that they can go into the clinic or hospital with the information they need to know. My only concern is on the negative side. Considering how many in the medical profession are in the clinics and hospitals who are uneducated about PD. How will this "upstart" going to counter the rules about meds and other issues.

But then I guess we have to start somewhere!
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"Thanks for this!" says:
Conductor71 (01-29-2011)
Old 01-29-2011, 01:10 PM #5
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Quote:
Originally Posted by digger View Post
Steve, I was there New Years weekend. My daughter's family shared that virus with this grandmother. And, I too was going to call 911 about 3:30am and go to the ER, but I rode it out and finally it subsided, but there was and hour or so that I thought I would just die right where I was; after all I didn't want to inconvenience my daughter! I never stopped to think about the negative side of the ER, I was just so sick and dehydrated at that point, I almost didn't care.

How little the medical community knows about PD is frightening. I don't have to tell anyone on this board. Many of us have our stories about hospitals and doctors.

Did you know that the information "taught" in medical school is only about one hour!

There is a professor from a university in our state that contacted PAN looking for a speaker. He was forward thinking, to my delight. He taught students who were to graduate and become speech therapist. He needed to find someone who could come to his classroom and explain to his students about PD and what they would see in the clinical setting. I was to speak to them, but became ill a week prior and turned the task over to someone else.

I think about this, but have not taken on the challenge. We have a campus of a community college here and they graduate RNs. Just a place to go and "teach" RN students about PD and meds, etc. So that they can go into the clinic or hospital with the information they need to know. My only concern is on the negative side. Considering how many in the medical profession are in the clinics and hospitals who are uneducated about PD. How will this "upstart" going to counter the rules about meds and other issues.

But then I guess we have to start somewhere!
Yes, any sickness we get in addition to pd can be a handful..Seems pd complicates it, or the problem complicates pd

I sat and thought about it for a minute, and realized that throwing up causes dehhydration, so I drank as much water as I could hold down..I couldnt drink anything but water, because it came back up

Not fun!
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Old 01-29-2011, 03:46 PM #6
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Default planning in advance.........not always possible...

Something for the book, then, this topic, there have been so many posts similar to this over the years Here in England Parkinsons UK our main org took it serously and have an information pack you can order in if you know you are going into hospital.....however it does not help in an emergency, especially if you gave the last pack to the last hospital you attended!

It is very important, and after all that people have done to raise awareness it is still a big gap that needs plugging......

You have to feel for the lone well informed person who might be swimming against the tide......

I am only glad to hear that you have survived it Lou.

We don't plan to become unwell with other things, and PD is not so rare that people with it should have to go through what is sometimes a life threatening ordeal.
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