All patients should be treated with dignity! Guest Blogger: Maria Pinzon

Hello All,

The following was posted on our Periodic Paralysis Network Support, Education and Advocacy Group. Maria’s message is an important one for all of us so I wanted to share it on our blog. Thank you Maria!!

"Hi Susan,

I want to let you know, you are a brave and beautiful lady! I am reading your book " living with Periodic Paralysis". It is a true eye opener! I almost feel that I am reading not only the story of your life, but also the story of mine! I have experienced many of the same things you experienced growing up as a child that seemed innocuous at the time. I am now 49, not quite your age, and my symptoms have not progressed as horribly as yours. I hope they will not, but I suspect that maybe somewhere down the line we may possibly have some genetics that may link us together some how. I too have had the horrible experience of going to the ER with symptoms, and the first thing everyone wants to do is shoot me up with some Ativan, because my symptoms seem, "crazy".

Fortunately, I was a nurse, and I am aware how much of the medical personnel run to their drug of choice, Ativan, when they believe things are all in your head, and they want to make their inconvenience go away with some Ativan. I have always asked what they are giving me before they do, and I have always refused Ativan. Unfortunately, you were not in the position to advocate for yourself as you could not speak, and I have not yet had full bouts of paralysis, just full body weakness, numbness, and slurred speech and ataxia.

Because our condition is so incredibly rare, we may only get the word out to a small number of people, but there is a much larger issue here, and it is a question of human dignity. All patients should be treated with dignity. No patient should be considered a psyche problem, just because the medical professionals don't understand what is going on with them, and no patient should be sedated with Ativan or any other "psyche" drug or any other sedative type medication, because it is convenient for the nurse, and makes the inconvenience go away, before it is fully understood what is going on with the patient, and these drugs can make things much worse!

What medical text in the world states that a person with muscle weakness and slurred speech should be given Ativan??? Quite the opposite, those are signs that Ativan could make it worse, and should not be given, but that does not seem to be what is commonly practiced today! For any crazy symptom, they run to their drugs of choice to deal with the "whack jobs" that so many of my colleagues will whisper behind the patients backs! Don't get me wrong, there are the good nurses and doctors out there, who don't run to Ativan for every strange symptom, but they are few and far between!

This is a dangerous practice to administer these drugs when you don't truly understand what is going on with the patient! I fear there may come a day when I cannot advocate for myself so easily and not be able to ask what they are trying to give me, or not be able to legally and rightfully refuse it, much to their chagrin, and I hope that day never comes, but my symptoms are progressively getting worse. I have worked with far too many nurses and doctors who joke about Ativan, Haldol, Lorazepam, Valium and many other of these type of drugs being their "best friend" because a patient is having weird, "crazy" symptoms they can't control, but don't want to try, or don't have the time to try and understand or figure out! Medical professionals are supposed to do what is best for the patient, not what is most convenient for the doctor or nurse at the time. This is bad medicine and dangerous practice!!!

They take the Hippocratic and Florence Nightingale Oaths, but how many of them really take those oaths seriously? Or are these oaths they take just a nice poem they read on the day of their graduation to mark the event for many, not something they are actually called to live by? I believe every doctor, every nurse, and every medical professional should be required to read your story. Maybe more lives can be saved; maybe more bad drugs or inappropriate drugs may be prevented from being administered. Your struggle, and mine, is not just a struggle against a horrible disease, but also a struggle to be treated with dignity in the process!

God Bless you Susan Q Knittle-Hunter! Your fight and your story may do even more good in the future, then you will ever know! With much sincere respect and admiration, and a fellow sufferer of HPP and possibly Anderson Tawil Syndrome,

Maria Pinzon"


Until later...