Saturday, July 4, 2009

A friend's poem about Hypokalemic Periodic Paralysis has been published in the MDA magazine

As you can see, it is very frustrating living with a life-threatening illness that people don't understand. Thanks Victoria, well done.


A Day in the Life of a Periodic Paralysis Patient


The 911 call placed, you feel like you're dreaming,
You’re not, from afar you can hear sirens screaming;

The ambulance ride, your body’s not moving,
They wonder aloud, whoa, she's not improving;

Respiratory muscles won’t respond to a breath,
You know once again that you’re so close to death;

Whizzed in on a gurney, it’s all moving fast,
What? You’re parked in a hallway, suddenly bypassed;

How are you this evening? Then give you that look,
The oxygen, sensors and wires they unhook;

They make you feel guilty, as if you are faking,
You’re frightened, can’t breathe, and everything’s aching;

The ER visits, the doctors, the begging and pleading,
You would not desert me if I were here bleeding;

Weakness, paralysis and cognitive decline,
Inverted T-waves, arrhythmias are fine;

The patient is faking, playing possum I see,
With his hammer he can't get a jerk from my knee;

Agonizing pain, it strikes with a flash,
The doctor shrugs shoulders, departs in a dash;

Positive tests, plus symptoms and signs,
Potassium is low, but you will be fine.

~ Victoria Cecil-Shover
Solon, Iowa
hypokalemic periodic paralysis

http://www.mda.org/publications/Quest/q163infocuspoem.html

3 comments:

pvinfotech said...

I know what you're going through. I belong to a 4-generation family with familial periodic paralysis. Most in the family are hyperkalemic but my 24-year old son is hypokalemic. He's been in the hospital before with potassium drips to bring him out of severe episodes. He missed work today with a moderate episode (he has to get documentation from our family physician for work - more money spent) - he could walk but had no upper body strength. He's a welder and he's already been let go from one job because of his muscle problem and is afraid that he'll lose his current job. Thankfully he has a boss that realizes that my son has a medical condition even if he doesn't understand it. A understanding boss won't help though, if my son keeps missing work because of his paralysis problems. We live in central MS and are looking for a specialist who knows about periodic paralysis. We've had no luck getting referred to anyone from our family physician - do you know of anyone?

pvinfotech said...

I know what you're going through. I belong to a 4-generation family with familial periodic paralysis. Most in the family are hyperkalemic but my 24-year old son is hypokalemic. He's been in the hospital before with potassium drips to bring him out of severe episodes. He missed work today with a moderate episode (he has to get documentation from our family physician for work - more money spent) - he could walk but had no upper body strength. He's a welder and he's already been let go from one job because of his muscle problem and is afraid that he'll lose his current job. Thankfully he has a boss that realizes that my son has a medical condition even if he doesn't understand it. A understanding boss won't help though, if my son keeps missing work because of his paralysis problems. We live in central MS and are looking for a specialist who knows about periodic paralysis. We've had no luck getting referred to anyone from our family physician - do you know of anyone?

Kelli said...

Hi there...I don't have any contact info for you but I'll reply here. I have had a lot of trouble finding a doc who understands the condition. Anytime I'm at the doc or in the hospital they check my potassium, give me a prescription for more, and say goodbye. They think it is an easy fix but it's not. Periodic Paralysis is a defect in the transport of potassium to the right places in the body, not a true lack overall. Docs don't want to read about it and really try, for the most part. Even my primary physician is frustrated that I'm not any better and has pretty much written me off. I suggest contacting the Muscular Dystrophy Association and talking with a health services coordinator in MS about physicians in the area. I am still trying to reach someone at the MDA in Alabama...no luck so far and it's frustrating. I may try the MS chapter next (I live on the state line). Thank you for writing...I am always looking for others to talk to about this. Feel free to email me at ugottafriend4life@gmail.com in the future. Take care.