Friday, April 17, 2015

A Day in the Life of a Periodic Paralysis Patient

It's that time of year again that I love but absolutely hate at the same time. How refreshing to hear the birds singing and see the first buds appear on the trees... I am even getting into gardening for the first time and rejoicing over my little herb garden!

But any changes in weather are always a tough time for a HKPP patient. So far, this week alone, I have had three episodes. One caused me to miss church Sunday morning. The other came on right during the middle of our church's midweek service. By God's grace I never had to make the ambulance ride mentioned in the poem below, but my sister has.

I am committed more than ever to discover more about this disease, raise awareness, and find some answers. For some reason, Diet Coke seems to have helped some patients ward off attacks. Sometimes it works for me. I was on Acetazolamide for quite some time when I was first diagnosed, but the cost of the medication grew out of control, and I surprisingly started reacting negatively to it - to the point where it was triggering attacks.

I am on the path of looking to find something natural that may work better. I want to find answers, and I want to help people and the families of those who suffer from this disease. My husband is a champ - takes better care of me than anyone ever could without ever once complaining, but with a smile on his face and love in his heart.

So I share these posts not for you to say, "oh, poor Anna"... not for sympathy. But for more awareness, more understanding, and hopefully one day, more answers.

Here's is a poem that I found in my most recent research. You can find it directly here. She writes so well of exactly how one feels prior to being diagnosed, and there even doctors who are yet unaware of the disease. She expresses their sentiments perfectly, "The patient is faking, playing possom I see... Potassium is low, but you will be fine."

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


  1. Praying for you and others who are affected by this! I didn't realize your sister had it, too.

    1. Thanks for your prayers! Sometimes are better than others. Hope's came on mid-college. We are more alike than even we care too admit. ;) But I was really grateful that I could recognize the signs in her and get her to my doctor so she didn't have to wonder for years.

  2. Thanks for your courage in sharing yourself and your struggles. I'm sure you'll find many that are so grateful for your bravery.I am praying for you as you deal with these things that are probably on a day to day basis. The unseen diseases are the hardest and the faking part is one I understand too well. I am also glad to have Isaiah who cares for me better than anyone and actually enjoys doing so when I have my issues, which are still undiagnosed. My last one that was super bad was after Rachel's Wedding; I have had smaller cases, but normally I can keep them from happening by just taking it easy and not over exerting myself. So yeah, praying that you will continue to get more answers and learn how to tackle this thing. Love ya!