By Ralph Berthiaume, president of Periodic Paralysis International

What would you do?

I woke up this morning to the dog barking. It had to be right around 7 am because that’s when my wife leaves for work, and he always barks to say goodbye. I don’t know the exact time because when I went to move my arm to look at my watch it wouldn’t move, nor would my legs. I was paralysed. This was an attack of hypokalemic periodic paralysis.

Normally during an attack of paralysis, I would take immediate-release potassium, which was on my bedside table along with a bottle of water, but I couldn’t move my arms. No one was home but me and the dog.

What did I do?

I knew there was no cause to panic: my breathing was fine; I wasn’t feeling any kind of arrhythmia. I knew I just had to wait it out, or wait for my wife to come home from work at 4.30 am.

Then I started wondering… What would you do? What would my family, friends and social media acquaintances do? What do other people with periodic paralysis do?

I thought about all the others who suffer from this rare disease (around 5,000 people in the US), especially those who are new to this disease. I couldn’t wait to be able to share this experience with them.

Thank God, just around 10.30 am, I was able to start moving again. I didn’t let this episode cause me stress or anxiety—that would have just made my attack worse. Instead, I reflected on my life… I’m so thankful for everything I’ve learned from the periodic paralysis community.

I got some well-needed rest. It’s currently 1 pm and my muscles are in a lot of pain. I checked my potassium level (it was 3.8) and I have taken my potassium.

I’m slowly but surely getting stronger.

A thank you from Ralph

Thank you to every periodic paralysis patient that has shared their experiences in the Periodic Paralysis Support Network (PPSN). You all give me the strength and knowledge to carry on.

“The periodic paralyses are a group of rare inherited disorders that cause temporary episodes of muscle weakness or paralysis… [They] are loosely divided into types by how the patient reacts to potassium. In the most common form, patients grow weak or paralysed after foods or events which lower the level of potassium in the blood. Strength improves when the patient is given potassium. This form is called hypokalemic periodic paralysis (HypoKPP). Attacks last from hours to days and range from mild weakness to profound paralysis. Mutations associated with HypoKPP are on the calcium and sodium channels.”¹

[1] What is Periodic Paralysis? | Periodic Paralysis Intl. Accessed 17 April 2023. https://hkpp.org/what-is-periodic-paralysis

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