The Challenges of Periodic Paralysis by Guest Writer

Hello All,

Today I am posting something written by one of our members. I have been having a very difficult time with paralysis, weakness, “brain fog” and more the past week. I posted this information on our PPN Support Group board a few days ago. I also apologized for not responding to everyone’s posts like I usually do. Maureen wrote the following in response and I wanted to share it with everyone. It is important for others to know what it is like to live with Periodic Paralysis.

“With much admiration and appreciation for your perseverance and dedication…You have no need to apologize for anything. Wish that your conditions weren't robbing you of vitality. It is hard enough to deal with physical incapacitation and pain drain, let alone depletion from difficulty breathing and effort to sustain let alone push through despite how you are feeling. To have brain fog adds so much more depletion and challenge. It does get harder to get replenished. Because of our physical compromise that results in slowness, lack of movement, and even immobilization, we wouldn't think about correlating the effects of our condition to compare to that of an athlete. And to people who don't have conditions like PP (let alone having any additional disorders), it probably seems ludicrous to use an athlete as an allegory to being a person with PP.

But the extra exertion on our body to have to work in the condition of how we're compromised and with so many obstacles in order to just be managing to sustain basic function seems comparable to the effort that athletes exert to accomplish their goals. But the efforts they need to exert, to achieve their goals are self-imposed and voluntary choices. We aren't given the choice when our DNA dictates what our bodies are going to have to deal with in order to function to accomplish the goal of living let alone strive to accomplish projects and tasks that give meaning and purpose and fulfillment.

Living with a condition like PP requires more effort and endurance than someone would have to do who does not have this kind of physical compromise. Living with PP is like being an athlete, such as a marathon runner or a swimmer, because more exertion is required for an athlete to reach a higher level of performance and with PP our bodies have to perform at a higher level of exertion in order to perform in the 'race of life'. But unlike being in a marathon, there aren’t scheduled breaks to anticipate and provide opportunity to be refueled. No one would expect a car to keep going without fuel or with electrical failure or mechanical failure. And no one would expect a runner to run with mud closing in around their feet up their legs or run barefooted through obstacles like glass or sharp pebbles or unstable ground with rocks and holes that would hinder their performance or could even be dangerous or a swimmer to swim in mud, clay or quick sand.

With PP that is what our bodies are dealing with in terms of having extra obstacles and challenges to function. But unlike an athlete who can build up endurance through pushing themselves physically, we get more depleted when we push ourselves. We can't build up endurance when we put in more effort and we won't experience the reward of expanding greater physical capacity, greater well-being and health benefits that an athlete gets the benefits of through their exertion. So it seems like PP is more challenging, physically, than the challenges of being an athlete, with what appears to be less reward and benefits. So, maybe it is ludicrous to correlate having the challenges of PP with the challenges of being an athlete.”

Maureen,

Thank you so much for sharing with us. What a creative way to explain the challenges of living with Periodic Paralysis!!

Hugs, Susan