I’m going to stray from my timeline of when things first began to happen in my life.
DISCLAIMER: video may be a trigger if you have FND, view with caution.
Yesterday, I had a set back. This isn’t abnormal, it’s just another bump in the road. Some bumps for me are rougher then others to handle and yesterday was one of those bumps. I was just passing a good 16 day streak of no episodes which is pretty amazing lately. I've been on a new medicine now for about 4 months and I'm still on the fence if it has been beneficial for me or not. I've had new freezing symptoms that come out of the blue that scare me to do many activities that would produce joy in my life. When I do have an incident I know what I’m supposed to do, and what my therapist wants me to do. Try not to let it bother you, it’s just a little set back, and think positive thoughts! Well, sometimes it’s okay to be upset with a set back by going over that bump, to feel embarrassed and to feel let down by your own body. But, It has been so many days without an episode, I was feeling hopeful that maybe the medicine finally started working.....but I guess not.
Over the weekend I was doing my physical therapy homework and introducing my mind/body to simple boxing punches. Sometimes, when I’m given new things at PT, I struggle getting my body to carry out the skill. My therapist wanted me to practice since prior to Covid, I had trouble with boxing. The weekend went great! My husband even worked some memory in with my punches which is a higher level. I was excited to go into therapy to show him my jumping, shuffling and boxing that I’ve been practicing.
My session started off with an re-evaluation and then we worked on my skills. I just ran out of energy by the end I guess. I was on the last exercise (boxing) the third set, the 8th punch out of ten and for a split second I felt like I hit a wall. All I could say was “ I can’t” and I froze completely up. The therapist had to catch me as I started to fall to the side. During these episodes, I can see, hear, move my eyes and quietly say some words although it’s not always clear. Sometimes, I'm unable to speak at all, my jaw locks up. Otherwise, my body is tight as if frozen in place. My muscles are all activated and completely stiff. This lasted for several minutes and then it’s as if someone switched a switch and my body goes completely limp. The paralysis now kicks in! The therapist and my husband quickly try to reposition me to a comfortable looking position. At the paralysis stage, I am no longer to say "clear" words. I have tons of thoughts going through my mind and try to say things, but no one understands me. My eyes, slightly water up with frustration and sadness. My doctor asked my therapist for a video of the freezing and paralysis attack during my session, so that was being recorded to determine the next medical step at this point. As I laid on the floor of the therapy floor, other patients walked around me to exit. The paralysis lasted 15-30 minutes and then out of the blue I had a seizure (been 7 weeks since my last one). My seizures were cleared to be non-epileptic (PNES) at this point. Typically, I can feel it coming even if I am having paralysis. But, this one came out of the blue. It came fast, hard and I think it only lasted seconds to maybe a minute. My seizures are usually longer lasting. So after trying now to calm my breathing down, I continued to lay there, I did have a little movement in my fingers/toes/head. So if anything positive came from this, the seizure shook some movement to my limbs. The therapist and my husband lifted me up to place me in my wheelchair and then I was placed in the car. As we drove away, tears fell from my eyes. I thought I was really past the seizures at least and it came on so sudden. I just don't like how I don't get any warning signs for my issues anymore. It makes me scared to do anything! I'm just not the type of person that can just sit in bed all day long and see the beautiful weather and do nothing day after day. I feel so helpless sometimes, especially when they are moving me around and placing me in and out of the car.
Today, is a new day! After resting yesterday I woke up and was able to walk to the bathroom using a cane. I have more resting to do, but I will get back to walking without anything maybe by tomorrow hopefully. Like I said, it was a bump in the road. It was a triple threat: freezing, paralysis, and a seizure to end it. So, it was one of those over-sized speed bumps. I don't want to go over those anytime soon.
Side Information:
With Functional Neurological Disorder (FND), some patients do suffer from paralysis. However, this year I was diagnosed with Primary Periodic Paralysis (PPP), it is a rare genetic Neuromuscular Disorder caused by mutations in skeletal muscle sodium, calcium, and potassium genes. There are about 4,000 to 5,000 diagnosed individuals in the United States that show some sort of muscle weakness. There are even fewer people who show full paralysis like myself in the U.S, yay me! Each person with PPP, has a set of triggers, but mine seem to be linked to exercise fatigue and I also drink a solution a liquid potassium during the day. I have to cut walks and any form of "exercise" very short. Even during therapy, I sit between each activity because he is aware of my condition. There is a high percentage of people with PPP to show Permanent Muscle Weakness (PMW) as they get older. So between having FND and PPP, having continuous maintenance Physical Therapy is so important.
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