Husband & Father
Hello and thank you for coming to learn about my story. I live in Idaho with my wife and two kids and am working to adjust to living life with my rare diseases. We now know that I have at least two, periodic paralysis and recurrent meningitis. I spend my days living and fighting the effects these known, and unknown, diseases have had on my life.
I have had periodic paralysis my entire life, but didn’t find out what it was until my late 30’s when it became disabling. My entire childhood I was called accident prone for getting hurt a lot, but we now know it was because I was weak from this disease. This included head injuries, broken bones, sprains, etc. My first paralysis attack was at 15 when my legs paralyzed in the practice pool in high school and I had to be rescued from the bottom of the pool. I had paralysis attacks over the years, but they were very sporadic so it was never looked into further until my late 30’s when they became daily. It took my own research and determination to figure out that it is hypokalemic periodic paralysis (hypokpp). We are still investigating the possibility of it also being Andersen-tawil syndrome and paramyotonia congenita. Thankfully I have been able to get on Keveyis, and this has limited the paralysis attacks allowing me to obtain a more normal life and begin working towards regaining my strength.
We aren’t quite sure when I got recurrent meningitis, but my belief is it is genetically caused, so I believe I have had it my entire life. My first meningitis attack was at 21 when I was attending my second day of the sheriff’s academy and appeared to pass out in class and was rushed to the emergency room. The medical field is so unaware of meningitis that I was sent home saying I was just sick, then had to be rushed back the next day. They took a spinal tap when I returned and verified it was viral meningitis and admitted me for two weeks of IV antivirals. This began the end of my law enforcement career.
Over the years I had many flare ups of meningitis, but I wasn’t aware that is what was happening because I didn’t know I had recurrent meningitis yet. In my early 30’s I was rushed to the emergency room with the same symptoms as when I was 21 and the infectious disease doctor had seen recurrent meningitis before. When he heard I had experienced viral meningitis before he ordered an additional test and verified that I had recurrent viral meningitis (Mollaret’s meningitis) and that I would have recurring meningitis attacks for the rest of my life. Over the years I have obtained an allergy to the antivirals so I have to try and manage with natural remedies. When it flares up it makes my periodic paralysis worse and I usually have a paralysis attack again, so I wonder what the connection is there.
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