I grew up in Tennessee, USA. In 1947, I was about 6 years old. It was difficult to have a diagnosis at this time because there was so little known about it. The doctors would say I had the “Cochran Madness.” The doctors would tell my father that once I was no longer mad, I would recover. In a few days I would recover as that was the normal process for periodic paralysis.
In 1953, I was about 12 years old. I was at my uncle’s house water skiing and then I laid down on the couch in front of the window AC unit. Then, I could not get up. In those days we did not have telephones. My family drove to my father’s house and discussed with him that other family members had gone to Vanderbilt University Hospital. A few years before, my cousin was not moving or speaking and went to Vanderbilt. One doctor said that he had passed away. Another doctor sad he was still in there. They held a mirror up to his face and the mirror fogged. Then, they knew he was still alive. I was sent to Vanderbilt, at that time, and I stayed a week in a ward with 20 other beds. That’s another story within itself. Some patients were young like me and others were in their 80s. Everyone had something different. I was properly diagnosed with periodic paralysis and was given a diuretic to hold the potassium.
In 1959, a company in Cincinnati, Ohio got a patten on an effervescent potassium tablet.
In 1971, while living in Cleveland, Ohio, I came down with the flu that caused a paralysis attack. I was taken to the hospital and there the doctor told me I was on the wrong medication. He said I needed to be on the effervescent potassium tablet. I went on to have a mostly normal life, working and living with very few attacks and having to take very few potassium tablets over the years.
Blood tests did not exist until DNA, about the mid-1980s. About 2000, while attending PPA conferences, heard about the blood tests to diagnose periodic paralysis. After that, I had two separate genetic tests, at two separate facilities, that confirmed I have hypokalemic periodic paralysis, R528H, which is one of the most common and is in the calcium channel.
Around 2000, I was seeing a primary care physician in Orlando, Florida and at the time cholesterol lowering medication was big. Although, I did not have high cholesterol my doctor prescribed Lipitor, a statin. I was having some issues with my muscles while on Lipitor, so the doctor switched me to Crestor and I still was having problems. After about a year, I was taken off the cholesterol medication due to my muscle fatigue. I did have a short recovery period. Then, as time went on, I began to have a lot of issues with walking up steep inclines and walking up stairs. It continued to get worse over the years until I ended up in a wheelchair in my late 70s.
Having been active my entire life and then having to be in a wheelchair in my late 70s and now 80s is just unacceptable to me. My triggers are cold weather, extreme exercise, and high carbohydrate meals. The problem is that a lot of people will think you are faking it. Especially doctors and physical therapists. It’s important to find healthcare providers that will listen to you, and what you know are your limitations. You and your family have to be your own advocates. It’s important to research any medication that is prescribed to you, and to find a physical therapist that understands that repetitious exercises may cause more permanent damage rather than build up the already permanently damaged muscles. I have finally found a doctor and a physical therapist that listen to me. I continue to enjoy my retirement with my wife of 61 years.
