How I found out that I have the Post Polio Syndrome

How I found out that I have the Post Polio Syndrome

The idea of this blog came to me about 3 years ago. At that time I was but more busy than I expected and also it was the time were I started feeling more frequently fatigue and that was when my internal radar starting warning me about PPS (Post Polio Syndrome). But it took another 11 month to go to a neurologist. By the way the only one in Berlin who has the knowledge about PPS from his expertise and he is one out of three specialists in Germany for about 30.000 polio survivors living in Berlin.

It wasn’t  the first time I went to see this doctor and luckily he was also living in Berlin and not in another city. It was the year 2008 were I heard of him and went to see him too. My appointment was set for a checkup and diagnose regarding PPS. And he did a thorough checkup including a electromyography. Even while doing the checkup he told me that I am as far away from PPS as he is from winning a lotto jackpot. I told him if he´d ever win I´d come back for my share. We both laughed.

Many years back when I first came to know about PPS, which I personally think was quite late in my life, I was 31 years old and I thought it could happen but that it doesn’t have to and why should it happen to me. With this thought I ignored the whole issue until in 2008 I started feeling some weakness and exhaustion in my life. Luckily it wasn’t PPS. It was in 2019 when my new orthopedic doctor prescribed me a wheelchair to relieve my legs and arms from the weight I had put on my arms and shoulders for walking with crutches which I had been now doing so since 2006.

After 14 years I decided to have another checkup and I was happy when I found out that the doctor from 2008 was still active. I wrote him an email and got a call back from his secretary who scheduled the appointment with me. Actually I wasn’t surprised when he diagnosed me PPS. My internal radar had already told me but I needed another professional feedback based on medical facts. Before leaving his office I was about to give him my insurance card but then he told me that the insurance wouldn’t pay this medical checkup and that all costs are covered by a foundation for people with polio cases. I was positively surprised and told him so. He also recommended me to another Dr. who is an orthopedic close by another German city since he was a neurologist I would be needing also an orthopedic doctor specialized on polio and post polio syndrome for further treatment. Later it turned out that the other doctor had to be paid also on my own. There was no foundation covering this up for me. 

30 days after my 2nd checkup in 2020 I had an accident by falling out of my wheelchair with my full body weight on to my right shoulder. It really hurt and I wasn’t able to move my arm properly anymore. Every movement would be painful. A pain like if someone would prick me with a needle inside my muscle. Taking painkillers I went to the ER of a nearby hospital and had an MRT done which showed that I had torn my rotator cuff of my right shoulder and that I needed surgery asap. 2 weeks later I underwent a surgery and was out of work for 4 month.

After 2 years now since this all happened I have to admit that I actually new that PPS had hit me but beliving in my ability to move forward and not to stop kept me from realising that I need a different pace now. Not because I am getting older although my age mantra is: I am always 28; but because PPS teaches me now to look at life not too fast. Meaning slow down your inner train!

Kay´s Polio Story starts 1952

Kay´s Polio Story starts 1952

I contracted Polio at age 2 in 1952 and was never very athletic growing up but had a fairly normal life. I married  at 21, gave birth to 3 beautiful healthy children and worked first as a cosmetologist then went in to school to become a medical lab tech.. I ran a full pediatric lab for over 17 yrs and my legs just simply couldn’t do it any longer. I’m almost 73, dealing with PPS and enjoy chatting with anyone else experiencing this problem.. aging is hard enough but we are tough and we WILL handle whatever life throws at us!

My birth mother shot and killed herself when I was 2 and my brother was 4 and apparently my biological father couldn’t handle a 2 yr old crying so he gave me to a relative and kept my brother. No one wanted me then because I was crying for my mother and my brother so I ended up with 5 different families I a period of 3 months. Somewhere along the line I contracted Polio and was finally placed with my birth mothers oldest brother and his wife. Their children were grown and they found themselves with a sick 3 yr old. The day they got me I was taken to the doctor, then to the hospital and then sent to a Polio Hospital nearly 70 miles away where I was a patient for several months. I always felt that I had been a great disappointment to them but I am a survivor not a quitter!! 💕 I’m not sharing my story for sympathy, just honesty, ….. thanks!!