The BSE cattle epidemic made people feel insecure in 1998. The newspapers came up with a horrific scenario: the Creutzfeldt-Jakob disease for people. Barbara and Jürgen don't worry too much; they are happy to fly to Fuerteventura. Barbara has come up with a lot to give her rusty married life a little pep. But her husband Jürgen does not go with them. Even his wife's fitness efforts are more of a strain on him - actually a sporty type. He feels limp and drained, and he finds the glaring sunlight of the Canary Islands uncomfortable. One day his legs fail while surfing the waves, and he almost drowns.
Just a one-time incident? The couple has no idea that it will be their last vacation together. Nor what strength will be required of them in the following twelve months. Because the diagnosis is: Creutzfeldt-Jakob disease! At that point, Jürgen was already living in his own world. Barbara has to deal with everything on her own.
But she knows it’s no time to cry!
Barbara Ludwig describes the adventurous, sad, and often comical experiences of the course of the disease from both her and her husband's point of view. This leaves the reader a lot of leeway for their own considerations.
With an epilogue by Prof. Dr. Hans A. Kretschmar, Head of the Center for Neuropathology and Prion Research at the Ludwig Maximillian’s University in Munich. And A recent epilogue by Prof. Dr. Inga Zerr, Head of the dementia and prion research group at Dept. of Neurology, Georg-August University of Göttingen.
First published in the series Experiences at Bastei LÜBBE
The wave‘s rolling towards me, gathering height just in front of me, its undertow tugging at my feet while its massive weight is about to crash down on me. My body stiffens in anticipation and a tingling sensation spreads through my belly. The seconds drag while I make myself wait before giving that powerful spring forwards, before jumping into the cresting wave, using all its force to speed towards the shore, my body gliding through the water.
It didn’t happen. No jump. No gliding. The command from my brain didn‘t reach my legs. That perfect interplay of what the mind wants and what the body’s muscles can do, failed. The curling wave had its way with me. The tower of water overwhelmed, overpowered and engulfed me. It made a plaything of my body, tossing it around like a ball at the water’s edge. There was a fleeting, but entirely false, sense of security before it resumed its little game, lifting me up in what seemed like gigantic arms, whirling me round and hurling me across the waves. I gave in, I lost all sense of where I was on this high speed roller-coaster.
The rough sand scraped painfully against my skin as I tried in vain to make my legs work, to get my head above water again. Beaten by the waves, I thought to myself, and resigned myself to my fate. The sea-salt will help my corpse disintegrate and I’ll be rocked by the waves forevermore. OK, so be it, I’ll just give in and become part of you, you waves.
My leg – what the hell was wrong with it that day? It was like jelly. Why?
Mr Ludwig? I look up, dragging myself away from my thoughts and back to the present. The ward doctor is standing near me and presses a hefty-looking questionnaire into my hand. I‘d actually fixed an appointment weeks ago for a check-up with a senior medic known to be a stroke specialist. And now, here I am, standing in a hospital corridor with all sorts of consulting rooms going off it, ready for the first treatment and getting some initial tests done.
“Please note down on this form, as accurately as possible, everything about your problems. To make a diagnosis we do need to know about anything out of the ordinary. So if you could fill this out before we do the other checks.”
I take the papers and look around.
“At the end of the corridor you’ll find some chairs and a table. There’s plenty of light near the window.”
He‘s pointing to a seating area. I look at him. He’s in his early thirties, his gelled, sandy hair standing upright, swept away from his forehead. He could be my son. I feel old. I desperately need to sit down. There‘s a light blue plastic chair at the table. I glance at the magazines and information booklets, neatly stacked in two piles.
“Every second counts for a stroke victim. Every link in the rescue chain holds firm!” says one of the glossy brochures. On the cover is a picture of a team of doctors and paramedics in red uniforms, laughing as they step out of a helicopter, looking as if they’ve just been on a trip into the mountains and are off to raise a glass and have a bite to eat together.
I’m seized by a feeling of panic. For a split second, all I want to do is to run. Just go, my inner voice tells me. Then I say to myself: Who do you think you are? Got the shits, have you? What are you? A girlie? A sissy? A complete drip? A dork? A wuss? A baby, or what? No, I think to myself. You are a fifty-three year old man.
I put the paper in front of me and ponder. It’s hard to set out in black and white that something just doesn’t feel right anymore, that things have got more difficult.
Eventually I start to write:
Feeling of confusion on getting up. A swaying feeling. Almost keeling over. Don’t feel safe walking, walking with the legs apart in a rolling gait, as a precaution. Hypersensitive feet. Almost painful to walk on gravel. Going upstairs. Feel unsure about the first step, OK after that but the feeling of uncertainty stays. Leg muscles feel weak, particularly the calves, hard to take the weight on one leg only.
My legs sometimes buckle at the knees.Very hard to move in confined spaces. It’s easier outdoors. I have no trouble riding a bike and can sometimes go easily ‘no hands‘. If I push myself, I can cover long distances. I can even manage to spend quite a long time in a crowded store but find it really tiring. I get out of breath quickly. If I lie down, I usually recover quickly. I sometimes nod off in the chair during the day. Sitting like this only brings a partial recovery ...