Mobility, Sensibility, Ability – One Woman’s Life Living With Locked-In Syndrome

December 12, 2013 by
kati_now
BeautyHealthYour Stories

Kati van der Hoeven-Lepisto, a young and upcoming Finnish model, was left 95% paralyzed after a stroke, at the age of 21. Nineteen years later, Kati continues to live a productive and inspiring life in spite of her living with Locked-in Syndrome (LIS)., a condition where the patient is fully aware of everything, but cannot make their muscles move.

What would likely have killed most, has only fueled Kati’s desire to show that through pure determination, faith and perseverance anyone can make the best out of their life and live it to its fullest. Kati may not be a fashion model anymore, but she clearly is a role model and a Woman You Should Know!

In her own words, Kati gives us a glimpse into her life.


Kati as a model

By Kati van der Hoeven – Lepisto

Paralyzed! When people hear the word, they commonly assume that you cannot move your legs and that you don’t feel them either. But, there are many different definitions of being paralyzed. Actually every single case is different, mine is as such.

My muscles move, but I cannot make them move. Let me illustrate it like this: imagine that you are in a tunnel and there has been a cave in. The sector where you are is intact but you cannot get out. And the only link between you and the outside world is a tiny hole. So tiny that only a mouse can squeeze through. I am trapped in this tunnel and the only movement that I have equates to the mouse squeezing through the tiny hole.

I am medically 95% paralyzed. I can communicate using a computer with a special program, and I do have certain movements, but just enough to make me more than a vegetable. It’s important for me to share what I am going through, it brings me freedom. Knowledge dispels fear.

Tongue I cannot speak because orders from my brain don’t go fast enough to my muscles, and since the tongue is a muscle, I can’t move it enough to be effective. Sounds do come out, even very loud ones. Especially when somebody scares me, my muscles react and some kind of scream comes out on instinct.

Eyes Fortunately I have very strong muscles in my eyes, which is how I use the computer. I once worked in a post office during Christmas season. My job was to sort Christmas cards in boxes, each with a different postal code, city and country. I had to sort them FAST, all the time looking up, down, left and right much like how I use the computer today.

Kati uses her eyes to communicate with a computer

Eating After the stroke, I was fed through tubes. Out of all the effects the stroke had on me, this was one of the most HORRIBLE, as I always really enjoyed food. I was crying from the thought that I may never again sink my teeth into a juicy hamburger or let my tongue linger around an exquisite bite of pizza. I first practiced eating by chewing candy and fruits wrapped up in a cotton cloth. This would prevent the food from sliding down my windpipe. Part of the cloth would stay out of my mouth and then taken out of my mouth when I was done. This went on for about a month.

Since I cannot develop enough strength or power to chew well enough, all of my food is cut into very small pieces. The food cannot be too dry or too hard either. Liquids are extremely difficult to swallow because they go down the throat so fast. In the beginning the liquids were mixed with a tasteless powder in order to thicken them so they wouldn’t slide down the throat too quickly.

After all of these years, I am still learning to eat and occasionally choke. Just a few weeks ago I choked on a little piece of hamburger that was just a bit too big. My husband Henning had to administer the Heimlich maneuver so I could enjoy the rest of my burger!

Arms & Legs I can pull my arms a little. Just up and down. But it is very hard. I am not only fighting gravity, but also muscle stiffness. It is like having a 10 kilo (22lb) dumbbell wrapped on your arm. I can also pull my legs front and back, but very slowly, which feels like having an iron ball chained to your legs.

Muscles The one thing I have to deal with all the time is the muscle spasticity. You cannot imagine how unbelievably strong the muscles are and how hard they can get when they contract. These unpredictable contractions are a blessing somehow, for they probably are one of the main reasons why my muscles have not withered or wasted away in spite of me being confined to a chair all these years. I am able to help my aide when she lifts my legs by tensing my muscles; this makes me lighter, which makes it easier for her to move me around. I do feel my muscles; they ache at bedtime after my daily exercises.

Senses My skin has become over sensitive to the touch. Nurses and aides have had to learn how to handle me. My clothes have to be from materials that feel good on my skin, especially since I am unable to shift or change my position. Even the best bed sheets can feel like rough paper. I feel everything very well. If a fly walked on my skin it would tickle me mercilessly.

Kati and husband HenningFacial expressions At the beginning, the doctors said that I would not get any facial expression back. But I worked hard with one of the best speech therapists in Europe and I got my wrinkles, dimples and expressions back. Not many women would try to get wrinkles, but the fact that I can smile, laugh and cry is worth it!

Hearing I hear extremely well. I think my hearing is heightened because I cannot turn and look at whatever has made the sound. When I am sitting in the office writing on the PC I can still follow everything that is going on in the house just by the noises.

Memory After the stroke my memory was very good. Since I could not talk or use any kind of aid to communicate I learned to memorize everything. All the details of every schedule – TV programs schedules what time, what channel, etc.

Brain The brain is a funky thing. It is a thinking organ that learns and grows by interacting. Mental stimulation improves brain function and actually protects against cognitive decline, just like physical exercise does for the body.

The human brain is constantly able to adapt and rewire itself. Even in old age it can grow new neurons. When I had the stroke, doctors said that after 10 years the game is over and nothing could get better, but nowadays they know that there is no expiration date. Most age-related losses in memory or motor skills simply result from inactivity and a lack of mental exercise and stimulation. In other words, use it or lose it. I am a living proof of this.

I know it is difficult to understand, even after all of these years I am in awe of what humans are capable of that we don’t realize, understand or appreciate.

Sometimes I think about how much easier life could be if I could just speak, or if I could at least move my hands and do some things for myself. But I do not dwell over these things. I rather sit in my chair and enjoy the beauty of life. Savor the wonder of how it all connects. Relish the fact that I still have the ability to share this world, this life with my husband, family, friends and you all.

kati_pooch


You can read more about Kati’s life experiences on her blog and follow her on Facebook.

  • Tara

    Reading Kati’s story makes one realize how much we have to be thankful for. She is one incredible lady!

  • Jessica Voigts

    WOW. THank you for sharing!

  • Glenn Davey

    Damn… I’m gunna shut my stupid mouth and get on with life…