Diary September 2006

What seemed to be impossible to me and many others happened anyway! an ERGOTHERAPIST suggest to me to learn how to wash myself standing up at the sink, while for years now I took a shower because standing up, to me, was no option and also taking a shower was much easier because I could never wash my bottom standing up.
Ever since 3 weeks I am standing up at the sink and can notice that quiet clearly with my walking exercises.
To stand goes so much easier than before. The last pole in our bathroom is just standing there and it does not have to help me anymore.
So now I have to stand on my own two feet and my standing exercise works better for me doing something. I used to just stand doing nothing for 30 minutes and now I am washing myself standing up and that is quiet difficult when you are used to sitting (nowadays) with everything you do.
Last Thursday a logopedia-therapist discovered that pushing with a little stick against my tongue stimulated me to push back and make my tongue move, action in my tongue after years being a lifeless thing in my mouth.
Also exercise with my FACIAL-FLEX* keeps my face moving, also the lifeless part of my face, so my face is slowly getting straight again.

love, Marjan



Reading the story of Julia Tavalaro the people of the LIS-group in Germany were inspired and start to move. Unfortunately the book is hard to get because it happened in 1966. Maybe you can still get an English version ("Look Up for Yes") at Amazon.com, but the Dutch version does not exist anymore.
The result of her was the same as it now is with me and in Germany LIS-people were walking with rolaters(!)
Also the chairman used to be LIS and he spoke with the help of a microphone. Also there were people who were LIS for many years, they also started to move with the help from others with the same result.
Off course you can keep some LIS-things such as low temperature etc but everything will be more bearable. So 50 years ago this disease was invented to be the end of your being but everyone has to sea it as a new start, you are like a big baby and have to learn to use your muscles again and slowly learn to regain your strength again.
There are enough reasons to help this syndrome out of the world because no human being has to be a prisoner of his own body anymore.