Hansje Janssen

Since 2003, Hansje Janssen has been living with a rare degenerative muscular disease. Ever since then, life has taken many unexpected turns. This is her story, told in her own words.

First, I would like to give a short introduction about who I am. My name is Hansje Janssen, I am forty years old and since March of 2003 I have been suffering from a bizarre progressive muscle illness. The symptoms started just ten days after I gave birth to my beautiful son. Since the beginning, my illness has been hard to diagnose. It has also developed in ways that were not expected.  This makes the future very uncertain, which is very unpleasant.  The doctor gave me, maximum, one year to live in April 2004. As of now, I am living through things which, by far, I didn't expect to live through. 

Until the birth of my son I worked as a physical therapist \ chiropractor with three employees and my own practice. Beside that I had played field hockey for 15 years at the highest level. To that "rich" life, together with its most beautiful moment (the birth of my son), came a brutal ending!  

A little light in the darkness

Since recently, though, there has been a little light in the darkness. The MyTobii came into my life.

I was surfing on the internet and I accidentally "bumped into" the MyTobii. Until that time I had used a head mouse for communication. But after starting to use the MyTobii, I started feeling as if I was liberated; a feeling I still have.

If you can't talk, you are captured within your own body. I once described it this way: It feels continually as if your head is a high pressure pot, filled with thoughts, opinions, emotions and feelings, at the point of exploding. Now with the MyTobii everything can come out! With the head mouse I had only used the most necessary words. I forced myself to say the most I could with as few words as possible. Now I am able to type the whole day, in a comfortable position, without getting tired. In my own family the biggest change is (actually, for the first time) that I can talk with my son!!! I cannot describe with words what that means to me. 

Active in family life again

When all my typing-time is not only spent on the most necessary communication, I can participate almost normally in my family life.  I can help with raising our son. It is not only my partner who has to be the boogey-man, because now we raise him together, sharing the good and the bad things.

We can have family conversations again, and I can have normal conversations with my partner. We now realize that eighty percent of our arguments were because of communication difficulties. It is very pleasant to be able talk extensively to one and other about our days. We can now easily discuss about how we are going to deal with the things that come our way, as well as all the things that "normal" couples talk about. 

Beside all of that, and because I can communicate faster than I have ever been able to with a head mouse, I have the time to take a large part in the organizational work involving my family. The organization of the nurses who come every day to help, the financial administration of the nurses and the others who help me and a large part of the private administration; lists for groceries, email contact with all kinds of institutions, the schooling of my son, internet banking and so on. In all of this I can now support my partner, who is very busy, as you can imagine.

Despite all of my activities that I described above, I am still able to intensify contact with family and friends through email and chat.  The text message function could contribute to this, but unfortunately it does not work just yet. I can work with the MyTobii in any relaxed position I choose, and I can actually look people in the eyes again while talking to them. 

Even with reading glasses, which I really need nowadays, the MyTobii functions very well.  It is advisable, however, to buy glasses with lenses that curve as little as possible to minimize reflection. 

MyTobii on the wheelchair

The latest improvement is a mounting system for the MyTobii for my wheelchair. That is another big step, because the contrast between being with, and being without, the MyTobii had become very big. Now, for the first time in four and a half years, I think, I am able to talk while we are visiting friends or family. I can participate in conversations and discussions. I can make jokes again! That, by itself, is amazing; people laugh with me again!! It is no longer only me laughing within my head about my own jokes. So, being free to get out and go somewhere else, like I used to, gives me much more joy then I had before.

The company that made the MyTobii has now developed a portable communications device. This would make it even better; to be able to go anywhere, to be able to use the MyTobii, or the new device, anywhere, because it has a battery.

I hope that what I have written above inspires you to inform and advise others about how the MyTobii can help anyone in my type of situation to have an enormous improvement in their quality of life.

As my son says, "Tobii is Mum's best friend!!"

October 2009