Transcription
When you are diagnosed with a rare disease like spinal muscular atrophy, the unknown can be scary.
For our parents, for our friends, for yourself. SMA is a life-threatening disease that restricts movement and reduces everyday freedom. Until a few years ago, there were no treatments at all for it and so many things seemed out of reach.
But what if life was still there to be enjoyed and the world is still there to explore? The Not a Lonely Journey Guidebook is the first travel guide written by people with SMA, created to prove living with this disease doesn't mean giving up on dreams and passions. And therapeutic journeys are not the only ones we can make.
My name is Kim. I'm 35 years old. I live in Mannheim. I've been diagnosed with SMA at the age of two. We went to the doctor with my mom because she had that feeling she can't explain and she don't know why she had it because as I was a child, I could walk and run very similar like other kids. We drove to a doctor. He thought I had type 2 of SMA. Yeah. And then he said probably I can only walk until I am eight. He said yeah, I can live until I am 21.
Since I was 16, I traveled on my own or together with friends and I spend my money on traveling experience. Not on other things. I like to explore other countries and learn about other cultures. I love meeting people.
I think my normal day, if I'm at work and I'm at home, I have to go to the therapy. Everything is planned because for a few things I need help because it's not easy for people with disabilities or people in a wheelchair to find accessible activities. That's the reason why we are doing Not a Lonely Journey travel guide to help and inspire other people with SMA.
Switzerland is one of my most favorite travel destinations. It's very accessible for me with the wheelchair. One of my best friends, Milia, she lives in Zurich, and we went to Rigikulm. It's a big mountain in Switzerland and we saw some people flying by via paragliding and then I said, ‘oh, it would be great if I could do this.’ I can't fly by my own paragliding because you have to run down the hill and then go up. So, he was the one behind me who ran down the mountain and I was looking through the universe. I think I feel like in a second place, I've never been here.
We did rafting, but there were a lot of people sitting outside the boat, and they hold me in the middle so that on every corner or in every waterfall we drove, I was protected by all the others.
Glamping was also a nice experience because we had the tent right next to the Zurich lake. I have a bed in my tent, so it's easy to transfer on the bed and I don't have to lie on the ground because it's not so easy for me to get back in the chair.
My caregiver most of the time is my husband, because we’ve known each other since 18 years, but I also go on travels with my friends, with my sister and other people.
One time in Paris, my wheel from my wheelchair broke up, couldn't use my wheelchair anymore and nobody in France could help me to fix it. If I use the train, I need a platform lift. A few times somebody forgot me - to pick me up - after train or forget to let me in the train.
The four most important things I take with me on every journey is the charger for my wheelchair, my smartphone, of course, my camera and the sleeping mask.
I don't have so many plans for the future because I'm not only living for the moment, but I'm living for now. I love traveling, I love being with my husband, my family, my friends, everything is fine. But as you know, some doctors said to me as I was a child, I don't know how long is it possible for me to travel like this. I will continue until it's not possible anymore, but I hope that so far in the future I don't have to think about it yet.
All what I'm dreaming for is what I'm doing next. I don't have so many dreams at the moment, but I would love to go to Canada because I heard it's very accessible destination as well, and I would love to go to Japan and to Hawaii.
I hope that the Not a Lonely Journey guidebook can inspire everyone from our friends and families to healthcare professionals to live more fearless lives and be open to new world of possibilities.
