I'd like to thank everyone for the warm welcome, your advice and the good wishes.
Even though i feel understood by my family and friends - talking to people who are affected by this disease is different. When i'm reading your words i truly feel that we're sharing the same burden. I always hesitated to contact other people with ALS because i was afraid that this could feel like a terrible look ahead - related to my future physical condition. Now, after dealing with ALS for over three years, i'm more relaxed because my health situation seems to be relatively stable.
Mats, are you an artist? I'm looking at your avatar and wondering if it is a drawing your have done. If so, it is very impressive! So, so sorry about your ALS - hope it stays stable for a looooong time.
@Akjo Haha, I wish i could draw like this. My profile picture actually shows "Vertrauen" (german for trust) by Egon Schiele, an expressionist painter from austria. I like this picture a lot, so i decided to use it as my picture here. Glad you like it as well!
Thanks to everyone for your welcome. I'm currently extremely busy with studying for my exams, but i'm sure i'll spend more time on here when i'm finally done with studying for this semester.
You mention that you are still able to get out of the house but worry about falling. Is this the reason why you are pursuing distance education? If your post-secondary institution is within commuting distance of your home, would a walker or an individual to assist allow you to be on campus? My husband saw assistive devices as a loss of independence at a time when they would have actually allowed him to maintain his independence and it would be wonderful if you could participate in the university experience in person. I think Germany is ahead of many countries in terms of accessibility. Is that accurate? We have many people offering to help us we often difficult to identify needs eventhough we have so very many. Perhaps there is someone in your life who would like to check the university or even a bookstore for accessibility...?
The stress of leaving the house and every aspect involved in getting to the campus using crowded public transport, walking around on the campus etc., is indeed a main aspect for my decision to pursue distance education.
I feel neither completely disabled nor comfortable with walking on my own for a longer time or distance. A crack in the pavement could make me fall while a stairway may cause absolutely no problem. The slow progression of the ALS makes it even more difficult for me to accept this disease and to actually call myself “disabled”. These thoughts always prevented me from reflecting about assistance, may it be personal or through walking aids etc.. I’m very aware of how paradoxical this seems, but being afraid to use assistance because of fearing the loss of independence while it actually could improve ones own ability live autonomously, is a very common feeling to me.
At the moment, i’m quite satisfied with my educational situation, but of course distance education makes me feel a bit lonely from time to time, despite all advantages of the Web 2.0 - real life friendships are different.
I’m thinking about meeting some other students for studying together next semester. There are so many options of getting in touch and i feel this wish make new contacts more than ever before. I can hardly wait for the summer. Have been outside by myself today and i feel how much easier it is to walk when the temperatures are mild.
Look into AFOs Matts. They make walking so much easier and you can't see them under slacks. And there are some stylish canes out there which help with balance. Be careful with yourself, pride be damned. Injuries from falls can disable or kill lots of people all the time. It's a pleasure to meet you!