How has the disease affected you till now?

I noticed at the age of 13 that I could not see well at night. My parents made contact to a retinal centre. I was examined and quickly got the diagnosis. Usher syndrome was first diagnosed when I was 17. For my parents this was also a very stressful time. They have worked hard to help me.

 

How did you hear about TES therapy?

In the forum I set-up (rp-netzwerk.org) a member wrote about the TES therapy. This was very interesting for me and I immediately informed myself. I have found a physician who accompanies the therapy and whom I trust. I am very happy that this scientifically based therapy exists. For me, the underlying mechanism of action is very plausible.

 

How do you integrate the TES therapy into your daily routine?

Next to running my own business and family life  every day is naturally turbulent. My wife supports me a lot, also when it comes to the use of the TES therapy. This way I can manage the application very well. We have a firm ritual. Every Monday evening, when the children are in bed, I use the TES therapy while the evening news are on TV. This works also well when we are travelling.

 

What does TES therapy do for you?

It’s difficult to say because I cannot assess the progress by myself. It's like my kids, if you see them every day, you do not realize that they're getting bigger. It is similar when my field of vision changes. But I rely on the examinations and there the results are stable.

For what reason you can recommend the RI OkuStim?

For me personally, it is very plausible that the cells of the retina are activated by the electrical stimulation, thus the therapy is a good option for me. I am glad that there is an approved procedure and that I can do something against the progression. I think it is a pity that it takes so long in Germany for scientific achievements to find their way into patient care.

 

 

How do you find the handling of RI OkuStim?

Principally it works quite well. Sometimes the glasses slip or do not have the right eye contact, but with some patience it is no problem to use the TES therapy. At the beginning of the therapy the adjustment of the device was a bit complicated but I got used to it. If it does not work out right, you should not get nervous.

 

Is the application free of/ without complications?

In principle, yes, sometimes I have the problem with irritated eyes and more often a stye, but that can be treated well. When starting the treatment it is a bit uncomfortable for a short time but not painful.