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Usher Syndrome

What is the Usher Syndrome?

The Usher Syndrome the most common condition affecting vision and hearing as well. It is a rare genetic disorder which is the main cause of deaf-blindness.

What are the symptoms of Usher Syndrome:

Symptoms of Usher Syndrome include:
– deafness or increasing loss of hearing
– Retinitis Pigmentosa
– difficulties in balancing
– tunnel vision

Usher Syndrome is a various condition in that the degree of severity is not connected to what clinical type someone has.

Usher Syndrome is genetic. It is a recessive condition, meaning that both parents must carry the gene in order for a person to get this syndrome.

Normal vision vs. Usher Syndrome

Usher Syndrome can divide into three clinical types:

Usher type 1

People with Usher Syndrome type 1 are born profoundly deaf and begin to lose their vision in the first years of life. They are impaired in their ability to learn how to walk.

 

 

Usher type 2

People with Usher Syndrome type 2 have hearing loss. They do not seem to have noticeable problems with balance and begin losing vision in the second decade of life.

 

Usher type 3

People with Usher Syndrome type 3 are not born deaf. They experience a gradual loss of hearing and vision.

 

What to expect from Usher Syndrome

Nowadays Usher Syndrome is not a curable disorder. The best treatment includes early diagnosis, so that educational programs can start as soon as possible. Treatment may also include the use of hearing aids, assistive listening devices, implants, other communication methods, orientation and mobility training and low vision or Braille services.

 

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Highlights from our trip to Berlin

This short video shows some of the best parts of our day out in Berlin. We visited many different places and used different forms of transport to get around the city. We visited the Museum of Photograpy and enjoyed a guided tour, if you visit Berlin I recommend that you also try and visit this museum as it is very interesting. After the tour we split into two different groups with one group visiting the Brandenburg Gate, the Reichtag (German Parliament), Alexanderplatz, the Holocaust Memorial and Potsdamerplatz while the second group visited the Berlin Wall Memorial. Stefan explained aspects of the site to the group and then participants were able to visit the exhibition about the wall. After enjoying learning new things we were allowed some free time to relax in a cafe and buy souveniers of our trip to the city.

 

Thursday, 22.02.2018

Another day in Hirschuch began after the trip to Berlin, everyone semed to be still tired but happy. The tasty breakfast helped. The programme started with the presentation of the posters we created on Tuesday. The presentations were emotional and there were some very interesting discussions. Then we had a short outdoor activity based on self reflection. After that we devided into two groups and had to discuss in a friendly way the positive and negative perspectives towards the other group. After those reflection activities we had lunch break. Some where wiriting the blog, some were playing human table soccer and others were preparing the culture evering. In the afternoon we started with discussing the topic “How to make a viral video”. After we gave our oppinons we saw some videos. Then Stefan showed us, how to make a video in the movie maker. We split again into two mixed groups. Our task was to plan a promotional videos, but we didn’t finish it before it was time for the national reflection groups and dinner. The evening programme started with the cultural evening of the hearing people. They made some funny sketches, then we saw the videos of Malta and some ones from the first day. We also played several funny games. Everyone had fun in the evening.

 

First Day in Hirschluch

 

We started our day exploring the venue with a very funny photo rallye. In this picture you see, how we presented our outcomes.

 

Then we formed four groups and thought of tasks for the others.Below you see, how it ended…

 

We had fun, fulfilling the tasks. Maybe you can guess, what we had to do (see in first and fourth picture)

 

In the video you see, how we hid little notes, where we wrote down the tasks for the other groups. We enjoyed collecting them. As you can see, everybody wanted to be first. Some impressions of the fullfillment of the tasks is added into the video.

Hirschluch 19-02-2018

This is the first time I came to Hirshluch as well first time in Germany. After the breakfast in the morning, we had our fist activity, which is based on exploring the site and we did like a type of treasure hunt, but finding a specific location that relates to the photos we got, and if we find it, we make a group photo.
Second activity is more of a game which is very similar between capture the flag or a game that have the similar rules as paintball, we splitted in 2 teams, the attackers and the defenders, the attackers will take the ball from the defenders and get back to their zone. Although its fun we spent a lot of time explaining about the game and the rules.
After that we had lunch and we rested for an hour, before the next activity. The next activity is quite insteresting: we split into small groups and we have to create tasks for the other groups, one task for each group,as we wrote the tasks individually, we went out and hid the papers somewhere so the others will find. Then we had some practice from these tasks that the other groups made and after that we went inside and did the tasks.We really enjoyed alot, but I really love this place because I made some new friends and hoping for more.
Anton

Berlin, Alexanderplatz

While we were planning our trip to Berlin, the sign for “Alexanderplatz” appeared. It shows the TV tower itself with the sphere and the antenna on top. For the amusement of all, the middle finger is used to imitate the antenna. Especially among the German participants a discussion about hand forms in German sign language started, because one does not show the middle finger like that in general. But despite this fact, the sign for “Alexanderplatz” is actually used like this. In the beginning some people tried to avoid this hand shape and described the TV tower differently. But later the sign “Alexanderplatz” was more and more established.

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„Werwölfe von Düsterwald” – Werewolves of the sinister forest

WerewolfSigns

On monday we played „Werwölfe von Düsterwald ”. It is a group game with different characters distributed randomly to the participants. The plot takes place in the village “Düsterwald” in the middle of nowhere. In several day and night phases the werewolves (half-man half-wolf) try to kill the other players (in general harmless citizens, witch and seer) who fight together for their survival, not knowing who is who.
Throughout the day phases the citizens have the possibility to accuse potential werewolves, who are getting killed by vote and reveal their identity before they die. This way the population of “Düsterwald” is more and more shrinking – or in favour of the good or in favour of the bad ones. An exciting fight for survival goes on whose end is unpredictable.

game

Playing this game, that is based on communication and interaction in the group seemed to be a big challenge. While in a completely hearing community the day and night phases are structured orally, we had to invent a way to let everyone know whose turn is now without using spoken language. The fact, that during the night phases the players must keep their eyes closed, even excluded the possibility to use signs.

werewolf
So someone came up with the idea to tap on the floor, so that everyone could feel the vibrations. The number of taps corresponded to the character that was supposed to wake up (once for werewolves, twice for the witch, three times for the seer and so on). During the day phases a mix of signs, mimic, gestures and other nonverbal elements made communication possible and surprising easy.
The deaf participants enjoyed having the advantage to communicate in spite of some differences faster among each other than the hearing persons from different countries and the interpreters. The game became quite dynamic, because the deaf players discussed so quickly that the interpreters could hardly follow their thoughts and had been taken over by the answers of other deaf people who understood the others before the interpreters could react. Thanks to the usage of simpler signs and natural gestures the communication became suitable for everyone.