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• information
• Posted: 2008-02-19 12:13:36 By Elizabeth S
• Hi, my boyfriend has usher syndrome type 2 and i am looking for information on how i can help and be supportive. I care for him very much and want to know what i can do and what to expect.
  
  thank you

• Re: information
• Posted: 2008-02-19 17:30:47 By Irene K
• You are very kind to ask. Ask him what he needs. He knows better than anyone. But I would guess that he needs you to look at him when you're talking, to not mumble, to frequent brightly lit places and avoid places that are very noisy, and to encourage him to find the tools he needs to live the way he wants.

• Re: Re: information
• Posted: 2008-02-19 20:58:15 By Elizabeth S
• irene, thanks for the advice. I really appreciate it.
  thank you

• Re: information
• Posted: 2008-02-25 13:53:35 By Amanda C
• Hi Liz,
  
  Great to see you on here! It's a great place to gather and ask information, and also to share stories. :D
  
  Now with experience with our friend here, I have learnt some things to be aware of while I'm around him - I could probably explain more in person but will put some here for now. As he told you when he's tired, his vision is worst so expect that to happen if he's been working hard/not enough sleep etc...
  He doesn't like it when people besides him wave at him for attention because most the time their hands end up flapping right before his eyes and that is confusing! Just touch him or stamp the ground/bang the table.
  Sunny days - don't stand in direct path of the sun - it makes it difficult for him to see you signing.
  And most of all... night time. He's not as worst off as I, but you need to stand directly in front of him (as always) and FURTHER away than normal so he can see better. With me - remember you guys had to stand about a metre and half away in front of me so I could see?
  When he has had ciggerettes or alcoholic drinks, that can sometimes make it worse. I find that happens after having couple drinks myself - not sure why this happens lol.
  Hmm there was one more I needed to say but seem to have forgotten it... oh well I'll post again or email you if I remember it!
  
  Just another note, I find that having a clear yellow plastic (like those thin plastic A4 folders) over a piece of paper that I'm trying to read makes the words much clearer and easier to read. (Liz - I can show you this when you're down here ok).
  
  Hope this helps!
  AJ :)
  
  
  I'm sure you probably figured most of this out, and can ask me more qns when you're here.

• Re: information
• Posted: 2008-03-10 18:23:59 By Sarah D
• I'm 22 and I have US type 2. I have been with my boyfriend for 2 years now and can appreciate your concern for your boyfriend. Beyond the physical support you can offer (as mentioned in the other replies) emotional support is hardest and more complicated. From my own personal experience, the deterioration in vision has been somewhat of an emotional struggle as I slowly give up certain activities or avoid certain crowded places. Usher's has put a certain strain on my relationship at times and at first both my boyfriend and I denied that my condition was ever a problem in our relationship. We have both come to accept its impact since, and now we are very open in talking about how my limitations affect me individually and me as a girlfriend. I think it was a very important step for us, and I gained insight in how he felt about the situation. He has always been sensitive to my needs in crowded/dimly lit places and is sure to help me with curbs or steps, and now he understands more when I have a "bad day" (maybe I'll bump into something or be too tired from reading).
  
  When I was first diagnosed at 17 my parents were a little paranoid and started to hold my hand when crossing the street (literally and figuratively). I had to remind them that having US meant I have limitations but that I am capable of doing some things for myself. I also think that some people have let US define me (like I'm a blind person over I'm a person with vision impairment- get the difference?) Just make sure that you don't do that to your boyfriend; there is infinitely more ways to describe and define him than just having US.
  
  I endeed up writing more than I thought I would but the two main points are 1) having an open line of communication to understand what he's going through and 2) not letting US be a focal point and defining him.
  
  Best of luck to you both!

• requesting help
• Posted: 2009-08-05 01:19:49 By timothy g
• my fiance has usher types 2 and i am wondering if there is any advice that anyone could give on how to help him deal with the issues that come along with it? he gets very frustrated with himself, and he feels like he is letting me and our kids down at times. please help.