Please login to post a response.

• What can we physically do to help
• Posted: 2008-02-16 18:30:45 By Madison D
• Madison is 12 years old and has RP since age 9. I have written about her future (Vet.) but now my question is 'What can I do to physically help her' such as rearranging furniture etc.. We only want to keep her life as "normal" as possible. Does anyone have suggestions that have been tried and proved?
  Thanks! Jan (Madison's mom)

• Re: What can we physically do to help
• Posted: 2008-02-16 18:53:12 By Jonathan R
• Colors are important. Bright colors with contrasts help for noticing things.
  
  Remove things that stick out, like low lying tree limbs and such.
  
  Get her a compact, yet powerful, flashlight to keep with her.

• Re: Re: What can we physically do to help
• Posted: 2008-02-16 19:14:25 By Madison D
• Thanks, John. Your message helps. I know when we camp, she always wants a flashlight in the evening but I didn't think to get her one for her own. Colors were something else I hadn't thought of... thanks again! Jan

• Re: Re: Re: What can we physically do to help
• Posted: 2008-02-16 19:24:36 By Jonathan R
• If you want to get an idea of what it's like, then put on a pair of really dark, wrap-around sunglasses that have really scratched up lenses. Then, cut a cardboard toilet paper core in half, and tape the two pieces to your glasses, to simulate the tunnel vision.
  
  Now, you can never take them off, no matter how dark it gets or how many "obstacles" you have to navigate through at any given moment.
  
  Trying to cope with that simulation should help to "put you in her shoes" and get an idea what it's like. Or, at least, that can be something that you can keep in mind for considerate visual.

• Re: Re: Re: Re: What can we physically do to help
• Posted: 2008-02-18 14:10:25 By Madison D
• Thank you for this idea. I have often wondered what the world looks like through my daughter's vision. I often ask her,"Can you see those trees?"etc... She tries to help me understand. I will try this and be able to share with her. Thanks for caring. Jan (Madison's mom)

• Re: Re: Re: Re: Re: What can we physically do to help
• Posted: 2008-02-18 14:27:25 By Jonathan R
• It's confusing for "normal" people to understand how a person can see something clearly in one situation, yet be practically blind in another.
  
  I think on of the biggest problems for RPers that still have decent central vision is actually "finding" what their looking for. As for me, once I can find what I'm looking for, then I can clearly see what I'm looking at, as long as the light level is bright enough that is.
  
  So, in my current condition, it basically means that I can do anything that anybody else can do (in good light, that is), it just takes me a lot longer to be able to do it, especially when I'm physically interacting with things that are very close to me.

• Re: Re: Re: Re: Re: What can we physically do to help
• Posted: 2008-02-18 19:23:59 By Michael P
• Madison,
  If you try the glasses you should probably block off the top and bottom also. I know everyone measures field of vision in the number of Degrees of periferal vision a person has. I yhink most people not affected with something like RP don't realize that the vertical field is also dinished. I personally find that harder to deal with than side to side. If I walk looking straigt ahead any thing from a small bump in the pavement to a three foot child becomes a trip hazard.
  Good luck, Mike

• Re: What can we physically do to help
• Posted: 2008-02-17 12:17:41 By Darran Z
• Jen,
  
  You may want to contact Hadley School for the Blind and take one of their "Adjustments to Blindness" class. This is a distance education school and free of charge to those who qualify. They offer quite a bit of classes. This may be a start for you to learn and understand what you need to be prepared for.
  
  The term "normal" is very misconstrued in its definition. What is "normal" for me is not "normal" for others. Likewise, what will become "normal" for your daughter will not be "normal" for you. The key to remaining independant is not hiding from this but utilizing every resource available. That may inclue Braille, mobility and orientation skills (use of a cane which will lead to possible qualifications to a guide dog. Cane mobility is required before one can be considered for a guide dog). There are alot of resources out there and no one blind person is the same. What I need, may not be what your daughter needs.
  
  If she has the typical RP (Rod-Cone Dystrophy) you may not have to deal with the colors. John has an atypical form which cones are affected first (I think if I remember right). When I was your daughter's age, I didn't need anything because my issue was nightblindness. So LOTS OF LIGHTS was the only thing I needed. I had a fairly decent visual field and my visual acuity and colors were excellent. It was only until the past 10 years or so that I really experienced a rapid decline. In this stage that I am in, I would agree with John regarding colors. So you need to find out what yoru daughter needs are now.
  
  You will also likely need to consider situations for school and any assistance she needs as well.
  
  Darran

• Re: Re: What can we physically do to help
• Posted: 2008-02-17 18:13:23 By Jonathan R
• Actually, my central vision is pretty good. Although, I do need some pretty thick lenses nowadays.
  
  I think I once saw a another John R. who posted here. Maybe you are thinking about him.
  
  I was mainly referring to color usage as a means of helping to notice objects in your peripheral vision more easily.
  
  

• Re: Re: Re: What can we physically do to help
• Posted: 2008-02-17 18:53:50 By Darran Z
• Ahh..that may explain tings. You aren't the Jonathan R with chorodermia then? My apologize, and yes, the other Jonahtan has this.
  
  I can see where you are coming from on the colors. Now that I look back, I had difficulty picking out "shades of color" unless they were quite obvious. Otherwise, they were the same. So yes, I can see where you are coming from.
  
  Thanks for pointing out you are a different Jonathan.
  
  Darran

• Re: Re: Re: Re: What can we physically do to help
• Posted: 2008-02-17 19:11:00 By Jonathan R
• lol Well, actually, I am the JR that mentioned having a chorodermia-like "white-wash" on my retinal photographs. But my cones are still pretty good. It's my peripheral vision and night blindness that have been affecting me more than anything else.
  
  Maybe there are three of us Jon Rs wandering around in here. lol

• Re: Re: Re: Re: Re: What can we physically do to help
• Posted: 2008-02-17 19:15:13 By Jonathan R
• Well, actually, if many of my cones have also lost their pigmentation, then I guess they aren't doing so well after all. lol

• Re: Re: What can we physically do to help
• Posted: 2008-02-19 18:53:14 By Madison D
• Darren, Thank you for your time to send me great information. I am going to contact the Hadley school for further education. I truly am believing God is going to help Madison with her eye problem. I also know we are to do what we can to help her. I am so thankful to each person who cares enough to send us an email. I look forward to hearing from more caring folk. Thanks! Jan (Madison's mom)

• Re: What can we physically do to help
• Posted: 2008-02-17 16:30:07 By mary o
• Night lights really help me. I found the best ones for me are at Lowe's. They're called "forever glo blue night lights". They don't put off a harsh glare and aren't so bright. But they sure do let me know where the walls are! Glow sticks also are a great tool. These seem to be popular with kids. My daughter, 23, carries a small flashlight with her. The LED ones seem to be best for us.

• Re: What can we physically do to help
• Posted: 2008-02-19 14:38:55 By Katie V
• Hey there
  
  Madison is the same age as Meghan. We just make sure we have flashlights in each vehicle. We have lots of solar lights at our house as they can be brought in the house and are great sources of light ( they would be great for camping as you do not need batteries) We have not had to change our furniture as Meghan lives in the house so knows where everything is. We did buy Corelle plates ( they are amazing) Other than that we have not had to change to much. We are going to install more outside lights for the summer
  
  Katie