Hi, I'm just passing on some tips from things that we found useful for our boy Frankie. It's mainly looking at things for when muscle deterioration means that it's harder to do the things they've always done.

EZ Vision Goggles - for when Frankie was ill or couldn't sit up to watch t.v, we found these eyewear video glasses which meant he could watch tv lying down or in any position. You just plug them into a dvd player, or ipod and you can watch films. We found it really helped with long journeys. My brother used to travel lying down on a stretcher because it was more comfortable and he could plug the glasses into a portable dvd player and he'd be happy watching films all the way. If you'd like to see a picture of them, have a look on my page. We also had a tv on the ceiling which was fab, and that was more sociable because we could all join in and watch a film on the ceiling together, but these glasses were so portable and great for that element.

Keyboard - Also, there came a day when he was unable to use a keyboard, he simply used an 'on screen' keyboard, which meant that he only had to move his hand a small amound on the mouse to reach the different keys on screen. He had a seperate clicker switch for the click element of the mouse. He loved this set up because it meant he could do things quicker, he'd be on the computer for hours! Some computers already have this in the accessories folder, but if not, have a look here:

Gamestation - Our brother loved playing the playstation but it got difficult for him to press all the buttons on the controller. When someone told me that he might not be able to play the playstation when he was younger, I found it really hard to accept. I thought it would ruin his world, as he loved playing on it so much. But when the time came, he simply replaced it for another thing he was good at. I couldn't believe how gracefully he took things, I didn't expect it, and I think you'll be surprised. It's either fight or flight I suppose and if you want to enjoy life you simply can't stay upset for too long. Anyway, we wrote to a charity who put in some adaptions to the controller, making the buttons come to him. For example he had good movement with his thumb so they moved 3 buttons there. He also had movement in his feet and head so they moved some buttons there. It was an amazing day when he was able to play again, it was like he was 'enabled' rather than constantly disabled. If you want to know more about the device, contact me or see my pictures below.

Stretcher - many people won't need this. But Frankie's scoliosis was so bad that he found it difficult to sit up for long periods of time. So for long journeys etc we got this stretcher. It was the best thing we ever got. It meant we were restricted by time limits of comfortable levels, and enabled us to go on long day journeys that we couldn't do before. He also went to class in it a few times! Just because he was physically restricted, he wasn't ill, so he wanted to get around, but often had to get around lying down! I don't think many boys get like this but even if there's just a few that this will help.

Controls - We had a device from gewa that could control the tv, dvd, lights etc from his laptop. It got quite difficult when frankie coudn't turn the channel over himself on the standard remote. People have systems intalled in their house, but frankie was always on his laptop and it was difficult to use the systems they installed. They gave us this device that basically put all the environmental controls onto his laptop. It completely changed his life! He was able to do his own DVD editting, control all his gadgets etc. http://www.novitatech.org.au/product.asp?p=247&id=1842

We've also tried voice recognition software which was good but slower than the onscreen keyboard for frankie so he stuck with that. And I've heard that eye gazer is really good, where the computer can be controlled by your eyes! But frankie always had hand movement so didn't need that, he would have loved it though as it sounds very high tech and gadgety!

If you've found any of this useful or interesting, please let me know, I'd love to hear from you.

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OMG! Thank you so much for this post!!! Brandon isnt quite at this phase yet, but I know its not far. We are constantly looking for ways to improve on his life, and I really LOVE that you have put this on here!
Wow. We hopefully have a long time before we need all this (Wyatt is 2), but it is good to know what is out there.
thanks for all the info. You are a great resource.
Great post. Thanks for sharing.
All I can is...you guys are awesome!
What on earth did our dmd guys do before the computer?? So many gadgets and gizmos to keep them active and involved now. My son is 28 and has been able to hold down a full-time job(40+ hours a week) at that well-known, but shall remain nameless here, big software company near Seattle. Since he only has the use of 2 fingers he uses a HeadMouse to work as a software engineer. He uses a "non-invasive" sip-vent to breathe, instead of the ,not so popular now ,trach and vent set-up. I take him to work and set him up and he can drive around between his work station and other areas quite independently. A lunch aide does come in to help him for a few hours in the middle of the day, and I return to take him home. He can get a co-worker to call me on my cell phone if he cannot reach me by IM. We are looking into technologies that will help him become even more independent. Thank you for sharing!!! Ann

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