Our son, Derek, just turned 12 and we are trying to decide which powerchair to go with.  The hospital has suggested the Quantum because it is not as big/heavy as the Permobil.  The Quantum is made in PA, so if parts are needed they can get them quickly.  I guess with Permobil it takes a long time to get parts. I was hoping other could share their experiences with either one to help us make a decision.  

I also wondered if any of your boys wear braces or ankle supports during the day?  Our son's PT at school inquired about them with his doctor but was told they do not do that for boys with Duchenne.  I understand not using them for walking, but he is sitting most of the time at school.  His left foot has become tight and we were hoping to find something that may help a little.

Thanks for your input.

Lisa

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My son has the Quantum Q600 and we have been happy with it. He has had it for about 2 years and we have had no problems with it at all. My son wore his braces during the day for a while after he broke his leg, that is actually the only time he ever wore them. I think that I have heard of boys that have worn them during the day in their chairs on a regular basis.

My son did some serial casting a few years ago and it helped a lot with this range of motion. They cast their legs and then recast them once a week and give their heel cords a little more stretch each time. I think my son went through 3 rounds on both legs and then a fourth on the tighter one.

Susan

Susan,

May I ask if Jonathan was still able to walk when he had the serial casting done? I know he is 20 or 21 and doing really well. Our son (11 yrs now) had serial casting once before we had the DMD diagnosis, and again the next year at age 6 1/2. It really did help at the time, but we have been dissuaded by the neurologist from doing it again, as she is worried that it could lead to an irreversible weakness from the temporary immobility. We can't do it right now anyway as Simon is part of a study and has to do the 6-minute walk test. Was just wondering about Jonathan's experience as an older guy.

Andrea

Andrea,  he was 15 or 16 and was still walking and he was able to walk through the house in his casts. His casts were really light. He does still walk some even now, he can still take the few steps needed to get from the chair to the toilet which is about 10 feet. I know it isn't much, but it helps and he is fighting to keep walking as long as he can.

 

Thanks for the reply.

Keep on fighting, Jonathan and Susan (just not with eachother!)

Hi Lisa!

It may be helpful for you to connect with Helen Posselt regarding your question about braces/ankle supports. Helen presents on physical therapy every year at PPMD's Annual Connect Conference and is a wonderful resource for the community!

 

http://community.parentprojectmd.org/profile/HelenPosselt
helenposselt@ozemail.com.au

Hi there...my sons avery and matthew both started out with permobile...i gotta say...i hate them! the chairs were always..always...breaking down on us and the wheelbase is just so huge! avery is now in a quantum and though the speed is better, i'm already having problems with that one too. it does have a smaller wheelbase so it fits better in some places and it's ALOT lighter than the permobile. i also love the feature in the back that allows you to shut off his joystick and let you do the driving from behind...really handy when avery, who is now a teenager, decides he's just not going to do anything i say that day...lol. also, the quantum tends to get a little stuck sometimes on the carpet but even with all of that, i still prefer the quantum.

as for day braces, i think its kinda weird the doc said they don't do that for duchenne boys. both of my sons started out with afo's when they were walking up until the point they were inhibiting their balance therefore, stopping them from walking. once avery got into the chair full time he wore day braces until his contractures made them uncomfortable...matthew, my youngest, is now in the chair part time and his contractures keep him from wearing his afo's comfortably so now he wears a brace at night that is extremely lightweight...so in the end its up to you but i found that they really helped out my boys.

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