Replies to This Discussion

Permalink Reply by cheryl cliff on June 7, 2008 at 10:24am

Hi Nicole,

I'm with you... about seeing the decline in older boys, my son is the same age as yours. I am very sad to hear someone else having the same concerns and feelings my husband and I share often. It is extremely difficult to watch when they don't fit in with their peers and when their bodies won't keep up with what is "normal". They just want to be like everyone else.

I am so sorry you are going through the same stuff we are
I wouldn't wish this on anyone.
cheryl

Permalink Reply by Kristi Powell on June 8, 2008 at 2:53pm

Hey Cheryl and Nicole, I guess I can join you two..my son is 10 and it has gotten worse this past year too. Getting up off the floor is getting VERY difficult for him. He falls a lot more now and he sticks out his chest like what Nicole was saying. He is also soo much slower this past year that we finanlly broke down and have a loaner wheelchair from the MDA. He doesn't use it for anything other than things that require a lot of walking (zoo ect). I just don't want to order him one yet. I try and focus on what he is still able to do, and just be thankful that he is still with me. He has made more comments this year about not being like the others and even though it breaks my heart I just tell him he is special and God made him the way he is for a reason. Yeah, I'm with you Cheryl, I hate DMD with every ounce of my soul too!!! Thank goodness we have eachother to vent and lean on for support!!
Kristi

Permalink Reply by cheryl cliff on June 10, 2008 at 2:59pm

Over the summer my son is not around his school friends as much and therefore it's the time he can assume a more "normal" or "normal for him/us" position. It sort of brings him into a better mental balance if he is not facing the "sporty guys" everyday. He can be himself more. Summer is the best even tho DMD progression is evident. I really look forward to relaxing with my sons.

Does it work that way for anyone else?

cheryl

Permalink Reply by Linda on June 19, 2008 at 12:22am

Hi Nicole

Although we all know that someday they will all be in wheelchairs, it's still a slap in the face when it they get into that "only for walking long distance" chair. But the upside, if you can call it that, is that at 9 1/2 years he's still walking..well, I'd take that as a good sign. Since he was diagnosed at 3, that gives him the advantage. The fact that you caught it so early and were able to do something about it, that alone gives you a head start. I didn't catch it until Avery was five and he was in a wheelchair by 9. My other son Matthew, he was three as well and I only caught it because of Avery's diagnosis. He's 7 now and is in sooo much better shape than Avery was at that time and I think it was because he's was able start on everything right away. Still, I know how hard it is..especially when you see boys his age doing what boys his age are supposed to be doing and then when he starts to see it as well. My heart goes out to you! I do want to add a small bit of advice..and this is for everyone. I know its hard to do this but thinking ahead will only help you in the long run. If he's starting to have difficulty walking...get those chairs ordered. With my son..it was like one minute he was having trouble walking and the next thing I knew, he was in a chair. It didn't happen overnight of course but by the time I realized we needed a chair, spoke with the doctor, got the refferal to the right people to even recommend the chair, waited for the insurance to approve it, waited for the appointment to get him fitted with his chair, ordered the chair and waited for it come in, then had him fitted a second time to make sure the chair was right for him and a few minor modifications done to it, ...well we were ready to pull our hair out because we needed it! Just a bit of advice. It's better to have it and not need it than to need it and not have it.

Permalink Reply by Holly Bailey on June 20, 2008 at 2:18am

My son is 11 and has been using a power wheelchair full time for about 3 years. I was thinking back a few days ago to what it was like before he used the chair full time. I remember how hard it was for him to get around and walk long distances. I know it is a hard transition to make, but once you do, it is easier also. My son loves the speed he has with his chair and the kids at his school have always accepted it with no problems. Also, being in a power chair makes it easier for him to participate with the kids on the playground - he can keep up with them, he can play catch with them.
I would also agree with the coment above - do not wait until you have to have it - the process of getting a wheelchair can take months and the need for it can happen over night.

Permalink Reply by Tina on June 22, 2008 at 6:27pm

HI Nicki

What about a scooter for Tyler? Maybe this is the wrong image to have in my head or perhaps this image will eventually help ME with the transition process better, but, I think there is less stigmatism to a scooter than a wheelchair. Now granted, as the disease progresses, Duchenne boys need better support for their upper trunk and neck/head area that wheelchairs/powerchairs can provide, but hopefully Tyler won't need this or won't need it for a much longer period of time.
What do you think? Personally, I think my son would feel he looks "cooler" in a scooter vs. a wheelchair.
Thoughts anybody?

Tina

Permalink Reply by Nicole Fry on June 22, 2008 at 6:48pm

Getting a scooter for Tyler has been in the back of my mind for awhile. He would definitely think he was "cool" and would probably be able to manuver it quite well as he has been riding an ATV on his own for 2 years now.

Matt worries that he will become dependent on it too quickly. Tyler can be a little stinker and it is hard to tell sometimes when he really can't do something or if he is manipulating us. I tend to not care either way if he can really do something on his own or not and help him...I figure that life has dealt him a crappy hand and if he wants to be catered to sometimes, who can blame him! On the flip side, I know where Matt is cominig from and I understand the importance of having Tyler be as independent as possible for as long as possible. It's such a tight-rope that we all walk-a constant balancing act.
wo
We are due to see Dr. Leshner again this summer and I plan on asking for his thought on getting a scooter for him. I also need to look into what our insurance will cover when he does need a wheelchair. I don't want to use $$ for a scooter and not be able to get a quality wheenchair when the need arises if there is some stipulation on how many years must pass before a new order can be placed for assistive equiptment.

When are you guys going to King's Dominion again? Tyler decided not to go to MDA Summer Camp this year; he said he "needed a break."

Permalink Reply by Tina on June 23, 2008 at 8:58pm

Hi Nicki

My friend, Patti, from New Jersey bought one thru the MDA. It was resonably priced ( $1500. +/-). Her son is almost 9 years old and he thinks he is cool, too. They like it and it seems to fairly easy to travel with - they had a Ford Explorer and had room for it in the back of the car. I think the MDA provides $3,000 every 3 years ( don't quote me on this- I am the last expert when it comes to this stuff) towards w/c, scooters, afo's, etc.

We see Dr. Leshner on Thursday. We have the longitudinal study in the am and then the MDA clinic afterwards. We call it, " the day with Mark." I want to know if there is anymore updates about the combination trial they talked about back in March.

We plan on going to King's Dominion a few more times this summer. Did you know the Morrison's also bought season passes and were there the same day as us and we didn't even know it? Too funny. Anyway, let me know and maybe we can coordinate our schedules. Usually with me, it's a spontaneous thing...up and out the door we go. I also check the weather 2 days before we go to make sure we'll have good weather. :) I"ll keep you posted. How tall is Tyler?

Mark didn't go to camp, either. He hated being so far away from me for such a long time. He also didn't like their rules. "What do you mean I can't jump in the pool?" "Why do I have to go to bed at 8:30?" "I don't need a nap in the middle of the day, I'm not a baby or an old person!" "Does my counselor have to be a girl?" Ah- you just gotta love him.

Tina

Permalink Reply by Tanya Fleming on June 23, 2008 at 10:14pm

My first son was in a wheelchair when he was 8, second the same and the third was at 9. But my boys never took any steriods, we tried them for a little while on my second son, but his behavior became unbearable. The wheelchair issue is a big one I will not lie, but your are the one that will make it a big plus or minus for your son. We have named each wheelchair, I even put flames on the chairs and car stickers, to make them think of themselves as driving, not being in a wheelchair. We call their chairs their cars or their legs depending on their mood and what they are trying to do. We don't let it stop them though, they go everywhere still. We go for bike rides with them too, we go through tires worse on their chairs then we do on our Van. LOL I even put flame material on their arm rests and laterals. The vendor here loves what I do to their chairs. Just because they are in a chair doesn't mean they don't have to enjoy the chairs. It gives them so much independence you will see. They will amaze you.

Permalink Reply by Julie Gilmore on July 1, 2008 at 10:03pm

Mitchell was in his first wheelchair for long distance at 5 1/2 years of age due to the fact that by the time he was diagnosed he could no longer climb kerbs, ladders or walk more than about 50m before he fell over (yep the doctors dropped the ball with our little boy)..........

Even on steroids he stopped walking just after his 7th birthday, and that week was one of mixed feelings. Emotionally we weren't ready for transition, he was too young, the house had only just been finished, we didn't have a vehicle, the electric wheelchair (for long distances) had only arrived two weeks before (all the therapists and doctors had said he would keep walking until he was 10 or 11) - you name it we felt it, and Mitchell felt it too.

But during that week, some amazing things happened in our house and I completely agree with the other mums when they say the freedom our boys discover when they go into a wheelchair or scooter is amazing.

I can remember crying tears of joy watching Mitch fly up and down the road with his mates, and the thing that sticks out the most is how his hair stood up in the wind...... he had never had the abdominal strength to ride a bike, and had never got past an awkward jog when it came to running, so this was the first time he had ever achieved enough speed to feel the wind in his hair (still brings a lump to my throat now when I think of it).

He became more independent that day, stopped cutting his head open every time he fell, and his attitude to the whole situation improved ten fold, as he could focus his attention on playing now, not trying to keep up or keep his balance.

Speedy was the name of his manual. blue thunder (named by his class) was the first power chair and the red rocket racer (also named by the class) is his current one.

It is a hard time when the boys start transition no-one is denying that, but just remember there will be postive things that you will see during this stage, and there will be times when you shed tears of joy not sadness.

Permalink Reply by Nicole Fry on July 1, 2008 at 10:22pm

Julie,
Thank you for your post. You have such a wonderful way with words! It is so important to embrace the positives...
Warmly,
Nicki

Permalink Reply by Dina on October 1, 2008 at 10:52am

I am seeing these exact signs right now with my son. He is 9 and when he falls he says "He hates himself "and "why is he the only on that falls". It breaks my heart. He knows that he has this disease but I don't think he realizes that he may be in a wheelchair one day. I pray that day will not come.

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