Despite DMD, I want my son Avery to be able to participate in extra curricular and group activities and don't want to limit him if his body is able. I remember a thread several months ago on the old message board regarding activities that some of the boys were involved in, but I can't seem to find it and would like a fresh perspective.

I recently took him to see his first baseball game and all he talks about is wanting to play baseball now. I know this phase will pass and he'll be on to wanting to take karate lessons by next week, but it really got me thinking about getting him involved in something.

I have considered a martial art or t-ball, but although he is doing quite well now, I worry about something so physical taking a toll on his muscles. I am also considering allowing him to take up a musical instrument but again, I worry about his stamina.

I would love to hear others share their thoughts on the topic. I want my little guy to experience everything in life to the fullest but at the same time I want to protect him and worry that by allowing him to participate it will speed up the progression of the disease.

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I had never thought of a musical instrument, but I bet it would be good to help build strong lungs. I'll keep that in mind for when Kelvin is ready. Sounds good to me, does anyone have a recommendation about muscical instruments from a doctor? Mcihelle
Michelle,
Derek's respiratory therapist says a musical instrument is great for the lungs. He plays the clarinet and his breathing has been very stable, even increasing sometimes from one doctor visit to the next.
Tina


Kelvinsmom - Michelle said:
I had never thought of a musical instrument, but I bet it would be good to help build strong lungs. I'll keep that in mind for when Kelvin is ready. Sounds good to me, does anyone have a recommendation about muscical instruments from a doctor? Mcihelle
Hi-
My son Erik is a junior in HS. In his younger years we went on a lot of walks on trails and at the beach...a slow, but steady pace. He participated in summer camps, swimming, and riding ponies with a group of 7 other kids. From the age of 8 he started working on our farm. He is presently the score keeper for his cousin's softball team, an officer in the Medical Club and attends professional, college and HS sporting events and participates in the chess club. The first PPMD conference I went to recommended swimming, bike riding and martial arts (non contact). I also know parents who have their kids involved in cubscouts (with the right leader), 4-H and power soccer or hockey. What's important to me is the social and fun aspects of extracurriculars, skills, not so much.
Hi! Neel is 2 and our physical therapist also recommended that he do breathing excercises. Because he's so young and doesn't follow directions easily we chose a few different routes. First we bought him a harmonica. THis gets him taking breaths in and out. For variety I purchased a recorder (88 cents at walmart). I also got him some bubbles. However with the bubbles I noticed that the only real exercise he got was breathing out. We all enjoy our family musical time. We have bought harmonicas and recorders for each one of us. Neel loves it!


Kelvinsmom - Michelle said:
I had never thought of a musical instrument, but I bet it would be good to help build strong lungs. I'll keep that in mind for when Kelvin is ready. Sounds good to me, does anyone have a recommendation about muscical instruments from a doctor? Mcihelle
Blowing bubbles under water is good as well. We have Kelvin do it in the pool, and also hold his breath under water. Kelvin loves blowing bubbles as well. Just looking for an opinion here, Kelvin loves (I means loves) to chew gum and wants to do it constantly, what do others think, would this keep his muscles loose or could it overexert them? We do give it to him, sugarless. I might post this under where someone just asked about facial muscles cramping, I wonder if this could help or hurt? Michelle

Kulwant Pannu said:
Hi! Neel is 2 and our physical therapist also recommended that he do breathing excercises. Because he's so young and doesn't follow directions easily we chose a few different routes. First we bought him a harmonica. THis gets him taking breaths in and out. For variety I purchased a recorder (88 cents at walmart). I also got him some bubbles. However with the bubbles I noticed that the only real exercise he got was breathing out. We all enjoy our family musical time. We have bought harmonicas and recorders for each one of us. Neel loves it!


Kelvinsmom - Michelle said:
I had never thought of a musical instrument, but I bet it would be good to help build strong lungs. I'll keep that in mind for when Kelvin is ready. Sounds good to me, does anyone have a recommendation about muscical instruments from a doctor? Mcihelle
I am a Respiratory Therapist and can speak that from experience. A musical instrument is a good choice for general lung issues. I am not entirely sure on the DMD perspective of things as I am new to the community ( my son Ben was diagnosed almost 2 weeks ago). I have asthma and as a kid right up through high school I played the trumpet and saxophone. My peak flows and forced vital capacity are HIGH compared to the predicted norms for my age/height. The funny thing is that when I feel like I'm "tight" and need my inhaler, it hardly shows because on PFTs my lung function is about 20% above predicted and comes down to "normal" when I feel tight (I was a PFT tech for 1.5 years at a children's hospital and would test myself as part of my machine calibrations and standards). I think it would be a great thing to establish super healthy lungs while they are little to give them that advantage for later in life. I will definitely keep this in mind for Ben.

Laurie
My brother is a respiratory therapist as well and would encourage anything that requires your lung to work. Kelvin plays the harmonica a lot, which takes tons of lung strength. He blows and sucks in to play it and we are getting him a better one for Christmas. We hope to find someone some time soon to teach lessons, as he loves it. Michelle

Laurie Botwin said:
I am a Respiratory Therapist and can speak that from experience. A musical instrument is a good choice for general lung issues. I am not entirely sure on the DMD perspective of things as I am new to the community ( my son Ben was diagnosed almost 2 weeks ago). I have asthma and as a kid right up through high school I played the trumpet and saxophone. My peak flows and forced vital capacity are HIGH compared to the predicted norms for my age/height. The funny thing is that when I feel like I'm "tight" and need my inhaler, it hardly shows because on PFTs my lung function is about 20% above predicted and comes down to "normal" when I feel tight (I was a PFT tech for 1.5 years at a children's hospital and would test myself as part of my machine calibrations and standards). I think it would be a great thing to establish super healthy lungs while they are little to give them that advantage for later in life. I will definitely keep this in mind for Ben.

Laurie
Aidan hasn't done it, but lots of people have suggested scouts? My brother has bitter memories of the soap box derby, but it seems like it would be a good activity for boys with DMD...
I let him enjoy any activity he wants to try however, most of the time he doesnt want to participate except for going at the local aquatic centre to play in the pool~it relaxes his muscles. He enjoys going to the park and playing on the play gym and easy sport games such as ball throwing. At home he likes to draw and do crafts which is good for his hands. His favorite activity though is video games but thats okay too.
What I have learned over the years, is most boys know their limitations and will let the instructor know that they have had enough and need to step out and rest.
My son played T-ball, basketball, rode his bicycle without training wheels, swam, drove snowmobiles, drove our friends boat on the lake, he fishes, he kayaks ( he doesn't paddle, we have a 2 person compartment Old Town Kayak ) adapted it with a head rest on it for him, he hunts, he used to go sledding, he walked up hills and stairs, he used a manuel wheelchair way before he got his first motorized chair , he pushed it himself till he could no longer, I allowed him to do what he wanted after all it is his life and it will be a short life he is allowed to live it to the fullest.....I have been blessed to have him 7 years longer than the first propnosis give us back in 1990, that boys live only to their teens. Yes, we worry about them, but please don't allow worrying to stop him from living or even you living....because you will make so many memories thru all you see that they can do......sometimes we all worry about things that will probably never happen.
Adam always knew his limitations and knew when enough was enough, and I believe your sons will know and do the same......Adam knew when it was time to give up and ask for a manuel chair, he knew when it was time to be confined to a motorized chair, he knew it was time for the harrington rod in his back, he knew when he needed the Cough Assist Machine, he knew when to ask our vendor we get his chairs and other supplies from that he needed a strap over the front of him in his chair now.....which we just got a few months ago, they know, they know more than some parents give them credit for, they just know as they grow older and the disease progresses.

Somehow they just know what they can and can't do,
Cheryl
You all are awesome parents!

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