I am still so thankful that Jared is still so ambulatory. We are truly blessed by this fact and so I really cannot complain. I have been so torn about what we were recently told in Cincinnati and need some real advice from you parents that have already been through this. When Jared was first diagnosed, the Dr's at UCLA told us that Jared should walk and run as much as possible and do whatever he wants. Of course, I have noticed more leg pain and more tiredness, but we just try to get him to listen to his body, something of which he still needs to learn to conserve his energy. They felt that keeping him doing while he still can was the best thing. When we went to see Dr. Wong, the PT told us that Jared should never run in PE, except maybe one lap if he had too, and to do as little walking and running to conserve his energy and his muscles, since they will not rebuild and that we should consider a scooter for getting around and keeping up with his friends. So, we have two extreme opinions and it makes it hard, because how do you tell a child he can't run. Again, listen to me, as I feel bad for even bringing this up because we are greatful that he still is ambulatory. But, honestly, I don't know what is best for him now. Should we let him walk and run without a care in the world and then let the bomb drop when he can't anymore? How do we know since maybe he has some dystrophin in there to help since he has BMD? The other hard part of all this is people honestly don't believe us since he looks like a normal kid. They don't see when he is in pain and needs his legs rubbed. They don't see when we need to put him in a wheelchair because his legs have given out-thankfully that is rare. Thank you for listening and any suggestions would be appreciated.

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I hope that days like today will teach Jared to listen to his body so that he stops pushing himself past the limit. It sounds like it might have been a bit of a breakthrough for him. I think teaching him to take frequent rests will help him listen to his body more too. I have really been trying to work with Avery on the importance of resting to "keep his muscles strong" because I know that once he starts Kindergarten in the fall and is going to school 5 days a week, I won't be able to protect him. While I am very careful about not allowing too much physical activity, I do allow him to ride his bicycle and kick the ball around, etc. and do what he enjoys doing while he still can. We even tried out a karate class at his preschool during the fall, but that was just too physically demanding and he couldn't keep up with the other boys so he stopped going.

I think waiting on the scooter is probably the right choice for you now too. I could see him using it for long distances but he seems so mobile now that using it in school probably isn't necessary yet. Is he usually able to keep up with his friends? I genuinely believe that Jared will be walking just fine for a very, very long time. As I said before, it sounds like the p/t in Cincinnati was just trying to be as proactive as possible.

As far as gaining muscle mass, I could be wrong, but I don't believe that it's possible in Duchenne or Becker patients. It can be maintained longer with the use of steroids.
The point I think we want to establish here is whether limiting non-fatiguing, non-muscle building activitity has any impact on extending mobility.

We have a couple of people that have responded here that they've been told by physicians and PT's that you can "save" your muscles by not using them and have mobility later into life. Others have been told the opposition and encouraged to exercise to extend mobility.

I'd like to hear more people's experience with this, please add your experience.
I think self regulation is really key and limiting concentric exercise such as stair climing which does break down the muscle faster. Swimming and bike riding is good. Execise is important for bone density,which tends to be low for these guys, and also for mataining a good weight. Dr.Wong has told us to not have them over due it and make sure they have plently of breaks and rest times and to avoid concentric exercise. We still need to let them be kids for as long as they can be.
Dr. Wong/the PT's in Cinc. never told us to completely eliminate all physical activity, just avoid certain things. Stair climbing and hill climbing which are concentric exercises should be avoided or as limited as possilble. Resistance and weight bearing exercises should not be done. Doing things that are dangerous and could lead to fractures should be avoided - like trampolines. Their bones are more fragile, especially being on steroids. I have not just heard this from Cinc. but from therapists at the PPMD conferences. A lot of PT's do these kinds of exercises with our son's during a PT session (that has been our experience anyway) and they need to understand that these are more damaging and that stretching is what is beneficial - maintaining what they have and avoiding contractures. You can't build the muscles. They are in a downward spiral losing muscle. I am of the opinion that doing too much (especially the wrong things) speeds up that process. They key is preserving what they have as long as you/they can. As far as getting a scooter, my son has one and we use it as a tool for conserving energy and helping avoid speeding up that muscle loss from overdoing it. Same applies to using the handicap placard. He would be completely worn out if he had to do all the walking he sometimes has to do to get to some places (Wal-Marts comes to mind). He welcomes the use of his scooter for anything that requires a lot of walking. Does he use it everyday? No - hasn't used it since Nov. when we went to Cinc. Nothing in his daily life requires him to walk more than he can handle right now or to the point of fatigue. I don't need to restrict my son's daily activities too much - he pretty much self regulates on his own and it's winter right now. He hates the cold. We live on hilly land so in the summer my son uses his quad. I absolutely try and minimize his walking/running around up and down the hills and again he welcomes it's use. I think you have to really keep a balance and let them be kids and play and have fun but you know if your son takes a sudden interest in weight lifting or something than time to redirect to a different activity. I do what I can to avoid the concentric exercises without making a big deal about it to my son.
Karen
Our pt basically told us that Justin should use his muscles, but not to the point of major fatigue or exhaustion and that NOT using them could do just as much harm as overusing them. She said its a balancing act. Use them or lose them, overuse them lose them. We just always went with what Justin felt like doing and wanted to do.

--Samantha
Here's a good article on the subject of DMD and exercise from the National Center on Physical Activity and Disability at the University of Illinois - Chicago.

LINK

We've been told the opposite of Eileen and Karen by our doctors - that eccentric exercise is the most damaging, and that's what this article says as well. I do totally agree that stair climbing causes the most fatigue, but perhaps causing fatigue and muscle damage are not necessarily always associated.

There's a bunch of good bibiographic references included at the bottom. I'd really like to read the one from Hayes, which details a study in which MDX mice showed increased resistance to fatigue when they exercised.

Anybody have easy access to this reference? It requires a subscription to get it online.

Hayes, A., Williams, D.A. (1996). Beneficial effects of voluntary wheel running on the properties of dystrophic mouse muscle. Journal of Applied Physiology, 80, 670-679.
Keith,
I always get the two confused. Your right it is the eccentric that is bad - going down the stairs is the worst and is eccentric. Up is concentric and is not considered as bad.

From Wikipedia...

A concentric contraction is a type of muscle contraction in which the muscles shorten while generating force.

During a concentric contraction, a muscle is stimulated to contract according to the sliding filament mechanism. This occurs throughout the length of the muscle, generating force at the musculo-tendinous junction, causing the muscle to shorten and changing the angle of the joint. In relation to the elbow, a concentric contraction of the biceps would cause the arm to bend at the elbow and hand to move from near to the leg, to close to the shoulder (a biceps curl). A concentric contraction of the triceps would change the angle of the joint in the opposite direction, straightening the arm and moving the hand towards the leg.


[edit] Eccentric contraction
During an eccentric contraction, the muscle elongates while under tension due to an opposing force being greater than the force generated by the muscle.[1] Rather than working to pull a joint in the direction of the muscle contraction, the muscle acts to decelerate the joint at the end of a movement or otherwise control the repositioning of a load. This can occur involuntarily (when attempting to move a weight too heavy for the muscle to lift) or voluntarily (when the muscle is 'smoothing out' a movement). Over the short-term, strength training involving both eccentric and concentric contractions appear to increase muscular strength more than training with concentric contractions alone.[2]

During an eccentric contraction of the biceps muscle, the elbow starts the movement while bent and then straightens as the hand moves away from the shoulder. During an eccentric contraction of the triceps muscle, the elbow starts the movement straight and then bends as the hand moves towards the shoulder. Desmin, titin, and other z-line proteins are involved in eccentric contractions, but their mechanism is poorly understood in comparison to cross-bridge cycling in concentric contractions.[1]

Muscles undergoing heavy eccentric loading suffer greater damage when overloaded (such as during muscle building or strength training exercise) as compared to concentric loading. When eccentric contractions are used in weight training they are normally called "negatives". During a concentric contraction muscle fibers slide across each other pulling the Z-lines together. During an eccentric contraction, the filaments slide past each other the opposite way, though the actual movement of the myosin heads during an eccentric contraction is not known. Exercise featuring a heavy eccentric load can actually support a greater weight (muscles are approximately 10% stronger during eccentric contractions than during concentric contractions) and also results in greater muscular damage and delayed onset muscle soreness one to two days after training. Exercise that incorporates both eccentric and concentric muscular contractions (i.e. involving a strong contraction and a controlled lowering of the weight) can produce greater gains in strength than concentric contractions alone.[3][4] While unaccustomed heavy eccentric contractions can easily lead to overtraining, moderate training may confer protection against injury.[4]
I've always thought it odd, though, that going down is more damaging than up, given that it's easier for the kids to go downstairs than upstairs.
Hello Everyone, I find it is often difficult to navigate in the world of Duchenne. Many conflicting statements of what to do and when, what supplements to take, what doctor to see. THe Care Considerations document is in the final stages and hopefully we will see it in print in the next few months.
I hope you don't mind if I comment on the exercise issues. In general, we see boys with Duchenne do a certain amount of self-regulating. Many are cautious while others find that cramping or 'tired muscles' limit their activity. PT's with experience in DMD suggest that we let the boys do what they can and what they want BUT (and here's the big thing) but not encourage them to overuse or exhaust their muscle Eccentric exercise is not recommended at all. They should not be encouraged to steps, lift weights, participate in sports such as skiing and running should be limited. The PT who recommended conserving strenth, muscle and function is exactly right. Scooters are recommended for long distances. Muscles are compromised -the goal should be to preserve and protect function.
Warm regards,
Pat
Sorry I get them mixed up as well. Thanks for the correction.
When it comes to gym class and playing outdoors, Joshua has learned to try each activity once, but again to "listen to his body". He is allowed to sit out in gym if he is tired and he always has a friend to play with outside when he is tired. He has his frustrating days too, but the older grades have kids whom dedicate their time to the younger children with disabilities and get extra credits for doing so. Joshua has one of those kids with him now. They help him climb the hill to roll down the snow; climb the play structure; push him on the swings; and climb up the slide. He is only in kindergarten, but when they have quiet time and the teacher is reading to the kids and singing songs, the PT comes into the room and does their routine so he can still listen and sing, but is not in that uncomfortable sitting position on the floor. He gets this done twice daily. Our school only goes to grade 8 and there are just over 200 kids in it. Our principal though, had a cousin die of Duchenne some time ago and understands the disease and it's necessities. Having open dialogue, communication, and respect with all those involved with our lives concerning the disease has helped a lot. If you cannot find answers from those who treat our boys, ask more questions or look somewhere else. When it comes to physiotherapists, ours had no idea about Duchenne. We spoke to her before she started, and she did her research before she touched him. We really respected her for that and that is why she is still treating Josh. Joshua is coming 6 and she has been with him since he was 2.

Naomi

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