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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Kari - I'm interested in what you were told at Cincinnati "the PT told us that Jared should never run in PE" and "do as little walking and running to conserve his energy and his muscles"

We were to Cincinnati for the first time in November, and I definitely did not come away with that impression from them - nor the other two MD clinics we've been to. Everything we've been told is that exercise is good - not detrimental - as long as it's not to the point of fatigue.

I have not heard or read of the concept of having a limited number of steps before losing mobility, or that limiting the amount of muscle use would extend mobility. That doesn't jive with the explanation I've been given on the physiology of how muscle function is lost. If anyone has seen anything written on that concept, I'd very much like to see it.

I've definitely been told that exercising to the point of causing muscle damage is bad. Muscle fatigue = muscle pain = muscle damage. The muscle can't be rebuilt. Does normal physical activity cause damage? Does every flex of a muscle cause a tear? I don't believe that's the case - perhaps someone with some knowledge in this area can weigh in.

If mobility could be extended by using the muscles as little as possible, I would think we'd be bombarded with this information. The preliminary TREAT-MD standard care recommendations say nothing about limiting muscle use. They actually recommend "moderate levels of active exercise, particularly in a hydrotherapy pool".

If I were you, I'd ask for a clarification from Dr. Wong on the recommendation as far as exercise. Please post or drop me a PM with what you find out. I'd be very interested to hear what they say.

We're not limiting any activity, as long as it doesn't cause any fatigue or discomfort.
Keith, I am glad you had a very different impression. I see a lot more wisdom coming from the parents then I do the specialists sometime. The PT said that he could run a lap at most if he wanted to and she even recommended a mobility scooter. Let's hope someone who is an expert can respond so that we can get the balance we need for our boys and the proper direction as I am still trying to find my way.

Kari

Keith said:
Kari - I'm interested in what you were told at Cincinnati "the PT told us that Jared should never run in PE" and "do as little walking and running to conserve his energy and his muscles"

We were to Cincinnati for the first time in November, and I definitely did not come away with that impression from them - nor the other two MD clinics we've been to. Everything we've been told is that exercise is good - not detrimental - as long as it's not to the point of fatigue.

I have not heard or read of the concept of having a limited number of steps before losing mobility, or that limiting the amount of muscle use would extend mobility. That doesn't jive with the explanation I've been given on the physiology of how muscle function is lost. If anyone has seen anything written on that concept, I'd very much like to see it.

I've definitely been told that exercising to the point of causing muscle damage is bad. Muscle fatigue = muscle pain = muscle damage. The muscle can't be rebuilt. Does normal physical activity cause damage? Does every flex of a muscle cause a tear? I don't believe that's the case - perhaps someone with some knowledge in this area can weigh in.

If mobility could be extended by using the muscles as little as possible, I would think we'd be bombarded with this information. The preliminary TREAT-MD standard care recommendations say nothing about limiting muscle use. They actually recommend "moderate levels of active exercise, particularly in a hydrotherapy pool".

If I were you, I'd ask for a clarification from Dr. Wong on the recommendation as far as exercise. Please post or drop me a PM with what you find out. I'd be very interested to hear what they say.

We're not limiting any activity, as long as it doesn't cause any fatigue or discomfort.
That sounds very extreme to me. There are documented cases of Becker patients who played competitive sports and never lost ambulation (see papers by Comi 94, Heald 94 etc.). Those are clearly documented cases where playing sports was not detrimental to ambulation.

Unless your son needs a scooter I do not understand why one was suggested either. Have you ever had a muscle biopsy to know where on the Becker spectrum your son is?


Kari said:
Keith, I am glad you had a very different impression. I see a lot more wisdom coming from the parents then I do the specialists sometime. The PT said that he could run a lap at most if he wanted to and she even recommended a mobility scooter. Let's hope someone who is an expert can respond so that we can get the balance we need for our boys and the proper direction as I am still trying to find my way.

Kari

Keith said:
Kari - I'm interested in what you were told at Cincinnati "the PT told us that Jared should never run in PE" and "do as little walking and running to conserve his energy and his muscles"

We were to Cincinnati for the first time in November, and I definitely did not come away with that impression from them - nor the other two MD clinics we've been to. Everything we've been told is that exercise is good - not detrimental - as long as it's not to the point of fatigue.

I have not heard or read of the concept of having a limited number of steps before losing mobility, or that limiting the amount of muscle use would extend mobility. That doesn't jive with the explanation I've been given on the physiology of how muscle function is lost. If anyone has seen anything written on that concept, I'd very much like to see it.

I've definitely been told that exercising to the point of causing muscle damage is bad. Muscle fatigue = muscle pain = muscle damage. The muscle can't be rebuilt. Does normal physical activity cause damage? Does every flex of a muscle cause a tear? I don't believe that's the case - perhaps someone with some knowledge in this area can weigh in.

If mobility could be extended by using the muscles as little as possible, I would think we'd be bombarded with this information. The preliminary TREAT-MD standard care recommendations say nothing about limiting muscle use. They actually recommend "moderate levels of active exercise, particularly in a hydrotherapy pool".

If I were you, I'd ask for a clarification from Dr. Wong on the recommendation as far as exercise. Please post or drop me a PM with what you find out. I'd be very interested to hear what they say.

We're not limiting any activity, as long as it doesn't cause any fatigue or discomfort.
Kari,

I'd definitely seek some clarification about this. The PT gave you the advice we were given about Alexander, and he may not have understood that Jared had been classified as a Becker's instead of a Duchenne case. Becker's does come in wider variety of outcomes than Duchenne. I was told by one of the doctors at Loma Linda's MDA clinic, admittedly not the leading lights of the field, but much better informed than some of the horrow shows that are out there, that the official definition of Becker's was a loss of the ability to walk somewhere between the age of 16 and never. In Alexander's case, eliminating PE and active recess dramatically reduced the instances of falling and largely eliminated those days where he couldn't function very well in school because of his fatigue. On the other hand, elminating these activities further isolated him socially until Dave Erickson, the AWESOME OT from Loma Linda came to his school and gave a speech to the teachers older kids about the nature of Alexander's disability, why he had the limitations he has and what was reasonable to expect from him.
Paul,

Can you elaborate on the advice you were given as far as exercise? Your understanding is that limiting exercise as much as possible, even if the boy is not fatigued, would "conserve muscle" and extend mobility? Did that come from Loma Linda?

The confusion on this issue highlights the need for a standard of care. How can some people be getting advice 180 degrees from what other people are being told on such a huge part of our daily lives?
Ofelia,

They won't do a biopsy since Dr. Wong said that the risk from being put under is too great. She did an MRI to see Fatty tissue and that does not reveal enough.

Kari

Ofelia Marin said:
That sounds very extreme to me. There are documented cases of Becker patients who played competitive sports and never lost ambulation (see papers by Comi 94, Heald 94 etc.). Those are clearly documented cases where playing sports was not detrimental to ambulation.

Unless your son needs a scooter I do not understand why one was suggested either. Have you ever had a muscle biopsy to know where on the Becker spectrum your son is?


Kari said:
Keith, I am glad you had a very different impression. I see a lot more wisdom coming from the parents then I do the specialists sometime. The PT said that he could run a lap at most if he wanted to and she even recommended a mobility scooter. Let's hope someone who is an expert can respond so that we can get the balance we need for our boys and the proper direction as I am still trying to find my way.

Kari

Keith said:
Kari - I'm interested in what you were told at Cincinnati "the PT told us that Jared should never run in PE" and "do as little walking and running to conserve his energy and his muscles"

We were to Cincinnati for the first time in November, and I definitely did not come away with that impression from them - nor the other two MD clinics we've been to. Everything we've been told is that exercise is good - not detrimental - as long as it's not to the point of fatigue.

I have not heard or read of the concept of having a limited number of steps before losing mobility, or that limiting the amount of muscle use would extend mobility. That doesn't jive with the explanation I've been given on the physiology of how muscle function is lost. If anyone has seen anything written on that concept, I'd very much like to see it.

I've definitely been told that exercising to the point of causing muscle damage is bad. Muscle fatigue = muscle pain = muscle damage. The muscle can't be rebuilt. Does normal physical activity cause damage? Does every flex of a muscle cause a tear? I don't believe that's the case - perhaps someone with some knowledge in this area can weigh in.

If mobility could be extended by using the muscles as little as possible, I would think we'd be bombarded with this information. The preliminary TREAT-MD standard care recommendations say nothing about limiting muscle use. They actually recommend "moderate levels of active exercise, particularly in a hydrotherapy pool".

If I were you, I'd ask for a clarification from Dr. Wong on the recommendation as far as exercise. Please post or drop me a PM with what you find out. I'd be very interested to hear what they say.

We're not limiting any activity, as long as it doesn't cause any fatigue or discomfort.
Hi Paul,

The PT definitely knew Jared was Beckers and checked him thoroughly for what he could do. This topic seems to be important since we all all not given the same standard of care. I am glad we are discussing this.

Kari

Paul Cliff said:
Kari,

I'd definitely seek some clarification about this. The PT gave you the advice we were given about Alexander, and he may not have understood that Jared had been classified as a Becker's instead of a Duchenne case. Becker's does come in wider variety of outcomes than Duchenne. I was told by one of the doctors at Loma Linda's MDA clinic, admittedly not the leading lights of the field, but much better informed than some of the horrow shows that are out there, that the official definition of Becker's was a loss of the ability to walk somewhere between the age of 16 and never. In Alexander's case, eliminating PE and active recess dramatically reduced the instances of falling and largely eliminated those days where he couldn't function very well in school because of his fatigue. On the other hand, elminating these activities further isolated him socially until Dave Erickson, the AWESOME OT from Loma Linda came to his school and gave a speech to the teachers older kids about the nature of Alexander's disability, why he had the limitations he has and what was reasonable to expect from him.
Hi Kari,

I've been meaning to respond to this but got side tracked with the holidays. From my observation of meeting Jared, he appears to be a boy that is just bursting with energy so I'm guessing that trying to slow him down would be a challenge that he probably wouldn't want to comply with. I would tend to believe that the p/t in Cincinnati was just trying to be as proactive as possible about conserving Jared's energy.

Ultimately, you need to decide what is right for Jared while looking at it from all angles.I try to make Avery take rest periods on a daily basis and limit climbing up or down stairs, but at the same time, since he's been on Deflazacort, his energy and physical strength has increased so much that I know there are times that I just need to let him be a boy and run, jump and play without limiting him. I think it's all about finding a balance. Hopefully Jared will listen to his body and learn to pace himself. I am surprised that the p/t suggested a scooter considering how ambulatory he is. Was the suggestion to use it for long distances such as trips to Disneyland, etc. where excessing walking could create too much fatigue on the muscle or to use on a daily basis at school, etc?
We have been consistently told to avoid activities which are intended to build Alex' strength, and to avoid things which cause him obvious fatigue. This means that we have him avoid things that we've learned by experience are going to make him listless or prone to falling that day or the next. In our case at this stage of his illness, that means any walking more than a hundred yards or so at time. I've heard the limited steps thing, but never from a medical professional; it makes intuitive sense from the standpoint that the more these boys walk and run, the more likely they are going to stress their muscle cells and trigger the disease pathology and incrementally lose mobility, but I suspect that no one has systematically ever looked at any correlation between lifestyle and the length of time before these kids go off their feet.
Has anyone heard of this guy?

He is an athlete with FSHD.

http://www.ryanlevinson.com/Ryan_Levinson/%28Home%29.html
Hi Lee Ann,

You know Jared - he is full of energy and spit and vinegar - hard to keep him down except when he overdoes things. Anyway, from what I have been gaining from all of the comments is balance is important. Jared has not been mature enough to figure out when to stop the activity so he overdoes and then suffers. But, the neat thing that happened today, is I think he is finally figuring it out slowly but surely. He told me he played a game at recess and had to stop playing since it was too much running and hurt his legs. I was surprised to hear that from him but I hope this will be just the beginning he needs to build on to learn when to stop and say no and see what else he can do to replace that activity. We are getting there. As far as the mobility scooter, she suggested it to just keep up with friends and to get around to/from school etc. But I am thinking it best to wait. I guess the new thing that comes to mind. Do you lose more muscle from sitting all the time or more from overdoing? With some exercise, will he gain muscle as long as it is not too strenous?

Kari
Lee Ann Faeth said:
Hi Kari,

I've been meaning to respond to this but got side tracked with the holidays. From my observation of meeting Jared, he appears to be a boy that is just bursting with energy so I'm guessing that trying to slow him down would be a challenge that he probably wouldn't want to comply with. I would tend to believe that the p/t in Cincinnati was just trying to be as proactive as possible about conserving Jared's energy.

Ultimately, you need to decide what is right for Jared while looking at it from all angles.I try to make Avery take rest periods on a daily basis and limit climbing up or down stairs, but at the same time, since he's been on Deflazacort, his energy and physical strength has increased so much that I know there are times that I just need to let him be a boy and run, jump and play without limiting him. I think it's all about finding a balance. Hopefully Jared will listen to his body and learn to pace himself. I am surprised that the p/t suggested a scooter considering how ambulatory he is. Was the suggestion to use it for long distances such as trips to Disneyland, etc. where excessing walking could create too much fatigue on the muscle or to use on a daily basis at school, etc?
I have not, but am glad you introduced him since he is an inspiration to us all.

christine good said:
Has anyone heard of this guy?

He is an athlete with FSHD.

http://www.ryanlevinson.com/Ryan_Levinson/%28Home%29.html

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