Weather? Anyone know of Scientific research proving warmer climates help DMD function easier?
Our son is 9 yrs old and is demonstrating the weakness in his muscles especially in his legs. We live in the Seattle area and we have noticed that when the summer time is around our son walks and functions extremely better. Since it rains pretty much 9 months out of the year we have thought about moving to another area in the country, not only to get away from the rain which is also problem for when he has to go to recess at school or sit in his wheelchair on the bus lift but the damp coldness that seems to make him very stiff and slow moving. Streching him every night sometimes has the need of a warm bath just to loosen him up.
Does anyone know of any studies linking cold damp weather to the difficulties we are seeing? We would greatly appreciate any links or suggestions. We need scientific evidence reports rather than personal observations like ours. thank you
Does anyone know of any studies linking cold damp weather to the difficulties we are seeing? We would greatly appreciate any links or suggestions. We need scientific evidence reports rather than personal observations like ours. thank you
Replies to This Discussion
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Permalink Reply by Wyatt's Mommy, Melissa on
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I live in the Seattle area too (Lake Stevens to be exact), and I'm sorry that I can't be more help. Our son is only 19 months old and I don't notice a difference. However, Wyatt can't tell me how he's feeling either. I would be interested to see if other parents in our area of noticed the same things. Good Luck and Take care. Cute picture of your son. I love the shades.
:) Melissa
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Permalink Reply by Jeni Ward on
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I know this won't help you, but I was wondering about that, too. My son was just diagnosed, and is only 4, but I noticed improvement during the summer, too. Sorry I can't help with any scientific evidence right now, but I will certainly try to find some!
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Permalink Reply by Karen on
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Hi
I'm north of Seattle and I have been following dmd research for 13 years. I have not heard of specific weather issues and the disease. The boys are more susceptable to cold and therefore discomfort. I don't think this speeds up the disease process. It is just uncomfortable. As the boys age and lose function I would think it would be equally uncomfortable to be in a very hot, humid climate without air conditioning. I will be interested what gets posted here.
Regards,
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Permalink Reply by cheryl cliff on
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Haven't heard of any studies about weather and DMD, we live in southern California desert where it can get VERY (113 in shade) hot but not normally with humidity, ours is a "dry heat". Our son is 11, my husband and I have discussed how difficult it must be to live in areas with more severe weather concerns. I can't imagine living in the snow, wind or rain and trying to function with a scooter and such. In summer we wear hats and sunglasses, swim (good for dmd) everyday from spring on, have a canopy cover for the scooter, use umbrellas for shade. We don't use sunscreen much on our son so he can get a dose of vitamin D. On extremely hot days we stay indoors with air conditioner on and play wii or watch movies. Almost all houses in our area have air conditioning, cars too. It comes as a standard item.
I think dmd is easier to manage while living here. Ice, snow and rain would make things really tough.
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Permalink Reply by Ofelia Marin on
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One more thing I can think of is that the extra layers of clothing required during winter put more pressure on the muscles and make walking even more difficult after a certain age.
cheryl cliff said:Haven't heard of any studies about weather and DMD, we live in southern California desert where it can get VERY (113 in shade) hot but not normally with humidity, ours is a "dry heat". Our son is 11, my husband and I have discussed how difficult it must be to live in areas with more severe weather concerns. I can't imagine living in the snow, wind or rain and trying to function with a scooter and such. In summer we wear hats and sunglasses, swim (good for dmd) everyday from spring on, have a canopy cover for the scooter, use umbrellas for shade. We don't use sunscreen much on our son so he can get a dose of vitamin D. On extremely hot days we stay indoors with air conditioner on and play wii or watch movies. Almost all houses in our area have air conditioning, cars too. It comes as a standard item.
I think dmd is easier to manage while living here. Ice, snow and rain would make things really tough.
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Good point Ofelia. Although clothing doesn't appear to the normal person to "weigh" much I have heard of older dmd guys who won't wear rings on their fingers because of additional weight.
Gawd I HATE THIS DISEASE !!
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Permalink Reply by Pilar Rizzo on
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Sorry, not help you with specific evidence, but we live in NJ and we have of course winter, but i read that when is to cold is not good, or to hot.!. doesn't matter... when they walk long distances or swimming etc.. iguess like any other parent we trying to help them the best we can.... i personally give him, endurance protein (powder), stem cell royals, flex oil,
creatine monohydrate, etc.. and prednisone 20mg every other day... he tells me he feels tired more often without doing anything...i guess we can do just so much for our kids. hope , and faith!.
Pilar.
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Permalink Reply by Karen Barnett on
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My son is much slower in the winter. He suffers from a lot of cramping in his muscles (especially his legs) in the winter. He experiences none of this in the summer. I really believe the cold causes the cramping.
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Permalink Reply by Darcy Tumminello on
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I agree with Karen. We were watching a 10-15 minute Christmas parade last year and it was a little cold but not to bad...My
son could hardly get up and when he did, his legs were soooo stiff and he's never like that. It scared me. I had no idea what was going on. After a few hours, I realized it was the cold weather.
Darcy
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Permalink Reply by Michelle Gonzales on
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We live in the Chicago area and had a terrible, terrible winter last year. I grew up in the snow and can deal with it. However, boots are heavy. Nicolas turned 7 in June, was 6 at time of winter, and we have to try to find the lightest boots and coats as possible that are still warm. My main concern is when he is not able to walk, and will be using a scooter, how he can get around in the snow. We have very few sidewalks in our area and to just get to the car this past winter was difficult (no garage for cars). But Nicolas is a kid and loved to play in the snow!! My husband and I were talking about moving to Texas (his family's hometown), but that's too hot for me.
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Well, all you frozen winter families are certainly welcome to move to southern california...we'd love to have you here!!
xox
cheryl
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Permalink Reply by Paul Cliff on
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We raised this issue with an OT at the local MDA clinic last year. Even hear in SoCal, Alex gets chilled. Based on his experience he said that DMD patients have a lower activity level, leading to lower blood circulation under the skin and vulnerability to getting chilled. On the scooter, he suggested using a battery powered electric blanket for extended outings.
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