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 Beaus_Dad on
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Thanks for all the responses. It's nice to know there are others observing the same situations, even though its unfortunate. I asked his doctor at childrens and he said it's possible, he related it to someone with arthritis how they have a higher level of discomforate in cold weather. Even though with have the highest respect for the doctors and much more for the scientists trying to find ways to cure these kids, sometimes first hand experience can provide the greatest advice or knowledge when you live with the disease day to day. Our son has developmental and speech delays which relates to his disease and we think a form of autism. We wish he could give us a clear story on what he feels rather than his consitant complaining that his legs hurt. Maybe if some of you that have kids the age of 9-14 with the DMD that don't have the developmental delay's could ask them how the cold weather effects their muscles in the winter or cold rainy times and what remedy's make them feel better. That would be great feedback for us.
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We thought of moving to the phoenix area where people say it's to hot. I agree, but I would trade 9 months of rain stuck indoors for 3 months of staying inside with A/C during the reallly hot summer and to have a pool would be great.
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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Permalink Reply by christine good on
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We live in S. Oregon. It was 82 degrees today and the kids played like it was summer. Best climate in the country.
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Permalink Reply by cheryl cliff on
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Actually Alexander (just 11, no speech, developmental delays) doesn't complain about pain, just of being cold. He wears sweats and gloves when riding his scooter at school during morning recess. He starts wearing outer-wear well before other kids at school. By the end of the day he removes the stuff not needed anymore because the sun is out. Can't imagine how uncomfortable he would be if we didn't live here.
Phoenix is quite beautiful, if you like deserts. Yea it does get hot there but they have basically the same temp as we do here in so.cal-desert, and its easily managed. Especially for those sensitive to cold.
Beaus_Dad said:Thanks for all the responses. It's nice to know there are others observing the same situations, even though its unfortunate. I asked his doctor at childrens and he said it's possible, he related it to someone with arthritis how they have a higher level of discomforate in cold weather. Even though with have the highest respect for the doctors and much more for the scientists trying to find ways to cure these kids, sometimes first hand experience can provide the greatest advice or knowledge when you live with the disease day to day. Our son has developmental and speech delays which relates to his disease and we think a form of autism. We wish he could give us a clear story on what he feels rather than his consitant complaining that his legs hurt. Maybe if some of you that have kids the age of 9-14 with the DMD that don't have the developmental delay's could ask them how the cold weather effects their muscles in the winter or cold rainy times and what remedy's make them feel better. That would be great feedback for us.
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Permalink Reply by Mindy on
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My theory is also vitamin D. When my son wasn't on steroids yet, I gave high doses of vitamin D for awhile, and noticed strength and coordination improvement. Most DMD boys are drastically low on vitamin D even when supplemented. Maybe try boosting his D dose, until you head down south for warmer weather?
We're in seattle, too...
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Permalink Reply by Karen Barnett on
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We have a little space heater that Daniel likes to sit in front of. He ritually turns it on first thing in the morning (even if it's 70 degrees (sometimes even warmer) out and sits in front of it. He's cold a lot and likes the heat on him.
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Permalink Reply by KellyR on
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We returned to Australia in April after spending almost 2 years in the UK. Our son Aidan - who was 6 in August - had a tough time in the cold. He constantly complained that his legs hurt, and spent most of his time indoors. He relied on his Maclaren special needs buggy heavily on days out.
In April we returned to Queensland which has a sub-tropical climate here on the Gold Coast, and is under Helen Posselt's Neuromuscular team, Montrose Access. We have been back here six months this month. He is a different child, has a lot more energy than he had in England, can walk further than he could in England, and has not once complained of his legs aching. He was getting some blood in his urine, sometimes just from school - just enough to discolour it slightly - , to the point that he checked it everyday at school. This hasn't happened once here. His description, when tired, was that "his brain wasn't turning his muscles on", and he complained that his legs "hurt".
At his appointment with Montrose Access two months ago we discussed this, and the conclusion that was drawn was thus; that in England, his body expending more energy to keep him warm, combined with the extra layers of clothes he was 'carrying' everyday, contributed to his flagging energy levels and flexability. It's not scientific evidence, of course, but the warmer climate is the only thing we can put it down to as nothing else has changed, apart from his flexability, which has increased to a degree, along with the timed runs that his physio gets him to do, he is faster here.
Again, not scientific, but the change was quite obvious to us. He hasn't 'continued' to improve over six months - he is not getting more, and more energetic, it is like he arrived in Queensland, went up a gear and has maintained that type of energy level since. He still is far weaker/slower than his peers, but seemingly stronger than when he was in England.
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Permalink Reply by Samantha Dearing on
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Justin is 13.5yrs old, no speech or developmental delays. He hates the cold! We live in East Texas and generally have mild winters. Its 58 here right now and thats unusally cold for this time of year. Justin says the cold causes his legs and arms to feel like they are cramping up. We use extra blankets, heating pads, and he starts wearing winter clothes earlier. One of our doctors told us one time that your muscles help you to regulate your body temperature and when their muscles are really broken down, their bodies cant handle temperature changes as well. We have found this to be true with Justin. He overheats quickly and he gets extremely cold quickly. Two summers ago, we had been swimming, and it was almost 100 outside. We brought Justin back inside and the house was relatively cool compared to outside. His body temperature dropped to 94 degrees. His body couldnt adjust to the change in temps. We have to be aware of temp changes and adjust accordingly now!
--Samantha
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Permalink Reply by Susana Arroyo on
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During the winter I need to use my scooter to get around because the cold cramps up my legs.
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Its been a while since I have been on here, I have been following PPMD on facebook, but here's one for you related to this discussion I started. Sometimes gut instinct works out for the good. We made the decision to try to give our son the best life he could have and decided to move out of Seattle (bothell). We moved to Allen,TX in November which is 30 mi. North of Dallas...Kind of like Mill Creek Area. Anyways, we now have a 4200 sq ft house with a flat driveway, one smal tiny step in to the house from the garage or level from the front door, all rooms on the ground floor with an upstairs which is a big media pool table room. Ramblers are so hard to find in the Seattle area and all the houses seem to have the rooms upstairs, this has worked out GREAT! So..Even better the warmer weather has made a tremendous impact on his muscles. He hardly ever complains about mucles cramps anymore, his legs stretches are so much easier because his legs are not so tight and cramped up and his flexibility puts a little spunk in to his step. We have an ingroung hot tub and pool that has worked well for him to relax and we are just starting to get in to the pool season. So far he has gone twice in the pool and its nice for him to get some good excercise.
Obviously this isnt medical advise or anything like that, but I thought I would share on the positive outcome so far.
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Glad to hear you made the decision and things are working out better. Hope Texas treats you well !! There are some great Texas DMD families there too!
Beaus_Dad said:Its been a while since I have been on here, I have been following PPMD on facebook, but here's one for you related to this discussion I started. Sometimes gut instinct works out for the good. We made the decision to try to give our son the best life he could have and decided to move out of Seattle (bothell). We moved to Allen,TX in November which is 30 mi. North of Dallas...Kind of like Mill Creek Area. Anyways, we now have a 4200 sq ft house with a flat driveway, one smal tiny step in to the house from the garage or level from the front door, all rooms on the ground floor with an upstairs which is a big media pool table room. Ramblers are so hard to find in the Seattle area and all the houses seem to have the rooms upstairs, this has worked out GREAT! So..Even better the warmer weather has made a tremendous impact on his muscles. He hardly ever complains about mucles cramps anymore, his legs stretches are so much easier because his legs are not so tight and cramped up and his flexibility puts a little spunk in to his step. We have an ingroung hot tub and pool that has worked well for him to relax and we are just starting to get in to the pool season. So far he has gone twice in the pool and its nice for him to get some good excercise.
Obviously this isnt medical advise or anything like that, but I thought I would share on the positive outcome so far.
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