Friday, November 30, 2012

There's a Chill in the Air!

Yep, we can feel it, it's starting to get colder!  And for those of us living in colder climates we know how bitter the winters can be.  Don't worry, Rett Girl is here to give you some ideas in keeping your girls nice and toasty even through the winter months.  

Lets start with the most logical place, our Rett Girls' ice cold feet.  Because many girls with Rett Syndrome have poor circulation their feet and even their legs can get very cold and even look blue or purple so it's very important that we do everything we can to keep them warm and comfortable.  While you are in the house check out these great Padraig Slippers!  They're made of wool and have leather on the bottom so they have a bit of a grip on floors.  Or, what about these cute Stompeez that are not only warm but may also be motivating.

When you're venturing out of the house it's even more important to keep those feet warm and toasty.  The EMU Australian Boot is one of the warmest boots on the market, and they are tall so they keep legs warm too.  They are made of suede and sheepskin so they are super comfy.  Or, how about these fuzzy fleece boots that can fit over AFO's.

If you are heading out for a quick trip and getting into a heated car this poncho may be a good option.  It has a hood so it will keep your Rett Girl warm but certainly not warm enough to be outside for any period of time.  Here is another link to ponchos made for girls in wheelchairs. It's especially nice for our girls that use elbow immobilizers.  For a little more time out in the cold try this ZeroXposur Skye Snowboard Jacket. This jacket is awesome, super warm and even has an elastic band where fingers go through to keep gloves and mittens on!

It can be really hard to get a glove or mitten on our girls' hands -- and really hard to keep it there! Try these mittens from Adaptations by Adrian! They have a style that is waterproof for our girls who like to chew on their gloves!

Remember when your girl was an infant and those wonderful buntings kept her warm in her infant carrier?  Guess what, they make them for big kids too!!  Super warm and snugly these great buntings have slits in the back that buckles and seat belts can go through and fit perfectly in oversized strollers or wheelchairs.

Don't forget the heated blanket!  We have 2 of these at our home and one at Grammy's house.  Heated blankets are perfect for warming up sheets and blankets so your Rett Girl doesn't get into a cold bed, or for warming up PJ's after the bath or just for snuggling up and watching a movie with.  A word of caution with heated blankets though, always make sure your Rett Girl is not over heating and never leave a heated blanket on your Rett Girl unattended (never leave on through the night).

We hope we've given you a few ideas for keeping your Rett Girl warm this winter, now it's your turn to share with us - what's your favorite cold weather product?

ps - these are also some pretty great Holiday gift ideas!!!

Thursday, November 8, 2012

The Benefits of a Whole Body Vibration Platform

A Whole Body Vibration (WBV) Platform is a piece of equipment with a motor that brings vibrations to the entire body rather than just a single body part.

CAUTION: As with all exercise we need to make sure our girls are safe, so talk with her doctor and physical therapists to make sure your Rett Girl is strong enough for WBV therapy.

Vibration therapy has been used for thousands of years but has become more mainstreamed since 2001 when NASA started using it to combat muscle atrophy and loss of bone mass to astronauts when they are away from the pull of Earth's atmosphere.  Since then, hundreds of studies have come out about the benefits of bone health and muscle strength, especially in seasoned athletes that have used the platform to increase muscle strength in a short amount of time and increasing bone density in the elderly population and others who are prone to osteoporosis.

What benefits have been seen with the WBV platform?
  • increased muscle strength
  • increased bone density
  • increased flexibility
  • increased circulation
  • pain reduction
  • increased lymphatic drain
  • improved gait
  • decreased spactisity
And the list goes on.

The benefits of WBV have been pretty clearly researched in both the elderly population and recently the research has stretched over to the pediatric population as well.  Whats even more promising is that there is currently a study underway to see how the WBV platform can help children with mitochondrial respiratory chain disorder and Rett Syndrome!  however, don't rush out and buy one until you have all the facts about them and how they can benefit your Rett Girl.

PLEASE NOTE: First, you need to choose a machine that is built for physical therapy rather than one that is built for athletic endurance.  There IS a difference and you need to know about it because buying the wrong machine or using the right machine the wrong way can have detrimental effects on your Rett Girl.

A WBV platform used for therapy has a much lower frequency then those used for athletic performance. Frequency is measured in Hz, look for machines that are less than 30 Hz.  The frequency is directly related to muscle contractions so a frequency of 20 Hz means that your muscles will contract 20 times/ second while you are on the machine.  Most of the research that has been done and shows favorable results uses platforms with lower frequencies, so faster is not necessarily better.  You can actually have muscle damage at Hz that are in the 70's.

The next thing you need to look for is the direction of the vibration.  Some go up and down some go side to side.  The machines that have been shown to improve gait and assist in walking have had an oscillating motion.  An oscillating motion is when the platform moves up and down one side at a time mimicking a walking motion.

Amplitude refers to how far the platform moves when it's vibrating and is measured in millimeters.  Look for machines with an amp of 10mm or less.  The problem here is that many machines don't list their amplitude.

And finally there is a proper amount of time to be on the vibration platform to get the maximum results and stay safe.  Just like frequency, more is not better!  This is a good thing because you don't have to spend a lot of time to get the benefits.  Most of the research has shown positive effects with just 10 minutes a day everyday.  Make sure to start out very slow, just a minute or two per day to start out.  Remember, this is exercise so don't over do it.  Too much time on the vibration platform can cause muscle fatigue and weakness.  If 10 minutes is too much for your Rett Girl at one time you can do 3 sets of 3 minutes each and still get the benefits.

There are LOTS of machines out there and the cost varies from $100 to more than $3,000 so you have to do your homework.  We have found 1 machine that looks like it fits the bill, check it out HERE. This machine has 20 different levels, the low level offers 16.5 Hz frequency, has 0-10 mm amp, gives an oscillating vibration and costs $299. There are many other options out there as well!

People with seizure disorders need to be very cautious with WBV platforms because they could trigger seizures.  This doesn't happen for everyone but you may want to try one out before you buy it to see if there is a trigger and definitely talk with your Rett Girl's neurologist to see if it's safe for her.  Some have also experienced lower back pain while on the vibration platform, watch your Rett Girl closely to make sure she is not in any pain while on the machine.  You may also want to talk with your Rett Girls physical medicine and rehab doctor,  her orthitist and/or her orthopedic surgeon to make sure her body is strong enough for this kind of exercise

As with all exercise we need to make sure our girls are safe so talk with her doctor and physical therapists to make sure your Rett Girl is strong enough for WBV therapy.