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Julie's Website

Physical Therapy--updated in 2008!

New! PT 2011
August 2008 Bethlem Myopathy/Ullrich CMD conference notes
October 2005 Bethlem Myopathy/Ullrich MD conference notes
Update 2006
Update 2005
Update 2004
Julie's Hypotonia Story
The Medical Puzzle
The Muscle Biopsy
The Diagnosis
Physical Therapy--updated in 2008!
Seating at school
Julie's Wheels
The Sleep Studies
Julie's flexible Daddy
Bethlem Myopathy--DNA and Muscles
Julie's Bethlem Myopathy Book

Julie's physical therapy--then, later and now


Some of Julie's first independent steps in PT! She was just shy of 17 months old. She did not walk outside of PT full time for another week or two, but as you can see here she was doing a great job in PT! You can see she is using what the PT called "high guard" which is her hands up around her ears for balance as she walks. It took about a month of really walking full time for those hands to come down.


We used anything and everything to motivate Julie to stand and reach and walk. Here you see her reaching for bubbles. I think I blew myself blue in the face with all the bubbles I blew for her in 6 months of PT three times a week! You can see the little cart in the background to the right which Julie spent a lot of time pushing that fall. She could not control the cart at all at first, but over three or four months, she gained control and was able to push it without any help.


These pictures are from the end of Julie's six months of physical therapy from age 12 to 18 months. Julie got quite good at walking on the treadmill, but always preferred to hold the PT's hand rather than walk alone or hold the bar of the treadmill.


Julie standing on the platform swing! She HATED the swing at PT at first and it took a full month for her to tolerate even sitting in my lap on the swing. Eventually, she was able to sit and even stand on the swing, although she did not want to stand for very long and would not stand while the swing was moving. This was another PT situation where I used a lot of distraction blowing bubbles and singing to her.


Julie practices walking on the balance beam. It took a lot of work showing her how to walk one foot in front of the other on the balance beam. She wanted to shuffle along and the motor planning took quite a lot of time to sink in.


Double whammy! Julie works very hard to stand on the squishy airfilled disc while getting the tactile experience of playing in a tub of various sized dry beans. The beans are also a great distraction from the hard work of standing on that disc. Notice the toes curling for balance.


Julie would often go to the ball pit first thing upon arriving at PT. She loved it! It's a great sensory experience and as she became able to stand up, the PT made the ball pit into hard work by having Julie bend down, pick up a ball, and then stand up and pass it through the hole in the top. When Julie was tired from doing this a couple of times, she would flop down on her stomach and "swim" in the balls!

That was then...this is later....


In these pics, Julie is 4.5 and still working hard in therapy. Her PT at the time was trained in neurodevelopmental therapy (NDT). I don't pretend to understand it well at all, but the basic idea is to encourage normal patterns of movement and balance. It's very hands on as you can see by how the PT is working with Julie on the ball. Julie is playing with Barbies as a distraction from the work that the PT is making her body do.


Julie is now both balancing on the ball AND having her feet's senses stimulated by placing them in a tub of beans. The PT places beans between Julie's toes and then asks her to wiggle them out. This irritates Julie no end!


This is one of endless "balance beams" that Julie and her PT build together for Julie to then walk on each piece. At least that was the intention...Julie has other plans today and it pushing a Barbie on the scooter board along the balance beam instead. She does try to thwart her therapist and it takes a lot of cajoling and praise to get her to do tricky things.


Here's Julie using her legs to push herself along on the scooter board. Blowing bubbles as she goes was her idea! Interestingly, it makes the whole process harder and more cumbersome for her. This position is an important one for Julie to work on in therapy because her neck is quite weak from her congenital myopathy.


What a difference on the platform swing! Julie is swinging and spinning all around now...the faster the better! Getting her used to the feeling of movement has been very important. I wish I knew about how important it is even earlier. Between PT and OT in the past year, Julie has learned not only to tolerate all this movement, but also to enjoy it!

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This is a few years ago....

Julie does her stretchies with her PT

Julie has aged out of the public system which had been paying for PT and we now use insurance to get it privately.  She does get a PT consult at school, but direct therapy at school is pretty much non-existant as her "educational" needs for PT are few.  Since starting with a new private PT, we have added hamstring stretches to our PT and nightly routine.  Seems that Julie's hamstrings have always been a bit tight and the PT at the neurologist in July of 2004 noticed that her range of motion was becoming mildly restricted.  As contractures are a potential concern with Bethlem Myopathy, the PT started us stretching Julie's hamstrings each session and nightly at home.

Julie going after a puzzle piece on the scooter board.

Julie is still doing work on the scooter, she is on her tummy, using her hands to propell her as she goes after a puzzle piece on the floor.  Her mission is to then return it to her PT who is on the other side of the room!  This kind of work is very tricky for Julie as it works her neck muscles as well as her arms and legs, but she is doing better with it each year.  She can do scooter board work much longer now than ever before!

Julie balances on the "bumpy stones."

Julie has been working on her balance pretty much since day one of PT all those years ago.  Here, she is working on her balance by walking on the PT's "bumpy stones"--rubbery humps with bumps all over them.  They compress somewhat under Julie's weight, adding to the challenge of walking on them.  Julie can do balance exercises like this one more easily in her shoes with her orthotics, which is why she is barefoot!

Another challenge to Julie's balance...toe touches while standing on bumpy stones!

Another balance challenge for Julie...standing on the bumpy stones and then alternating feet doing toe touches on the cones!  Her PT is kneeling in front of her, giving Julie some verbal cues to remind her which foot to use next and to spot her in case she looses her balance.  As Julie fatigues, her accuracy and balance fall off considerably and she starts to step off the bumpy stones to catch herself as she loses her balance.


Another thing Julie continues to work on in PT is perfecting her jumping skills.  As a child with myopathy, she is lucky to be able to jump at all.  She can jump forward a good 18 inches or more now, although she can't repeat jumping as far over and over.  As she goes, the distance she can jump declines from fatigue.  Here, she has the added challenge of being barefoot and jumping on a mat.  This jump was a bit of a miss since she didn't land right on the circle.

PT Continues!  This is now!
Julie continues to go to physical therapy every week.  She has made excellent progress with her balance and coordination skills!  Strength and stamina are still delayed, but the impact is not as great as you would expect because Julie has learned to compensate by using many muscle groups instead of just one or two.  She is a hard worker in PT, attending after a full day of school, and an excellent negotiator to this day!

Working on balance on the "bumpy stones."

Using one leg at a time on the scooter board

Totally wiped out from working very hard in PT!