Physiotherapy is especially important for a person with limited movement, like someone with leukodystrophy. Without physiotherapy, muscles stiffen up and cause pain/deformity. Furthermore, when muscles stiffen up they press on vital organs like the intestines and heart. This increases the risk of problems like constipation or cardiovascular problems.
Again, you need to be in frequent contact with doctor and physiotherapist because the person with leukodystrophy will have changing needs as the disorder progresses. However, this is a basic guide of stretches that may help keep the body supple. The person with leukodystrophy is referred to as 'she', and a child in this - apologies if 'she' is actually an adult 'he'. You will need:
- Large Physiotherapy exercise ball
- Trampoline or similar bouncy suface, e.g. a mattress
This should be done once a day, prferably in the morning.
1. Uncurl her fingers, and flex them a few times, to stretch the muscles in her hand, and move each hand in circles – ten circles clockwise and ten anti-clockwise, thus flexing the wrist muscles
2. Repeat with the ankles what you did with the hands
3. Holding the leg up with one hand at the calf (muscle behind the shin), push the foot back gently towards the shin, just enough until you feel resistance from the foot to go further. You should feel the muscle on the calf flex when this happens. Push back five times for each leg, and move each foot in a few circles afterwards to relieve tension.
4. Hold the arm with one hand on the wrist, and the other hand palm to palm with her own hand. With the palm-to-palm hand, push back gently until the hand resists and you feel the underside of the wrist flex. Do this five times for each hand, and then move each hand in a few circles afterwards to relieve tension. Re-bandage the tennis balls.
5. Hold each arm, one of your hands holding her wrist and one holding her shoulder. Bend the arm at the elbow, five times, then pause for a few seconds, and then another five times. Do this with both arms, and similarly bend each leg at the knee and hip in the same way.
6. Hold each leg at the ankle. Bend the knees simultaneously as far up towards the chest as they will easily go, stretching out the back. Do this five times, and then pause. Now do this another five times, but this time, hold in the folded position with the back stretched out. Turn the legs to the right side, then to centre, then to left and then to centre five times, keeping her back flat on the surface. This swivels the hips.
7. Hold each leg at the knee and the calf muscle. Separately lift each leg upward so the sole of the foot points toward the ceiling, keeping the leg straight at all times. This stretches out the back of the thigh and the calf. Do this five times with each leg, making sure not to elevate the leg further than it easily goes.
8. Turn the child onto her stomach. Hold the leg bent at the knee, with one hand cupping the kneecap, the other holding the ankle, and lift the thigh very slightly upwards before letting it down again. Do this five times to stretch the hamstring and the abdominal muscles. Make sure you do not force upwards if the thigh doesn’t want to go.
9. Turn the child back onto her back. Place her arms straight by her sides and take her hands. Keeping her arms reasonably straight, raise them up until her fists point towards the ceiling. Still keeping her arms straight, continue the arc of movement down until her shoulders and upper arms are parallel with her ears. She should now look as though, were she standing up, she were stretching both arms up to reach something above her. Still keeping her arms straight, follow through the arc of movement again in reverse, until her arms rest once more by her sides. Do this five times.
11. Very carefully take the sides of her head in your hands, and rotate her neck to the right, back to centre, to the left, and back to centre. Do this five times to stretch her neck muscles.
12. Lay her over the large Physio ball, and, holding her in place with one hand, gently tip the ball from side to side a few times, and back and forth. This should strengthen her back muscles. If she can tolerate without nausea, push the ball up and down a little, allowing slight bouncing movement.
13. Have fun on the trampoline/mattress! Lie her on her back on the trampoline, and bounce her slightly, taking care she doesn’t choke. She should be relaxed and supple now, and this will allow movement of her muscles, warming them down. If she likes it, also bounce her lying on each side of her body, and on her stomach.
Braces and Splints
Best not to go overboard with these if the person is quite supple and everything looks normal. However there are a few that will greatly help:
- Back brace: This can be worn when sitting upright in her wheelchair, car seat, or any other seat, and stops the person slumping sideways, as too much sideways slumping can cause a curvature of the spine that's impossible to correct without surgery.
- AFOs: This stands for ankle-foot orthoses - and are braces that keep the foot at right angles to the leg. Without these, sometimes the feet can stick into a pointed position, making stretching them, or using a stander (see below), impossible. Sometimes AFOs can help keep the knees straight as well. AFOs can be worn intermittently through the day, but are definitely worth wearing if possible, when in the wheelchair or car seat. You can also get HKAFO which stands for Hip-Knee-Ankle-Foot-Orthoses. These are like AFOs but also keep the hips and knees in correct alignment too. This may be useful if the person with leukodystrophy gets frequently dislocated hips.
- Hand splints: These may be useful to wear intermittently throughout the day, in wheelchair/car seat, or at night to stop the hands becoming stuck into an unyielding fist shape.
Stander Time
The importance of time in a stander is being more and more understood now. When a person with leukodystrophy never supports their own weight, they can lose calcium from their bones, making them brittle. That means lifting them into wheelchairs, bathing or doing stretches can cause bone breaks. As well as possibly using calcium and vitamin D supplements, you can use a stander, which lets a person who can't move bear weight to help retain calcium in the bones.
A supine stander - one where the person's back rather than stomach is supported, is probably best for someone with leukodystrophy, as it makes breathing easiest. The height when standing and angle of recline (how horizontal or vertical it is) can both be adjusted. It should be low at first, and nearly horizontal, with only a short time spent in the stander. As strength increases, it can be raised to (nearly) vertical and time in it can be increased. I would suggest in the evening, with a distracter activity like a film, tape, story etc. would be a good time and way to do 'stander time'.
Botox and Phenol Injections
Again, talk to your doctor about this, but if the person with leukodystrophy is really stiff, sore and uncomfortable, can't use a stander due to pointed toes, and stretching is not helping, they can undergo botox and/or phenol injections which help loosen the muscles. From what I know, these are done under a general anaesthetic, after a nerve conduction test has been performed to locate the nerves to be injected (electricity is sent down the nerve, and time it takes to travel to the end of the nerve is recorded). The botox and phenol paralyse the muscles, stopping them from becoming stiff, twisting or spasming.
Use of dummies/soothers/pacifiers
One more point: In children extended use of a dummy/soother/pacifier can have the benefit of keeping the child's jaw flexible. In some cases due to lack of movement, the jaw tightens to the point that it's very hard to get their mouth open at all, whether to suction or to brush teeth. Use of a dummy in the car, at night or when relaxing can help hold the jaw open for periods of time and prevent it stiffeing up. In adults, a mouth guard, possibly such as that used to prevent teeth-clenching/grinding at night, might well do the same thing.
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