From a physio who has HSP
US physio Liz W has HSP and so is uniquely placed both personally and professionally to discuss exercise for people with HSP. Because symptoms vary so widely, be aware that what works for one HSPer may not be as effective for another, or indeed may increase the level of some symptoms such as spasticity.
Liz says “I cannot make specific recommendations for any individual because I do not know what their impairments are. We are all at differing levels of ability in this disease process. What I am trying to do is present characteristics of a spastic disease as they relate to deficits in mobility and what specific exercises may be helpful in addressing the deficits.”
Walking is a complicated act. It actually is initiated from the trunk. My professional view as a physiotherapist, and personal view as an HSPer, is that walking starts at the abdominals/pelvis, not the foot.
Decreasing spasticity is vital for HSPers. Oral baclofen (or other drugs) are possibilities for decreasing spasticity, as is the pump, but I can’t speak of those.
Here are some therapeutic exercises that can help alleviate spasticity and associated symptoms:
1. Lying on your back with knees bent, feet flat on the floor, doing belly breathing. Breathe in slowly and deeply, allowing the belly to distend upwards, then breathe out slowly and fully, allowing the belly to collapse back down.
This exercise is for relaxation and awareness and initiates a range of motion to your spine. It is important to NOT ever hold your breath while exercising, so this relaxation breathing forms the cornerstone of all the exercises to follow.
Try 2 sets of 5 repetitions to start with. Then build up to 2 sets of 10 repetitions in each workout.
2. Next, do gentle controlled lower trunk rotations by lowering the knees together to one side and then the other. Slow and controlled. It is a principle that trunk rotation decreases tone/spasticity.
Keep the head and shoulders still (don’t let them rotate). The arms can be extended sideways at shoulder level to give greater stability during rotation and help keep the head and shoulders still.
Start with 2 sets of 10 repetitions to each side, building up to 2 sets of 20 repetitions to each side as your stamina and strength improve. slow and controlled movement is the key to this one.
3. Gently separate the knees from one another to “stretch” the hip adductors. This external rotation motion of the hips is important. The external rotator muscle (obturator internus) forms a sling for the pelvic floor/bladder.
It is my thought that the habitual spasticity of the opposing internal rotators weakens the external rotators, stretching and weakening the pelvic floor = poor urinary control. I won’t talk about incontinence and the importance of pelvic floor and bladder relaxation here, but it is a related topic.
Start with 2 sets of 5 repetitions of knee opening and closing cycles, building up to 2 sets of 10 repetitions in each workout.
4. Now do pelvic tilts, still lying flat on your back on the floor. Flatten the lumbar (lower) spine into the floor and rotate the pelvis upwards (just the pelvis!) keeping the spine in contact with the floor. Do not lift any part of your back off the floor, including your lower back.
Remember, this is rotating the pelvis upwards, not lifting the bum or hips off the floor.
Start with 2 sets of 5 slow and controlled repetitions, paying attention to contraction of the abdominal muscles as you rotate the pelvis. Build up to 2 sets of 10 repetitions as your stamina improves.
5. Pelvic ‘clocks’ are good for abdominal muscles that help control posture and movement. Imagine that there is a clock lying flat on your lower abdomen. Twelve o’clock is at your belly button, six o’clock is at the top of your pubic bone. Your hip bones are at nine and three. You are going to engage your abdominals to move the pelvis. As you work, you will want to isolate the movement of the pelvis so that the upper body stays still and relaxed. Similarly, the hip sockets allow the pelvis to move without affecting the legs.Engage (contract) your abdominal muscles so that they bring your bellybutton down to your spine, lengthening the spine along the floor in response. This will create a pelvic tilt where your clock is now no longer flat, but down at the 12 o’clock position (bellybutton) and up at the six (pubic bone).
Use your abs to rotate your clock down to the side so that the three o’clock hip is lower. Continue to move around the clock, tilting the pelvis until the six o’clock position is lowest. This will create a small arch in your low back. Bring the movement around so that the nine o’clock hip is down and finally bring your bellybutton, the twelve position, to the low point again.
Repeat another cycle in the opposite direction, moving the 3 o’clock hip down. Repeat each direction 2 or three times and then reverse.
6. Glute strengthening: Your gluteal muscles or glutes are your bum muscles. Still lying on your back, squeeze your bum cheeks together as if you were pinching a $100 dollar bill and someone was trying to take it!!!!!!!! Sorry for the visual but in this economy, it could happen, so lock your doors! Hold the squeeze for about 8-10 seconds. Start with 5 or 6 repetitions with a short rest between. Work up to 20 repetitions in a slow and controlled manner but never sacrifice quality for quantity. If you start to tire and can’t hold the squeeze, then stop. Quality always prevails over quantity!
7. Bridging (lifting…) to give “strength” and awareness to the core. Using the hands to stabilise the body by making firm contact between the hands and the floor, initiate the upward movement at the hips, keeping the upper back on the floor and the chin in. You will feel the hamstrings and gluteal muscles contract, as well as the core abdominal muscles, as you elevate the hips.
Lift slowly until the hips are as high as you can go and hold that position for a few seconds. Then lower slowly back to the floor, totally relaxing for a second or 2 before lifting once again. Exhale slowly and continuously as you elevate the hips and inhale slowly and continuously as you return to the floor. Try starting with 5 repetitions, but stop if you get overly fatigued or experience pain e.g. in the lower back. Over time, work up to 10 repetitions in a set, and do 2 sets per workout.
8. Finish off your workout with heel slides, still lying on your back, with one hip rotated out and the heel on that side firmly on the floor (weight bearing contacts generally decrease spasticity). Stop short of straightening the knee out at the furthest point as you slide the heel away from you, as that would provoke a spastic pattern of hip internal rotation, knee extension (locked back), ankle foot plantar flexion/inversion (down and in).
Perform 2 sets of 5 heel slides on each leg to begin with, increasing to 2 sets of 10 slides per workout when able.
Most treatment currently appears to be the pharmacological management of spasticity. But there needs to be room for management of the impairments that spasticity causes. Sitting on a balance pad or a stability ball would also be helpful.