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.
Exercise is essential for me to manage my function in the face of decline. I work out in a gym as well as at home on a daily basis, varying the activity. At home I use a spin bike, punching bag, TRX (suspension training), floor exercise, and stretching routines that include yoga and direct muscle-specific stretching. I feel “good” and accomplished after I am finished. Plus I burn calories. Plus I socialize at the gym. After I am finished on the elliptical trainer (for example) I can feel that my walking is less stiff. Instead of staying on the outside border of my left foot when standing, I can feel and make my left foot roll to the base of the big toe for push off during walking. I am lucky that I like exercise and have a spouse who encourages me to exercise daily. That is what I mean by essential.
As much as possible exercise should be weight bearing, weight shifting from one side to the other and reciprocal, i.e. when one set of muscles contracts the opposing muscles relax; for example, when the thigh (quadriceps) muscles contract during walking, the hamstring muscles at the back of the leg should be relaxed. This is called reciprocal inhibition* and is at the crux of spasticity where there is no reciprocal inhibition of the opposing muscle group, so both quadriceps and hamstring muscle groups are simultaneously contracted. Everything contracts to a varying degree making movement stiff and unable to adjust to the fine tuned demands of balance. In all my exercises I am trying to incorporate motions that can decrease spasticity, at least on a temporary basis.
Walking involves reciprocal rotation** around the bellybutton. People with spasticity don’t do this because the large muscles rule and it is smaller muscles that need to participate in this rotation task.
I will talk first about the stationary bike because it is often in my exercise routine. I chose a low-end spin bike. I wear bike shoes that clip to the pedal, allowing resistance on the upstroke as well as the downstroke. I include the following variations on the bike:
1. If you are looking to just loosen your muscles, then sitting on the bike while pedalling should be sufficient.
3. jumping (sit –> stand) and
4. climbing-in-standing by leaning forward on the handlebars. My hips can reach their full extension range in weight-bearing, which I like very much. My pelvis is freed up from sitting so I can practise shifting my body weight side to side on each downstroke.
To get more out of the bike workout, I stand, jump and climb-in-standing for leg strengthening, loosening and other walking characteristics that are generally absent in spastic gait.
My routine of late has been 35 minutes. I warm up for two minutes in sitting and then 10 minutes in each of the 3 standing positions with a minute in between to drink water or exercise arms to keep the heart rate elevated. On my better days I use the first 20 seconds of each minute to pedal as hard and as fast as I can.
By choosing a bike on which you can stand up, you are able to weight bear, alternate working sides and promote reciprocal activity of the flexor and extensor muscles***. I would also suggest that on the downstroke you should push the heel down and allow the toes to come up, in an attempt to prevent the calf muscles staying contracted or in spasm.
Thanks for reading.
An example of reciprocal inhibition can be found in walking. As you step forward to put your heel down, the calf muscles should relax to allow the muscles on the top of the foot to lift the toes and the front of the foot (the dorsiflexors) so they do not catch the ground. If the calf muscles are contracted, the toe can catch on the ground or the ball of the foot can scuff the ground.
If the back of the thigh muscles (hamstrings) are tight or if spasticity in them is caused by the stretch of putting the leg forward, then the muscles at the front of the thigh (quadriceps) can be prevented (inhibited) from straightening the knee for weight acceptance. Conversely, when pushing off the back foot in the action of walking, the quadriceps muscles should be relaxed. If the quadriceps are contracted or in spasm (spastic), then bending the knee to swing the leg forward may be impaired and the leg moves forward stiffly.
Rotation at the pelvis is how we advance ourselves efficiently in walking. If we don’t fully extend our hips (pushing the thigh of the back leg behind us and the thigh of the front leg out in front of us) then we don’t rotate the pelvis efficiently. If we don’t rotate, we take shortened steps and there is likely to be minimal weight shifting. This is shuffle walking.
Place your hands either side just above the top of your legs and feel the bony protuberances of your pelvis. As you alternate legs in walking, feel those bony landmarks moving back and forward. Watch the movement of the pelvis in other people walking. Practice on a treadmill set on a grade or find a suitable sloping surface outside. Take a big step uphill to activate this motion of rotating the pelvis.
Exercise is essential for me to manage my function in the face of decline. I feel “good” and accomplished after I am done. Plus I get to burn calories. Plus I get to socialize. After I am done on the elliptical (for example) I can feel that my walking is less stiff. Instead of staying on the outside border of my left foot in stance I can feel and make my left foot roll to the base of the big toe for push off. I am lucky that I like exercise and have a spouse who encourages me to exercise daily. That is what I meant by essential.
***flexor and extensor muscles
I use the generic term flexor/extensor to describe function. In the leg anything that shortens the leg flexes the leg. In the motion of walking, the hip, knee and ankle shorten up for clearance of the ground as the leg swings forward. This would be hip flexors (front of the hip, iliopsoas), knee flexors (hamstrings, back of the thigh) and foot dorsiflexors (anterior tibialis, top of the foot). This is a general list.
Extensors straighten or make the leg longer so we can stand on it: hip extensors (buttocks, gluteal muscles), knee extensors (front of thigh, quadriceps) and ankle plantarflexors (gastrocnemius, back of calf).
This is a very interesting article. ❗
I also find a benefit from exercise in a similar way that my “stiffness” reduces and all of a sudden I feel somewhat freer again.
I would like to discuss what I’m doing with Liz and maybe even arrange a consult if useful ❓
Editors Note: Unfortunately Liz lives on the east coast of the USA. A viable alternative might be to see a neuro-physiotherapist, who should be able to interpret what Liz is talking about and what you are experiencing with exercise, and guide improvement to your program.
This is very good content, and I will look to apply this in my exercises. Thanks!
Editor’s Note: That’s good, glad that it might help, and you are most welcome!
I am 43 years old and I’ve been diagnosed with HSPG7
I am feeling like my world is upside down.
I just try to understand what kind of exercise are good to do? I try to do everything for my symptoms
Good practical advice