Exercise Program

Jill from Melbourne shares her Exercise Program …

This is the exercise regimen that works for me. I’ve included a few tips, some I have picked up from experts and some are my own ideas. I have no professional health expertise, so check any changes you may want to make to your program with your health professional.

One of the hardest things about the illness is understanding it and learning to manage it. It seems that only parts of the information you need about HSP can be provided by doctors and therapists, the rest you must work out yourself.

I am new to ‘serious’ exercise. It has been interesting to learn as I go, while also trying to understand what HSP means. In my case there was no clear onset but diagnosis a couple of years ago helped explain a lifetime of leg and hip pains. It seems that I have always had HSP and it has been slowly creeping up until it was clearly identifiable. A slight limp became a hobble, falling over was common, spasticity was increasing and fatigue was persistent.

Neurologists and therapists have helped me enormously in understanding HSP, but mostly living with it has been how ‘I’ve got my head around it’.

I’m stronger now than I’ve been for many years and it’s been quite a while since I last fell over as I am better able to ‘save’ myself when I do trip. My stamina is also greater and now I can enjoy doing more each day.

Hope there is something useful here for my fellow HSPers.


A few tips:

If you haven’t already done so link in with a good physiotherapy rehabilitation unit (usually in public hospitals).

Ask the physios lots of questions, such as, why this exercise, which muscles is it working, how can I tell which muscles, etc.

Form is all-important in all of your movements. Try to understand this information and so be able to recognize when you are doing each exercise correctly.

Do your exercises every day, they’re not a drag, they are fantastic and will help you with your pain, and may also significantly increase your mobility.

Play some music that you particularly enjoy while you do your ‘routine’.

Avoid ‘parasitic’ movements like grimacing and jaw clenching, they don’t help at all. But do occasionally try smiling, and think about how doing what you are doing is helping you to feel good. (If not immediately then in the longer run.)

Weights: do roughly half of what you think you can do. If you go to a gym (more about that later) and are new to gyms, then the advice given to me by a power-lifting champion (my brother) is: do roughly half of what you think you can do, e.g. if a 2kg weight feels fine to lift, put it back and choose 1kg instead. Do 5kgs instead of 10. This applies to the machines with fixed weights and resistance as well as dumb bells. Always do less than you think you can do, and always do less than you think you should do, and especially do less than others tell you to do.

It is the movement which is important and that you do it regularly. If you don’t enjoy it and if you feel too tired afterward then you won’t do it regularly and in the right frame of mind. You can increase the weights and the repetitions as you go, give yourself challenges and so on, but not too soon. Most gyms have well-trained staff who will help you to design a program to suit and to show you how the various machines work – this is excellent but again follow the advice of an expert and do much less than they recommend at least to begin with. It will help to see how you feel after each gym visit and over a course of visits. If you feel more tired than usual then wind it back (weights, repetitions, speed, etc) a bit for a while. You can increase it later. I never go to the gym two days in a row.

Rest between each set – as long as you feel like, more than a minute, maybe three or more. Learn to listen to your body, after all this is about helping your body and not someone else’s rules, whoever they are.

At first don’t worry about reaching heart rates, etc. Too much detail can make it seem all too hard. Accomplish one thing at a time, and let it be a very small thing. You are only doing this for yourself, there is no exam afterwards and nothing to prove to anyone. Check with your doctor before you start any new exercise program.

The exercise that you get from doing the things you enjoy and have to do (sometimes this is called ‘incidental exercise’), whatever you are able to do, is valuable but do add the purposeful, therapeutic exercises that your physios have given you.

Exercise in water was lovely to do and extremely helpful for my legs but I had to abandon it because the pool chemicals were making me sick – perhaps you can enjoy the benefits without this problem.

Doing some exercise every day seems to be the key. It seems to be about warming, stretching and using your muscles – and the mind likes it too. It’s a great feeling to be actively engaged in improving and helping your own well-being, and exercise itself makes you feel happy.

Have a look into Feldenkrais. There are practitioners listed in phone and web directories. This can be expensive but many of the community exercise groups include Feldenkrais at a low cost. For more information try www.feldenkrais.org.au and www.feldenkrais.com.au

…And if you feel like a day off from all this, to do something else, or to have a complete rest, then do it. Sometimes the body just wants to rest. Get up the next day though and start again, as long as you are otherwise well it is always worth starting again.

My exercise plan:

· Home exercises as prescribed by physios. I do these everyday and they include exercises to strengthen abductor and gluteous muscles (outside of hip and bottom) and knee, with stretches for a variety of muscle groups. It takes up to an hour to do them all.

· Gym – three times a week. Cross-trainer to warm up followed by fixed weight, dumb-bell, body-weight, balance exercises, upper body strengthening exercises, with cool down on the rowing machine. The physio exercises are included in the work-out and I finish off with stretches. Go home have something to eat and rest, even a snooze.

· Horse riding once a week. This is not for everyone but if you like horses then give Riding for the Disabled a call – they have branches everywhere. The benefits of sitting astride a horse for strength, stretch, balance, even spasticity, and fun, have proved to be immeasurable. Grooming, being with the horses and other riders, and volunteering to help in other ways makes for a great day of exercise and enjoyment.

· Feldenkrais. One and often two classes each week. This is not exercise as such but a learning experience for you and your body. What I learn from these classes is helping me to improve the way I move. The benefits so far have been profound with more to come …

· Pilates for core strength occasionally.