I've been doing my stretches now for just over 3 months. The main thing to report is that my hamstrings are getting longer. I cant touch the floor with my fingertips yet, but I'm much closer now than I have ever been able to (well, since childhood, I dont remember if I was able to do this as a small child.....)
This is quite a pleasing result in itself, and shows that the advice from my physio is good - as this was one of the aims. I'm looking at this with the following perspective - improvement in movement now helps slow HSP's trajectory down.
Back in the past (before we had children) I used to go to the gym regularly, and I did regular stretches there too. I didnt notice any lengthening of my hamstrings there (went a couple of times a week for a few years). The main difference is that I've had precise advice about this, although stretches that I used to do are similar to those now, and that I'm now doing this twice a day. Perhaps its the twice-a-day part, perhaps I'm holding them for longer now. I'm not sure.
On this topic there was a link on one of the Facebook groups to the Australian HSP site with a letter from Dr Fink, which was posted in February this year.
I quite like the general concept of this. I'll simplify the whole thing into a couple of points:
- Find out what makes walking difficult. Get advice on how to improve this.
- Frequency of exercise is as important as what you are doing
- Stretching, balance, core exercises, and aerobic conditioning are all important.
- You should expect some improvement
Reviewing what I do against this, its all there - I get balance/core from Pilates and aerobic from cycling to work.
The full letter is copied below, and you can read it in the context of the site here:
http://www.hspersunite.org.au/exercise-in-hsp/:
Hello everyone,
As requested, this is a brief overview of my recommendations for exercise in HSP and PLS (Primary Lateral Sclerosis). One caveat: my recommendations are not based on scientific research of exercise methods in HSP and PLS. These recommendations are based on talking with many individuals with gait disturbance and finding what seems to be helpful.
Identify the factors that make walking difficult. HSP and PLS affect walking differently in each person. For some individuals, spasticity (affecting hamstrings, quadriceps, adductors, “heel cords” in variable proportion) is the major problem. In other individuals weakness (hip flexion, foot dorsiflexion, hamstrings for example) or endurance is the major problem. Often weakness (in certain muscles more than others) and spasticity (in certain muscles more than others) occur together (in variable proportions) with balance difficulty and slowness in muscle activation.
Consultation with a neurologist, physiatrist, physical therapist, personal trainer are often helpful in identifying which factors are particularly problematic. This is the basis for developing a function-specific exercise program.
The basic concepts are to
a) find the problems,
b) address the problems specifically both as isolated exercises and importantly, through complex task-based exercises;
c) keep score of your progress,
d) when tasks become easier, change the routine to make things more challenging;
e) expect improvement (recognizing it will be slow);
f) core muscle exercise and aerobic conditioning are key.
Here are a few notes:
Develop an exercise program that:
a) “starts low and goes slow” (begin with something you’re capable of and increase the frequency and intensity by approximately 10% each week)
b) is graded (increasing intensity and frequency)
c) is monitored (by you, keeping track of performance, and by your therapist or trainer)
d) addresses the function-specific goals
e) is varied (monotonous routines are difficult to maintain)
f) has days off each week where other exercises are performed
g) ideally is done with exercise partners (activities that are performed completely alone are difficult to maintain).
Both complex/contextual exercises (e.g. climbing gym, water aerobics, kicking a weighted ball) and isolated exercises (leg lifts, abdominal exercise “crunch” machine at the gym) are useful.
In my view, the value of stretching, balance, core exercises, and aerobic conditioning can not be overstated and should have a central place in the exercise routine. In my opinion, “exercise frequency” (4 to 10 times a week) is at least as important if not more important than the intensity of a given exercise period.
I hope this is helpful.
Sincerely,
John
John K. Fink, M.D.
