Thursday, 23 April 2015

Another Physiotherapist Visit

Recently I had my third trip to the physiotherapist. This is my last appointment for a while. I've got an "open appointment" (which means that I can get in quickly if there is a dramatic change), and another "normal" appointment booked in for three months time.

Since my previous appointment I've been trying hard to get that elusive second set of stretches in, which I now do by getting up a few minutes earlier each day and doing them first thing. I'm currently limiting these to my hamstrings as these are the muscles which get the least stretching in my day-to-day life, but I also realise I'm being a bit stubborn and I'll probably get the calves and roll-downs added in soon too.

Effectively, its a question of trying to introduce stretches into everyday life, so my stretching/exercising changes are:

  • Stretches in the morning (as described above)
  • Raising up onto my toes when cleaning teeth (to exercise calves)
  • Changing the way I pedal my bike to exercise calves
  • Checking my posture to make sure I'm sitting more upright
  • Checking my leg position when sitting so they are not tucked under (hamstrings)
  • Standing with my feet apart sometime to stretch my hip adductor's 
  • Improving my posture when making cups of tea at work (hamstring stretch)
  • Lowering ironing board height when ironing to get hamstrings to stretch.
  • Stretches in the evening
  • Laying with my legs apart in bed some of the time to stretch my hip adductor's
 Has this made any difference? This is a difficult question to answer. I think that I have managed to get my hamstrings to lengthen a bit, but I dont really know for sure about anything else. But, this is the "new" life I lead, and I wont know how much these exercises will slow HSPs trajectory down.

But, I do know that my cycling is becoming very important. We recently had the school easter holidays, where I spent time with my family instead of cycling to work. I didnt realise how much stiffer I had become over this short time until after I did my first set of evening stretches after my first cycle to/from work. The stretches were so much easier after this. It makes me think that keeping active is the key to this, and I must try to make an effort to get some exercise in on days when I dont cycle to work. My physiotherapist thought that cycling was good because it is repetitive.

One other development is that I am now the proud owner of one UNS (universal night split). I have one of these:

The job of the UNS is to hold the foot so that a long term gentle stretch can be given to the foot muscles. I am to to trial this between now and my next physio appointment. In the ideal world I would wear this for 6 hours a day on each foot - but I dont have time for that! Whilst the website indicates that this can be worn at night my physio advises that this should be worn in the day. The agreed trial is to wear this for an hour a day on each foot, and to adjust so that I can feel the stretch. I have noticed that when in bed and laying on my back my feet tend to point away rather than up, so this is a good stretch to do, being against what my feet are wanting to do.

The main problem with the trial is finding 2 hours a day when I am sitting down at home able to do this. I work from home one day a week, and that is easy, and I can grab the odd half an hour here or there when watching the TV or writing this blog (have just swapped from right to left foot!). This means I'm perhaps getting a few hours each week rather than an hour a foot per day. Effectively, without making "drastic" changes at home, I'll only be able to get this length of time using the UNS at work, although that might have a few health and safety consequences!

Outcomes from the trial may be continued use, or to stop using for a while, or to only use when needed. Update in 3 months!

The final observation for the day is that my UNS is indeed an Ankle-Foot-Orthotic or AFO, so in the autumn I'll have to answer my mobility question differently when I get my survey up and running!

Wednesday, 8 April 2015

New study of Dalfampridine/Ampyra for use with HSP

There has just been a new study published which shows that Dalfampridine/Ampyra/Fampridine has use as a treatment for HSP.

The abstract is:
Dalfampridine in hereditary spastic paraplegia: a prospective, open study.
Béreau M, Anheim M, Chanson JB, Tio G, Echaniz-Laguna A, Depienne C, Collongues N, de Sèze J of the Département de Neurologie, CHRU de Besançon, Besançon, France.

Our aim was to support the use of dalfampridine as a treatment for patients affected with hereditary spastic paraplegia (HSP). We performed a prospective, uncontrolled, proof of concept, open trial. We included 12 HSP patients defining the total group (TG) who received dalfampridine 10 mg twice daily for 2 weeks. Efficacy assessment was based on walking ability improvement. The Timed-25-Foot Walk Test, the Spastic Paraplegia Rating Scale (SPRS), and the 12-item Multiple Sclerosis Walking Scale (MSWS-12) were performed before and after treatment. Safety assessment was based on adverse events occurrence. A significant improvement in SPRS (p = 0.0195) and MSWS-12 (p = 0.0429) was noted after treatment in the TG. No serious adverse events were noted. This interventional study provides encouraging results supporting the use of dalfampridine in HSP.

This is an electronic publication ahead of the March edition of the Journal of Neurology.

This paper is reported here:
which reports:

  • 12 patients with HSP were given the drug -- at 10 milligrams twice a day -- for 15 days.
  • 50% of patients (6) improved on 3 measures of walking ability
  • The improvements were clinically meaningful as well as statistically significant
  • The drug was well tolerated and would likely be without significant adverse effects for an even longer treatment period.
  • There is almost no carry-over effect: "If you stop the drug, one day later there is no effect."
  • The drug is currently approved for use in multiple sclerosis

  • Within my HSP survey I had one respondent who was taking this drug for HSP, who indicated that this was being taken to improve gait, and rated this medicine as 5 out of 5 for benefits and would recommend to others.