Friday, 20 March 2015

Reflections on 2014 Survey Results

I was asked my thoughts on my recently published survey results.

The thing which I have found most surprising is the lack of evidence of the benefits of the more common medications for relieving HSP symptoms, particularly Diazepam and Gabapentin (1 paper only each) and Tizanidine, Amitripyline and Pregabalin (no papers). 

There is some indication that medication for spasticity from MS and Parkinsons can help with HSP, but again there is no evidence. 

I’m also surprised at the supplements that people take, there were plenty of people taking one or more dietary supplements without being sure that there was any benefit from doing so. 

Overall, there is little evidence to help people make choices about medication and supplements. 

I’ll put the caveat in that my search for papers was 'only' from the PubMed website ( using keyword searches. There may be other papers out there covering these issues which I don’t know about, in which case I’d be pleased to pointed in other directions......

Sunday, 8 March 2015

A trip to the physiotherapist

I have now been to see a Neurophysiotherapist twice, with another appointment in a month's time.

I noted down what I was told in my notebook, which was just after my notes from my appointment at the HSP clinic last year. Here I found out that physio is a good thing to do. Muscles need working on daily in order to slow down HSP's trajectory, and that physio has the same objective as baclofen.

My first appointment showed that I have similar tightness in both legs, that my range of movement is good in that I can hold at the limits of the range and move through the range. I have a touch more clonus in my left leg than my right leg. My sensation is OK. We didn't discuss pins and needles as these are transient. I didnt realise I had any clonus, so I need to look into that!

There were 8 things for me to concentrate on:
  1. When sitting, make sure I don't tuck my legs in. My foot should be flat on the floor.
  2. Calf stretches twice a day, 30s at a time
  3. Hamstring stretches twice a day, 30s at a time
  4. Flex my toes up to strengthen my shins
  5. Raise myself up onto my toes to strengthen my calfs
  6. Stand with my toes on a step and lower my heels to stretch my calves
  7. Lift the outer edges of my feet to help increase range of motion
  8. Concentrate on my posture, keeping up straight.
The advice was to try and integrate as many of these into my normal routine as possible, which makes doing them as easy and straightforward as possible.

The first I found easy, and I hadn't realised how much I was tucking my feet under. I started doing one set of stretches just before bed, but found it difficult to find the time to get a second set in. The other points didn't get much of a look in.

In terms of stretches, my calf stretch was a lunge, concentrating on keeping my heel on the ground, my leg straight and my bum down. I prefer to do this leaning against a wall (like this: My hamstring stretch was to raise my foot up on to a chair (actually chose bed rather than chair) and to concentrate on keeping my leg straight. (like this:

As I have been doing these things I have noticed that my muscles feel like they have been doing some exercise most of the time, which shows that my legs are being worked more than they were before.

Given that I go to Pilates once a week and am regularly cycling to work we didn't look at core strength or general levels of activity. For readers, the advice on hamstrings and calfs applies to everyone!

My second visit was about a month later. We talked about how I had been doing, and I explained that it was difficult to find the time to fit all of these things into my routine. I sought information on how often and for how long I needed to be doing these things.

The detailed points become:

  1. Dont tuck legs in: no change.
  2. Calf stretches: Variation, alternate between doing legs individually and both legs together.
  3. Hamstring stretches: no change
  4. Flex toes up: no new info.
  5. Raise onto my toes: do whilst cleaning teeth (couple of mins, twice a day)
  6. Stand on step and lower heels: didnt discuss
  7. Lift outer edges of feet: didnt discuss 
  8. Concentrate on my posture: no change
In addition, we talked about:

We tried out a Theraband/Pilates band and that can be another way to stretch/flex muscles. I have one to try, for example We also discussed a universal night splint (or UNS) as a way of getting my ankle to stay at 90 degrees, and although the discussion started as something for the future, I'll be getting one to try at my next appointment.

Since this second appointment I've been trying much harder to get a second set of stretches in each day, which is a bit of a challenge. So, I've been trying to do a set when I get up, and I manage this most days. It is clear that my muscles are much tighter in the mornings. I've been raising myself up onto my toes when I'm cleaning my teeth and raising the outer edges of my feet wherever possible. Also, whenever I'm sitting on the floor I'm trying not to sit on my knees because that is my hamstrings at their shortest and I'm trying to get my legs out straight, so there is some re-jigging there as well. Actually this happens quite a lot (reading stories to children at bed time, playing Lego/cars/trains/etc, sorting laundry etc.) I'm prefering to do my hamstring stretches standing rather than sitting on the floor, and I need to try and bring some variation into the mix.

I also told my Pilates instructor about my hamstrings being short so that she can give me advice about if I need to do any of the exercises differently. For example, my Physio suggested that I should perhaps use a stool/step instead of kneeling for some exercises, which I had been doing as it is very difficult for me to get an upright neutral back whilst sitting with my legs out straight in front of me.