Amanda reported some work that has recently been completed at Plymouth University. Many people with HSP report that walking becomes more difficult when they are cold, and Amanda reported some work which sought to investigate the effects of heat on nerve and muscle function..
The general symptoms that are reported are that people feel stiffer, that they have more falls, and that it seems to take longer for messages to get from the brain to the legs. This research was undertaken in two parts, and Amanda was principally reporting the second piece of work.
The first piece was undertaken in 2010/11 where participants were subjected to warming and cooling of their legs in the laboratory. These results showed that when legs were cooled there were negative effects, and when legs were warmed there were positive effects. This research can be seen http://www.plymouth.ac.uk/pages/view.asp?page=38252
This first piece of work led to a product trial of some wearable heating pads, as discussed at an HSP support group meeting in 2011. These were neoprene sleeves which could be warmed in hot water and then put on calf muscles on the front and back of the leg. These were tested being worm for periods of half an hour. The second part of the research sought to answer two questions:
1) Can external warming have the same effects as shown in the lab?
2) Is there any benefit from keeping the neoprene on?
The research sought to measure temperature, walking, tapping, blood flow, stiffness and muscle strength - all of which can be measured. Two groups were used, 21 people with HSP and a control group of 16.
The research shows that wearing the neoprene can give the same benefits as shown in the lab. Applying the warming gives a statistically significant increase in walking speed and tapping. The research also showed that there was an increase in blood flow with the neoprene, but this was also true of the control group.
As mentioned, the main part of the trials looked at the effects after applying heat with the neoprene for half an hour, and some investigations were made into keeping the neoprene on. These results showed no clear benefits. The objective is to find practical application for these findings, and Amanda discussed where the research would go next, and the thought is to undertake a case study after Christmas when it is generally cold outside. Amanda noted that people with Cerebal Plasy can report the same temperature effects as those with HSP.
Various questions were asked by the audience including simply replacing one set of warm neoprene with another. Amanda and the others noted that caution should be applied as they have not looked at issues like skin integrity which may come into play - but they did note that the wearing of tight garments may be able to retain some natural heat and affect spasticity. I note that the wearing of many layers can also retain heat, they dont have to be tight to do that then.
After Amandas presentation, Jon Marsden and Kate Winstone took questions about all three presentations.
Another area where research could be undertaken is the rehabilitation of pes cavus (arched feet). There would appear to be no previous work in this area. Pes cavus arises because some muscles become weaker and others become stiffer, and this effect can change over time.
One way of treating this is to use in shoe orthotics/insoles to change the distribution of weight when walking, although it is noted that orthortics can change peoples back postures. Other ways could include high-tech clothes (this reminded me of the high-tech swimming outfits which were "banned" from the London Olympics in 2012) - perhaps a special sock could be designed for pes cavus. Plymouth are looking to undertake research into this, and are seeking to establish focus groups. Various audience members showed their in-soles and shared their experiences.
The final point which was discussed in the question sessions was that of generalising exercises. Each person who is given a set of exercises by their physio has been given them for a reason. As it is easy to spot with a room full of HSP-ers, each has their own way of moving, and this leads me to believe that each person would potentially need a different set of exercises.
The final point, which I'll expand on more in another post was how to find a physiotherapist with a neurology specialisation and an interest in HSP.
First answer - talk to others who have used one and get a recommendation.
Second answer - look at ACPIN (the Association of Chartered Physiotherapists in Neurology) http://www.acpin.net/ There appears to be a load of useful links and resources on this site - hence a further post comingup.
From this site you can also get to the CSP (Chartered Society of Physiotherapy) which allows you to search for people near where you are (in the UK). http://www.csp.org.uk/physio2u/search/table
A quick search here shows one practice which specifically mentions HSP http://www.specialist-physiotherapy.co.uk/ who are based in Kenilworth.
This blog records my journey to Hereditary Spastic Paraplegia (HSP, also known as Familial Spastic Paraparesis or FSP). I was diagnosed with SPG4 in 2009 when my wife became pregnant with our first child. I currently wear insoles, do daily stretches and weekly Pilates. I take medication for my bladder. I tweet about HSP, RareDisease and other things @munkee74.
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Wednesday, 9 July 2014
Thursday, 3 July 2014
AGM2014: Does physical activity improve quality of life in HSP? - Kate Winstone
Kate Winstone gave an overview of work that is currently being undertaken at Plymouth University. A number of people at the AGM took part in research on the day, and Kate was explaining.
Kate is examining the benefits of physical activity. It is known that there is a lower level of activity in people with neurological conditions, compared with the normal population. It is also known that physical activity can bring an improvement to quality of life.
The general question is would physical activity improve the quality of life? A study has shown that for people with cerebral palsy an increase in physical activity does not lead to an increase in quality of life. Kate is researching what the outcome is for people with HSP.
If her research confirms that increased physical activity does increase quality of life, then follow on work can be undertaken to establish:
Kate is examining the benefits of physical activity. It is known that there is a lower level of activity in people with neurological conditions, compared with the normal population. It is also known that physical activity can bring an improvement to quality of life.
The general question is would physical activity improve the quality of life? A study has shown that for people with cerebral palsy an increase in physical activity does not lead to an increase in quality of life. Kate is researching what the outcome is for people with HSP.
If her research confirms that increased physical activity does increase quality of life, then follow on work can be undertaken to establish:
- What types of physical activity? - strength or flexibility exercises, for example
- When, over the progression of HSP would this be best? - at the beginning, later on, etc.
- Which types of HSP would gain the most benefit?
Effectively, Kates research seeks to identify if there is a correlation between physical activity and quality of life for people with HSP.
This work should have the following benefits:
- An increased understanding of the importance of physical activity
- Could lead to further research being undertaken
- An increased awareness of HSP
- Provide support for finding.
Kate observed that there was limited evidence for the general benefits of physio on people, which means that it is more difficult to obtain funding for research.
Kate then went on to describe the study being undertaken. She had been contacted by 35 members of the HSP group who wanted to take part, and 22 were being investigated on the day. (I did apply, but the spaces were all full by that time).
The aim of the day was to assess participants using the Spastic Paraplegia Rating Scale (SPRS). Each person went to four different "stations" set up on the day testing:
- Speed of walking/stair climbing
- Muscle power and reflexes
- Memory
- Senses and sensations
After the assessment participants would have to complete an on-line survey, and after that the data needs to be analysed.
Kate will share the results of her research with the HSP group, with those involved with physiotherapy, and she hopes to produce abstracts and get a published paper from this work.
Post AGM Investigations:
1) Here's one of many possible links showing the relationship between physical activity and quality of life.
2) The SPRS can be seen here: http://www.neurology.org/content/67/3/430.short , which concludes: "Application of SPRS requires less than 15 minutes and does not require any special equipment, so it is suitable for an outpatient setting. Interrater agreement of SPRS was high (intraclass correlation coefficient = 0.99). Reliability was further supported by high internal consistency (Cronbach α = 0.91). SPRS values were almost normally distributed without apparent floor or ceiling effect......The Spastic Paraplegia Rating Scale is a reliable and valid measure of disease severity."
Whilst the article requires a log-in to see the full text, the SPRS scale itself can be downloaded as an attachment from here: http://www.neurology.org/content/67/3/430/suppl/DC1.
There are 14 steps. the first 13 are ranked on 5 point scale:
1) Walking distance without pause
2) Gait quality
3) Maximum gait speed
4) Climbing stairs
5) Speed of stair climbing
6) Arising from chair
7) Spasticity in hip adductor muscles (those which bring your legs back in line with your body)
8) Spasticity in knee flexion muscles (those which cause your knee to bend)
9) Weakness in hip abduction muscles (those which move your leg out of line with your body)
10) Weakness in foot dorsiflexion muscles (those which raise your toes or foot up)
11) Contractures of lower limbs (measure of permanent shortening of hip, knee and ankle muscles)
12) Pain due to HSP symptoms
13) Bladder and bowel function
The 14th step is identifying if any of a list of complicating signs are present.
You can also see the SPRS as a part of this fuller form on the SPATAX network website. http://spatax.files.wordpress.com/2013/09/fichecliniquespatax-eurospa-2011.pdf