I saw this paper in a tweet - thanks to @HSPersJapan for this. It was published in 2016, so I'm a little late spotting this!
Researchers from Plymouth University studied 22 people with HSP and compared them with 19 matched controls. The study either cooled or warm one leg and measured the effects, including walking speed, stiffness, movement.
The study showed that cooling decreased the walking speed for all participants, but the speed of the HSP patients decreased by more than the controls. The study supports this commonly reported symptom for those with HSP. If both legs were cooled it is expected that the speed reduction would be larger.
When legs were cooled the spasticity increased, which contradicts previous studies which had used cooling as a treatment in similar conditions. When legs were warmed the spasticity decreased. Further research is reccomended in the use of insulating garments to reduce the effects of coolness. It is suggested that maintaining and preventing heat loss may be an effective measure to help peolpe with HSP.
The participants with HSP were recruited through the UK HSP support group.
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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Friday, 26 January 2018
Friday, 19 January 2018
Symptoms update - toe walking and the need to sit
OK, so I go for months without a symptoms update and then several come along at once. This post comes from a comment made about my
walking, and from my own observations going out in the evenings.
Firstly, the walking. My wife observed that I always seem to walk around at home on my toes rather than on my feet, and after she mentioned it I know that this is now a regular thing for me. I’m not sure when I moved from walking on feet to walking on toes, but it happens now. More detail: When we are at home we take our shoes off, so all of us walk around in our socks. I have noticed that I only walk on my toes at home, I don’t do this when wearing my shoes out an about. At home, walking on my feet feels more difficult, and therefore I wonder if this isn’t a bit more spasticity showing in my legs. The other observation is that with my insoles my heels are a couple of centimetres higher than without my insoles, so perhaps my feet are more used to walking with heels slightly higher.
Secondly, when I have had a busy day I feel the need to sit down towards the end of the evening. This was certainly true at my office Christmas do, where we were standing for a good while. I can feel that my legs are beginning to be more tired towards the end of the evening, and the need to sit gets stronger and stronger. Perhaps another example of more spasticity, or perhaps an example of physical fatigue starting to show itself. When I am at home there are many more reasons to sit down, so I don’t notice this as much – and I am often just putting in a few more flights of stairs or laps of the house to get to the next fitbit badge.
Firstly, the walking. My wife observed that I always seem to walk around at home on my toes rather than on my feet, and after she mentioned it I know that this is now a regular thing for me. I’m not sure when I moved from walking on feet to walking on toes, but it happens now. More detail: When we are at home we take our shoes off, so all of us walk around in our socks. I have noticed that I only walk on my toes at home, I don’t do this when wearing my shoes out an about. At home, walking on my feet feels more difficult, and therefore I wonder if this isn’t a bit more spasticity showing in my legs. The other observation is that with my insoles my heels are a couple of centimetres higher than without my insoles, so perhaps my feet are more used to walking with heels slightly higher.
Secondly, when I have had a busy day I feel the need to sit down towards the end of the evening. This was certainly true at my office Christmas do, where we were standing for a good while. I can feel that my legs are beginning to be more tired towards the end of the evening, and the need to sit gets stronger and stronger. Perhaps another example of more spasticity, or perhaps an example of physical fatigue starting to show itself. When I am at home there are many more reasons to sit down, so I don’t notice this as much – and I am often just putting in a few more flights of stairs or laps of the house to get to the next fitbit badge.