Part of the process from my appointment at the HSP clinic in London last year has (almost) finished with me being given a pair of custom in-soles.
I went for an appointment to see the orthotics team in June. I have "overpronation" - which means that as I transfer my weight from heel to toe walking forwards my foot rolls inwards. So, the weight of my body is borne by the inside edge of my foot, rather than the whole foot. This leads to excessive wear on the inside edges of my shoes, and overpronation can lead to stability problems. Overpronation is common with tight calf muscles.
This style of walking can lead to calluses - hard, thicker skin that develop when the skin is exposed to excessive pressure or friction (http://www.nhs.uk/Conditions/CornsandCalluses/Pages/whatarecornsandcalluses.aspx) . Indeed I have some of this on my feet, on the insides near my toes. The advice is to manage this by visiting a chiropractor, who would remove some of that thicker harder skin. A treatment would be to remove the cause, which in the case of HSP may prove difficult!
However, the analysis by the orthotist was that I have good motion and strength in my legs, and so the reccomendation was to give custom in-soles a try. So, imprints were taken of my feet by me putting each foot in a box of foam (for the florists amongst you, a bit like Oasis, but black instead of green). These were sent away so that EVA insoles could be made. These would be soft at the toes and have a rigid back section.
Earlier in September I went to collect these. (they were ready earlier than that but there was much faffing around with the appointment). Where I am able to remove the insoles of my shoes it is an easy fit to get the insole in. However, for most of my shoes removing the insole is impossible. In this case I need to adjust the laces to allow a little more room.
We tried them in several of my shoes - I was advised to bring a couple of pairs in - and it is clear that they do correct the overpronation. So, hopefully that will cause my calluses to ease off (note, these are not uncomfortable at the moment). When I first stood with the insoles in I could feel that they were pushing the arch of my foot up, which automatically puts more pressure on the outside of my feet.
As the insoles are making a change to my walking style the advice is to wear them in, starting with wearing them for half an hour on the first day, and then doubling up each day so that I'll be wearing them all the time. We discussed my cycling, and decided that I dont need to wear the insoles when cycling. I'll be getting a review in a few weeks time, and I'll be able to get a second set of insoles then. This will mean that I'll have one set to keep in my work shoes, and another set to wear at home.
Interestingly, I now realise that I dont really wear shoes at home at all, so thats a topic for the review.
I've been trialling this whenever I've been wearing shoes going out, and my feet are getting used to this. Next week I'll move the insoles into my work shoes and more than likely leave them there. I'm able to trim the soft edge of the insoles myself so that they fit whichever shoes I wear, and they are able to refine the shape of the hard bit at the orthotics centre.
What do they look like?
This! Here's a picture (before they get too scruffy in my shoes!). The hard bit has the black base, and the flexible bit at the front has the white base.
Further down the line we might consider AFO's and/or carbon fibre/plastic insoles, depending on how things progress.
A final note on muscles from my first session. Muscles act on points, so you can imagine replacing each muscle with a bit of string and controlled by a puppeteer. The calf muscles attach to outside of the heel, so tight calf muscles raise the outside of the foot. The other thing to remember (and I got this from Physio too) that there are two sets of calf muscles, one which attaches above the knee (the gastrocnemius) and which which attaches below the knee (the soleus). So, if your aim is to stretch your calf muscle you need to do two different stretches, one for each muscle.
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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Thursday, 24 September 2015
Friday, 11 September 2015
2015 Survey open
Update: This 2015 survey is now closed. For details of the results of this survey and any current surveys, please see this page: http://hspjourney.blogspot.co.uk/p/my-on-line-resarch.html
Original Post:
After the success of my previous surveys, I'm continuing the pattern with another survey this year.
My main focus for this survey is understanding the modifications which people make around their homes to live with HSP. I also touch on depression and quality of life.
Following the previous pattern, I will collect results until around the end of the year and analyse these to publish on rare disease day 28th Feb 2016.
Also like before, all questions are optional, and I don't collect any personal info apart from your name. If you took part last time, I'd appreciate using the same name to allow tracking.
I would appreciate any readers with HSP to complete this.
http://www.surveygizmo.com/s3/2310166/d1b822668a8e
Original Post:
After the success of my previous surveys, I'm continuing the pattern with another survey this year.
My main focus for this survey is understanding the modifications which people make around their homes to live with HSP. I also touch on depression and quality of life.
Following the previous pattern, I will collect results until around the end of the year and analyse these to publish on rare disease day 28th Feb 2016.
Also like before, all questions are optional, and I don't collect any personal info apart from your name. If you took part last time, I'd appreciate using the same name to allow tracking.
I would appreciate any readers with HSP to complete this.
http://www.surveygizmo.com/s3/2310166/d1b822668a8e