I realised that its been about 6 months since I last did a symptoms update, so thought that a brief update was in order.
The simple summary of the last 6 months is that there haven't really been any significant changes. If I concentrate then I can walk without scuffing my shoes, but it feels like this is a bit of an effort at times. I still have bowel and bladder urgency issues. I still think I am affected more when I am stressed/tired/drunk.
Thinking about my appointment at the clinic the other week it occurs to me that my rate of shoe wear is directly related to the amount of effort which I put into walking.
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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Tuesday, 27 May 2014
Monday, 19 May 2014
HSP Clinic Visit
The other week I had a lovely day in London with an appointment at the HSP clinic at the National Hospital. It was a sunny day and I spent the morning looking around which was good to do.
An observation on the set-up to my appointment - the initial correspondence after my trip to the doctor had the wrong clinic on it. After some investigation I was in the correct clinic. The clinic code is NW1HH.
I found the clinic very useful, and there are lots of things arranged/suggested to keep me going forwards. The suggestion was that an annual appointment would be useful, but there is the possibility of having that appointment by telephone.
There was, of course, an examination. My leg reflexes are brisk and I'm using the insides and fronts of my feet (more than the outsides and backs).
The most important thing for me is to go and see the physio. I will need a couple of sessions, then get a set of exercises to do which I will need to do daily, and with a follow up appointment after 6 months (at which point I suspect the cycle will repeat). The exercises are all about slowing the trajectory of HSP - I like this language and approach, it acknowledges that this is not a treatment, but can help slow the progression of my loss of mobility down. One of the key measures for this is how quickly I get through/destroy pairs of shoes!
I do not need (yet) any spasticity medication. This will come at a later stage, depending on my rate of progression (which means it depends on if I do follow the daily routine each day).
For me, item number 2 is to look at my bladder. The concept is to get an ultrasound scan of my bladder before and after urinating and look at the volume remaining. Its likely that I'll get a prescription to detrusitol to see if that helps over a few months. It should relieve some of the urgency.
The last suggestion was to see an othotist and get some custom in-soles for my shoes. This would help re-distribute my weight a bit better as well.
We also had a brief chat about my blog and the results of my survey (the HSP Support Group newsletter has recently been published with a summary of some of my findings in it. SPG4 is one of the middle/moderate variations of HSP. SPG11 is more severe and SPGs 3A and 31 more mild. I'll have to check if I have enough data in my survey to attempt this analysis.
One other final point of the day. I spent the train journey looking at abstracts from research papers with a view to getting my research side a bit more up to speed/date. I used some macros to re-combine the text file into some thing a little more useful which saves on one of the major headaches I was dealing with when I last looked at this.
An observation on the set-up to my appointment - the initial correspondence after my trip to the doctor had the wrong clinic on it. After some investigation I was in the correct clinic. The clinic code is NW1HH.
I found the clinic very useful, and there are lots of things arranged/suggested to keep me going forwards. The suggestion was that an annual appointment would be useful, but there is the possibility of having that appointment by telephone.
There was, of course, an examination. My leg reflexes are brisk and I'm using the insides and fronts of my feet (more than the outsides and backs).
The most important thing for me is to go and see the physio. I will need a couple of sessions, then get a set of exercises to do which I will need to do daily, and with a follow up appointment after 6 months (at which point I suspect the cycle will repeat). The exercises are all about slowing the trajectory of HSP - I like this language and approach, it acknowledges that this is not a treatment, but can help slow the progression of my loss of mobility down. One of the key measures for this is how quickly I get through/destroy pairs of shoes!
I do not need (yet) any spasticity medication. This will come at a later stage, depending on my rate of progression (which means it depends on if I do follow the daily routine each day).
For me, item number 2 is to look at my bladder. The concept is to get an ultrasound scan of my bladder before and after urinating and look at the volume remaining. Its likely that I'll get a prescription to detrusitol to see if that helps over a few months. It should relieve some of the urgency.
The last suggestion was to see an othotist and get some custom in-soles for my shoes. This would help re-distribute my weight a bit better as well.
We also had a brief chat about my blog and the results of my survey (the HSP Support Group newsletter has recently been published with a summary of some of my findings in it. SPG4 is one of the middle/moderate variations of HSP. SPG11 is more severe and SPGs 3A and 31 more mild. I'll have to check if I have enough data in my survey to attempt this analysis.
One other final point of the day. I spent the train journey looking at abstracts from research papers with a view to getting my research side a bit more up to speed/date. I used some macros to re-combine the text file into some thing a little more useful which saves on one of the major headaches I was dealing with when I last looked at this.