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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Monday, 24 December 2012
Review of 2012
Christmas is coming round again, and I thought I'd just review and summarise what I've discovered this year, and think about how different my symptoms are since the start of the year.
Knowledge:
The main knowledge change this year is the discovery of the PubMed database and the wealth of information out there. I'm starting to digest this information (so there'll be no shortage of bits of info to post about!)
Symptoms:
My main observation this year is that I've spotted wear and tear on my shoes and in the car, so even if I didn't perceive it my symptoms must be getting slightly worse. I've also had the odd comment about 'limping'. I've also found that I need to keep exercising in order to keep my flexibility for a long as possible.
This Blog:
This year I've added an index and started to develop the blog so it's more than a list of posts. I've also started to become an "active" writer than a "passive" one, and I've joined various HSP communities. In the last month or so I've also started tweeting, and I think that 2013 will be the year where I join up my various on-line presences together.
The filming project:
In July 2011 I started my 'filming' project. I paused from that when our second son arrived, after about a years worth of footage. It is my intention to re-commence that project in 2013 as well.
Monday, 10 December 2012
The need to urinate (go to the loo)
Part of my digest of papers found a fairly recent one on the bladder side of the symptoms, and is my first look into this side of things.
Title: Bladder dysfunction in hereditary spastic paraplegia: a clinical and urodynamic evaluation
Authors: M Fourtassi, S Jacquin-Courtois, M C Scheiber-Nogueira, A Hajjioui, J Luaute, K Charvier, D Maucort-Boulch and G Rode
I've only read the abstract so far, but the principal findings appear to be: a large series (29) of HSP patients were analysed. Ultrasound examination revealed no upper urinary tract complications.
This abstract gets quite "heavy" in its terms - so I've tried to find out what all of these mean, and I've described them below. My take on the paper is that more than 80% of HSP patients have some kind of urinary symptoms, the most common of which is "urgency" - a sudden need to wee.
In order to allow a bit of self-diagnosis I tried to find out what is "normal". The bladder normally holds 400-600ml although the urge to urinate is usually felt at about 150 ml. Most people go to the toilet four to eight times a day. Most people can sleep for 6 to 8 hours without having to urinate.
It would seem that bladder problems normally increase with age. Middle aged and older men often wake to urinate once in the early morning hours. Up to 35% of the female population over the age of 60 years is estimated to be incontinent. 17% percent of men over age 60 experience urinary incontinence, with this percentage increasing with age.
My attempt at describing the terms used:
Detrusor - The bladder muscle
Urination is also known as micturition, voiding, peeing, weeing
Urinary urgency - is a sudden, compelling urge to urinate.
Urinary frequency - the need to urinate more often than usual
Nocturia - the need to get up in the night to urinate
Urinary incontinence - any involuntary leakage of urine
Urinary hesitancy - a delay between trying to urinate and the flow actually beginning
Neurogenic bladder - dysfunction of the bladder due to disease of the nervous system or nerves
Detrusor overactivity - when the bladder muscle contracts unexpectedly during bladder filling
Detrusor sphincter dysynergia - instead of the urethral sphincter muscle relaxing completely during voiding it contracts causing the flow to be interrupted and the bladder pressure to rise
Post-void residual - the amount of urine retained in the bladder after urination.
As usual, most of my facts are courtesy of Wikipedia with a few other medical sites thrown in for good measure. Having written this I'm reminded of the two Ronnies I want to go to the lavatory sketch about going to the loo with the various smallest room, spend a penny references.... http://www.youtube.com/watch?v=HaGVQqVCJr4
Title: Bladder dysfunction in hereditary spastic paraplegia: a clinical and urodynamic evaluation
Authors: M Fourtassi, S Jacquin-Courtois, M C Scheiber-Nogueira, A Hajjioui, J Luaute, K Charvier, D Maucort-Boulch and G Rode
Published in: Spinal Chord, Volume 50, Issue 7 (July 2012)
The link is here:http://www.nature.com/sc/journal/v50/n7/abs/sc2011193a.html.I've only read the abstract so far, but the principal findings appear to be: a large series (29) of HSP patients were analysed. Ultrasound examination revealed no upper urinary tract complications.
| Symptom | Pecentage | Patients |
| Urinary urgency | 72.4% | 21 |
| Urinary frequency | 65.5% | 19 |
| Urinary incontinence | 55.2% | 16 |
| Urinary hesitancy | 51.7% | 15 |
| Neurogenic bladder | 82.7% | 24 |
| Detrusor overactivity | 51.7% | 15 |
| Detrusor sphincter dysynergia | 65.5% | 19 |
| Post-void residual >10% of voided volume | 41.4% | 12 |
This abstract gets quite "heavy" in its terms - so I've tried to find out what all of these mean, and I've described them below. My take on the paper is that more than 80% of HSP patients have some kind of urinary symptoms, the most common of which is "urgency" - a sudden need to wee.
In order to allow a bit of self-diagnosis I tried to find out what is "normal". The bladder normally holds 400-600ml although the urge to urinate is usually felt at about 150 ml. Most people go to the toilet four to eight times a day. Most people can sleep for 6 to 8 hours without having to urinate.
It would seem that bladder problems normally increase with age. Middle aged and older men often wake to urinate once in the early morning hours. Up to 35% of the female population over the age of 60 years is estimated to be incontinent. 17% percent of men over age 60 experience urinary incontinence, with this percentage increasing with age.
My attempt at describing the terms used:
Detrusor - The bladder muscle
Urination is also known as micturition, voiding, peeing, weeing
Urinary urgency - is a sudden, compelling urge to urinate.
Urinary frequency - the need to urinate more often than usual
Nocturia - the need to get up in the night to urinate
Urinary incontinence - any involuntary leakage of urine
Urinary hesitancy - a delay between trying to urinate and the flow actually beginning
Neurogenic bladder - dysfunction of the bladder due to disease of the nervous system or nerves
Detrusor overactivity - when the bladder muscle contracts unexpectedly during bladder filling
Detrusor sphincter dysynergia - instead of the urethral sphincter muscle relaxing completely during voiding it contracts causing the flow to be interrupted and the bladder pressure to rise
Post-void residual - the amount of urine retained in the bladder after urination.
As usual, most of my facts are courtesy of Wikipedia with a few other medical sites thrown in for good measure. Having written this I'm reminded of the two Ronnies I want to go to the lavatory sketch about going to the loo with the various smallest room, spend a penny references.... http://www.youtube.com/watch?v=HaGVQqVCJr4