« HSP - Hereditary Spastic Paraplegia »

HSP, also known as Hereditary Spastic Paraparesis

This little nasty is a progressively degenerative neural condition primarily attacking the lowering limbs, but which (can) go on to affect your arms, water works and even the neurones in your brain. No two people are exactly the same, even in twins, making it the devils own job to diagnose, apparently.

To my understanding, HSP is the medical equivalent of a 'widget' or a 'thingummybob'. As a gross generalisation is a 'degenerative neural disorder' and may or may not include several complications. It means the doctors and specialists know and recognise the individual symptoms you have but haven't got a clue what's up with you exactly, as in a precise and definitive label. It's all lumped together.

No two people are the same apparently, even in cases were it runs in the family. Mostly it comes on slowly over a few years and may start in childhood or it might wait till you are old before pouncing.

There again there is evidence it can lay dormant and be triggered by viruses. Triggered being the operative word as its genetic bullet rolls a lifelong illness into a few days. One consultant explained to us the theory that every function in the body has two genes, the second being a backup copy. In some people (like Ryan, perhaps) both are defective, so you are screwed from the start, in others, like me, something - like a viral infection - disables the backup gene.***

Been there, got that!

*** Just an observation and the essense of all real genetic research, but if my DNA was re-written by an illness, perhaps another virus can be created to fix it. Me, I'm crazy enough to think the body should be able to repair itself if you will it enough. Wishing alone won't make it so mind.


Hardly the same fatality rate as 'Motor Neurone Disease' though the two are medically related, I believe. Close enough that my family had to live under the worry that we need to test for MND while they ran me through a battery of tests including lumbar punches, cat scans, EMG's with electric needles and other pleasantries to rule it out.

For us, there is absolutely no family history and, in my case, it took the racers equivalent of 0 to 80 in about 7.6 seconds. Literally, it was like getting hit in the back of the head with a baseball bat and I've never been the same since. With Ryan is has been progressing slowly over the years.

Personally I still think I have a 'thingummy' which has as much to do with a combination of stress, depression, burn out and information overload, plus caffeine poisoning all rolling into 'Yuppy Flu'. May well be that it all triggered the condition, hmmm


In case you are wondering, in Ryan in primarily affect his legs, so his tends to throw himself around to get about, though we suspect half on it isn't strictly necessary with him.

With me it is far more complex and I remain of the opinion it is a combination of things with me and giving me a hard time. Essentially, I have good days and bad days. On a good day I can walk to town and back before I need a good rest (town literally being around a few hundred yards away, as we live central).

I have twitches, spasms and fibrulations most of the time, varying degrees of discomfort extending at times into the realms of smashing my head or preferably fists into the wall to take my mind off the screaming agony in my legs while I wait for the painkillers to knock me out…

Other times I sleep. I don't 'go to sleep' as much as feel funny and lie down until is passes. I have woke up before now to find the children literally using me as a trampoline, the game being to jump up and down on my back until a spasm throws them off. Little monsters! Given I have no control over these lapses I don't leave the house a great deal any more. That said, I live for my books and computers so it's as good an excuse as any.

Funnily enough, though I REALLY miss being able to run, it's the mental side that bothers me the most, though they think this may be related to depression. Notwithstanding I seem to have lost a good 30-40 points off my IQ, my memory is fragged. It's not amnesia, but in the long term there are whole stretches of my life that are blank, missing with just flashes and fragments of memory. In the short term, the goldfish have a better mind. I often struggle to remember minor details like what I am doing, where I am, what the word it for the thingummy you open tins with is - what my name is …

The kids played on this for a while, but it didn't work. You promised, don't you remember…. Given I rarely promise anything and if I'm thinking 'no' now I almost certainly said no last time they asked, so I don't fall for those type of tricks. Nope!

I am still smart enough that I can relearn things daily, but it's irrating to stand or sit staring at nothing, even oblivious to everything around you for a time until Louise or the kids tell me what I am supposed to be doing or thinking of.


Links to follow another day. There are books on the topic, and even help and support groups.

• (HSPinfo.org WAS a brilliant place, but know it's just another portal site for a web company).