Spastic.

Can you call someone a spastic? Probably not. Can you call yourself a spastic? Most definitely. Well, I’m a spastic! 🙂

I have a condition called hereditary spastic paraplegia (HSP). It affects the lower half of the body, causing the legs to gradually get weaker and stiffer over time. In my experience, I’ve found my balance is worse and walking is tougher than it was when I was a child. I’ve probably always displayed symptoms of the disorder through childhood, but the symptoms have just become more profound over time.

So, what’s it like living with HSP? It really does depend on your outlook. People with HSP are all at different stages and the disorder will be progressing at different rates. Unfortunately, there are no treatments at the moment which can reverse the disorder. Therefore, treatment is focused around managing one’s symptoms. These treatments can range from seeing a physio to discuss an exercise and stretching plan, to taking muscle relaxants to help with stiffness in the legs, to injecting Botox to the stiff areas.

For a long time after being told by the doctor this is something I probably have, I was a victim. I thought everyone else I knew who could walk without thinking, or stand on one leg with no problem, or stand for long periods of time all had it so easy. Of course, it wasn’t there fault I had difficulties doing this things. The mentality I had definitely didn’t help me.

Also, during the time I found out I had HSP, I was in a very anxious and depressed state. I used HSP as an excuse not to leave the house, which (obviously now) didn’t help my mental health symptoms or my HSP symptoms. It’s easier for me to say now, but leaving the house is huge. If you can, always leave the house. It will help.

So what helps my HSP? Moving! HSP is a neurological condition so I believe (not a doctor) that keeping the neurological pathways between my brain and legs working is important. When I wasn’t as active, my symptoms were definitely worse. My legs were tighter, I suffered from more pronounced clonus (involuntary muscle contractions and relaxations, causing a shaking sensation) and when I tried to walk, it was harder.

Since February, (when I began playing Pokemon Go!) I’ve been going on daily walks. I used to tell myself I couldn’t walk long distances because it was too hard and my legs shook too much. Well, it’s amazing what the body can actually do. I now try to do at least 6000 steps a day, which is surprisingly easy for me now (I’m averaging 10,000 steps a day for June atm!).

What does the future look like with HSP? Well, there’s no cure at the moment, but DNA science is always progressing. It’ll probably involve me losing all dexterity in my legs, and needing a wheelchair. But at the moment, I’m focusing on moving and I’m not going to stop just yet.

There’s plenty of ramps around for the disableds these days anyway…     

See you later.