Tag: Cerebral Palsy

Letting things slip

Yesterday my mum commented that I needed to watch how I was standing when I was in the house and not using my walking frame Martha to help me get around. She said that she was concerned that I was standing slightly more bent over again and that I was starting to put my knees together which is why my knee caps twisted inwards when I was younger and I needed surgery to correct it.

As people who’ve been reading the blog a while will know, I’ve just been discharged from some physiotherapy sessions where I’d been working on learning to ‘stack’ myself properly when I’m using my walker, but when I’m at home I don’t use it around the house. It’s harder for me to pay attention to my posture when I’m in this situation because I tend to just hold myself in whatever way keeps me upright, but this isn’t necessarily the way I should be doing things.

After Mum brought the fact that I should be paying closer attention to the forefront of my mind, I started to notice that my left knee was quite achy, and that it had been for a couple of days, but I’d put this down to the extra long-sitting I’d been doing to give my legs a good stretch out. Then I noticed that she was right and that I was letting my knee twist in because it likes it that way and it’s more comfortable. Opps.

I’m not sure how long I’ve been letting my posture slip back into old habits, but I know it needs to stop ASAP otherwise there’s a risk that things will go back to how they were before my operations, which I know I don’t need to tell you is something that I don’t want to happen.

It’s harder for me to stand up straight when I’m not using Martha because she supports me on both sides and I’m just more aware of these things when I’m using her although I’m not sure why. Maybe it’s because when I’m at home I’m usually concentrating on something else like making a sandwich or getting a cup of tea.

Mum is helping by saying “stand up straight” every time I go past her and I’m trying to think about forcing my knees apart before I do anything else when I’m standing still. It’s a hard habit to break, (or is it a new habit I have to get into?),  but now that my knee is protesting me every step of the way, I’m hoping that the dull ache and a mum’s reminders will help me along the way.

World CP Day

Today, Wednesday October 2, is World CP Day. This is something that I’d never heard of before until my mum  shared something about it on Facebook at the weekend.

Each year they ask people to submit ideas to their website, either through a 60 second video or simply just doing it in writing, of things that could be invented to help people living with Cerebral Palsy and ither disabilities, which I think could also help those who help care for us too. People are then asked to vote on the ideas that they like the most. The ideas will then be reviewed by a panel and shortlisted and inventors and designers then have the option to create a design or prototype for the things that make the shortlist. Applications to create these prototyes or designs opens in January next year.

Even if you don’t want to submit an idea, I thought I’d post a link to their website on the blog today anyway, because I learned quite a lot about my disability through reading the site, and I’ve been  reading some of the ideas that have been submitted by others and I found that quite an interesting experience too.

For more information, please visit the World CP Day website, which also contains an FAQ page containing more information on the process for submitting ideas, and for anyone who wants to submit design and prototype ideas.

Feeling amazed

Over the weekend I came across what I feel has to be the most amazing disabled toilet that I’ve ever seen so I feel that I should tell you all about it.

I’ve known that this said public convenience has been in the shopping centre in question  for a while, but I’d never used it before because it sits next to two others. I’ve always used those instead because this one had the symbol for changing facilities on the door as well, and I don’t need those so I’ve always tried to leave that loo free for people who do.

However this weekend I was out with Rob. We decided to make the most of the nice sunshine and hop on a train for the day. I was in my wheelchair and when the cleaner, who is always really helpful when she spots me mooching around any of the city’s shopping centres, saw him pushing me into others, she asked us to wait while she went and got the key for the other one. She was being nice, and we didn’t want to throw this back in her face, as the saying goes, so we waited.

When we got inside we were both amazed (in a good way) at the quality of facilities inside. The room itself was at least the size of my bedroom at home, if not larger. My bedroom is pretty big, by the way.

There was a hoist too, and a changing table with a moveable folding screen for added privacy, and a large, comfortable-looking chair that could be moved around the room to the place you wanted it.

Oh, and there was also two sinks set at different heights, lots of handrails, two emergency chords that I could count, lots of bins at various heights and loads and loads of toilet roll, which is always nice.

They were lovely and clean too.

This was easily the well-equipped disabled toilet that I’ve personally ever seen. Needless to say I was one impressed lady.

Things I never thought possible

Today I feel like I need some motivation to do my physio and other exercises, so I have decided to try something a little different with this post. I’m going to write a list of some of the things that I’ve managed to achieve so far in life that I used to think I might never be able to do without help, but I can now do thanks to a mixture of getting creative and hard work.

Ready?

  1. Cook Pasta
  2. Take the train on my own
  3. Take the bus on my own
  4. Walk across a coffee table without holding on to anything
  5. Open a pull door by myself while on my walking frame (providing it’s not too heavy)
  6. Being able to do some basic supermarket shopping on my own
  7. Play the Nintendo Wii using both hands
  8. Write shorthand at 70wpm

 

Now here’s another list of things I want to be able do to eventually, again probably through getting creative and even more hard work:

  1. Learn to drive
  2. Go to a music festival
  3. Figure skate (in my wheelchair)
  4. Self propel my wheelchair down a hill and not hurt myself
  5. Be able to change bed sheets
  6. Swim 100 metres (not at professional level, just to be able to do it)
  7. Play an instrument
  8. Live abroad for a bit
  9. Do a master’s degree

 

So, there you have it. I know some of these may only sound small but they make a big difference and give me something to aim for.

What have you managed to achieve that you never thought possible, what are you working towards?

The time my wheel fell off

This morning I was sitting there wondering what I was going to post about today when I got an unexpected text from my boyfriend Rob saying “Hey, you should write a blog about that time I was pushing down that hill in your wheelchair and the wheel came off.”

True story.

Yes, I thought to myself. I should, given that I wasn’t hurt so I can actually have a good giggle about it all now. So, if you’re sitting comfortably, I’ll begin.

 

I’d had the wheelchair in question about a year when it happened. When I’d gone to the appointment to pick it up, I’d been told that, unlike my old one, this posh new one had removable footplates and wheels.  Being able to take the footplates off came in handy for getting it in the car, but I didn’t want to mess around with the wheels if I could help it. I thought that might be tempting fate, so for that year, they stayed firmly in place.

Or so I thought.

Rob is a couple of years older than me so he went to university the year before me, so for the first four years of our relationship we did the long-distance thing. During his first year I was still at home finishing up my A Levels and in the school holidays, my dad agreed to drive me to see him for the weekend and that pick me up again. My dad is pretty awesome like that .

I took my wheelchair  with me because I’d never been to the city that he was living in so I didn’t know how big it was, and this all happened about five years ago when I couldn’t walk as well as I can do now. My hard work over the last few years since my surgery really is paying off, but I digress.

We’d gone out into town. We were going down a fairly small hill when I thought this seems steeper than it did yesterday and I feel a bit wobbly. I wanted to make a joke about his driving skills, but we’d only been together a few months at this point so I thought it might not go down too well.

Then I heard the clunk.

“What was that?” we both asked as I started to tip to one side and thewe noticed my wheel starting to roll away.

Oh. Guess that’s what that noise was then.

Thankfully the runaway wheel came to a stop on its own so we didn’t have to worry about losing it. I didn’t fancy having to explain that one to wheelchair services (or my mum and dad) when I got home. However, I was now teetering on one side with Rob, using all the strength to make sure that I didn’t land flat on the pavement.

We were just wondering how we were going to get ourselves out of this one when a passing couple stopped to see if we needed any help. I don’t think they finished asking the question before I said yes please.

So they helped me undo my seatbelt and get myself out of the slightly unstable chair without hurting myself, then helped keep me upright and get the wheel back on and off we all went again, all unharmed,  with a funny story that we could tell all our friends later.

Oh, and in case you’re wondering, Rob’s quite good at pushing the wheelchair really, I just like to wind him up.