Some more about standing and the long awaited video - Yipee!

It's been a while since I've written about my standing using the new Levo C3 stand up powered wheelchair, and at the end of last week I finally managed to get a video of me using it, so I thought I'd update you on how things are going.

 

Remarkably it's now 7 weeks today, since I took delivery of the wheelchair, and I really feel that I'm starting to make good progress and feeling the benefit of using it almost every day.

 

Levo C3 Stand Up Wheelchair - sitting

 

Levo C3 Stand Up Wheelchair - standing

 



Unless I am going out, when I use my Viper S powered wheelchair, I get my carer to assist me getting into the Levo wheelchair, after I have got up, showered, and dressed in the morning.  I then have breakfast, after which Mum helps me by putting on my trainers - which give me good support in my ankles and heels as I stand - and the puts in place the knee/leg supports and then puts the chest strap round me.

Viper S Powered Wheelchair

 



I then go and stand looking out the front window, watching the world go by.  I am usually standing somewhere between 10 and 15 minutes, but on a very good day I have stood for as long as 20 minutes.  It isn't actually hard work, standing in the chair.  I had expected that it would be hard on the muscles in the legs and that these would hurt, but actually this isn't the case.  When I first started standing the legs did feel weak and after 10 minutes standing, would feel a bit shaky, but this has now gone.

 

What actually limits the amount of time I can stand is the discomfort in the soles of my feet.  I wasn't expecting that, but suspect that not having stood for 5 years, the soles of my feet need toughening up to get them used to having weight put through them.

 

After having stood, I then tend to transfer back to my Viper S wheelchair, as this is more comfortable to sit in - or I'm more used to this chair and it feels more comfortable - and it is easier to manoeuvre round the house.

 

You might be wondering if its worth having if I'm only using for this short time every day. 

 

As I can build up more tolerance to standing, I will be able to stand for longer, and eventually if I can get to a point where I can do a couple of stands of reasonable length, each morning, that will have even more benefit.

 

Below is a video of me standing using the Levo C3 stand up powered wheelchair.  Sorry that the lighting isn't the best, and the cupboard behind me doesn't allow you the best view of the chair actually raising up and down, but hopefully you'll get a good idea of how it works.

 

I have also muted the background noise - as the washing machine had just reached it's spin cycle and all you could hear was this whizzing round - and have therefore put on a song by Saint Etienne - Who Do You Think You Are - which I hope you'll enjoy.

 

 



You will note that when I am standing I am not getting up completely straight.  Part of this is to ease the pressure on my feet, and therefore extend the length of time I am standing.  Also I need to stretch the tendons in my legs to get them used to standing straighter - which is something they won't be used to from all the sitting down in the wheelchair.  I try to get a little straighter each time I stand.

 

The final reason is one of confidence.  As I get more upright, I feel as if I am on the edge of tipping forward.  Although I have the chest strap which will prevent this from happening, and that the chair itself is extremely stable, I still need to build up my confidence in this regard.  I'm sure you'll appreciate that tipping over feeling, and wanting to avoid doing something that might end in setting back my progress.

 

So what benefits have I found from standing?

 

Even in the relatively short time I've had the stand up wheelchair, I've started to notice little benefits.

 

I've written previously about being able to see the world from a different perspective, literally, and the difference that this can make.  Just simply the joy of being able to stand, is a real tangible benefit after having spent 5 years sat down.

 

Physically, I can see a difference in my legs.  They aren't swelling up as much as they used to and the skin on my legs appears to be in slightly better condition.  I've even got hairs growing back on my lower legs - which might not sound like much - but that's quite a big thing.

 

I am also feeling a bit of an improvement in my core strength - which is one of the areas that is really hard to achieve any improvement.  We are only talking about a very small improvement to my stability when I am sitting on the side of the bed first thing in the morning, but its definitely an improvement.

 

One of the issues many wheelchair users find is that their bowel movements become very irregular and constipation is often a big problem.  Although I would say that this has never been a great problem for me, there has definitely been an improvement in this direction.

 

Also it has helped to lessen the occurrence of sores on my bottom.

 

But the most noticeable benefit has been with my toes and feet.  I have Raynaud's and have always suffered with cold hands and feet.  Since being in the wheelchair, my feet have almost constantly been cold, and the changes in skin colour had become quite pronounced.  Earlier this year a friends wife was shocked to see that I had purple toes - and even more shocked when I laughed it off as being normal for me.

 

Well over the last few weeks I've really noticed that these changes in skin colour have almost completely disappeared.  I won't say my feet aren't cold but they certainly aren't as cold as they were before I started standing.

 

So that's where I am currently with standing and using my new chair.  It was quite a lot of money, but it was worth it, and I can see that the more I can use it the better the benefits will feel.

 

I'd just like to finish this blog by saying a thank you.  It was in December of last year that I saw Liz Dewar, one of the senior Physiotherapists at the National Hospital for Neurology and Neurosurgery, in Queens Square, London, during an appointment at one of the IBM research clinics.  She saw the potential benefits to me and offered me the opportunity to attend appointments with her team to explore the options to getting me standing.  After almost 4 years of being told I couldn't stand it was a breath of fresh air.

 

Liz and her team, where brilliant.  Patient, encouraging and supportive, they deserve a great deal of credit for giving me the opportunity, and for working so hard to help me achieve my goal of standing.

 

Thank you to them all!