My future, is this common?

Up until recently my mobility has been pretty good. I was able to walk quite well, just on tiptoe. Even though I have always tired quite quickly when walking, I’ve always refused to use my wheelchair, unless I’ve been in pain. This is because I didn’t  want to loose my strength, my independent walking and I found wheelchairs ugly and unattractive ( I still do ).

Over the past 9 months, I’ve found my mobility suffer quite a lot  to the point where I can’t walk any distance really without being in agonising pain. I’m falling every 15 to 20 steps and this is continuing to decrease. Just 2 weeks ago, I could do around 50 steps. Stairs are now almost impossible.


I have always been very strict about doing all of my stretches and exercises, but my legs have just become so tight. I don’t understand why this is because I’ve always read that Cerebral Palsy is non progressive. I’m now using a wheelchair constantly, when I’m not at home.

As I just have a manual wheelchair and don’t have much arm strength, I rely on someone pushing me. I feel a bit bad texting my friends to ask if they can push me, especially as it’s a rare thing usually. Although at the moment it’s different, because it’s very unlikely that I’m ever going to get back out of it now. However my friends  are always  happy to push me and always look for accessible places to go.  They are so supportive and will help me out with absolutely anything, even my personal care.

I do feel lazy and guilty for asking my friends to push me, but I just can’t afford a powered chair at the moment. As I’m not really expecting to improve and my current wheelchair is not comfortable at all and isn’t giving me any independence, I’m going to try and save up for an electric wheelchair. I need one that is comfortable, foldable, lightweight and hopefully more attractive. My physiotherapist has told me, I’m likely going to need aid to walk by November  and probably not be able to walk at all by Easter . Although at the rate I’m currently declining, I think I’ll be off my feet by January. This was quite a shock to me. Taking this into consideration,  I need to make sure it’s fit for my needs of today and of the scary future. The only issue is, I doubt I’ll be able to have saved up enough money by the time I’m completely off my feet.

The NHS are refusing to provide me with a chair, despite my private physio telling them what my prognosis is.

I have heard that many adults with CP get worse, but I didn’t realise that I could loose my mobility altogether. And I also didn’t realise it could happen at my young age ( I’m 21 in December). My physio routine is becoming pretty uncomfortable and less affective. Stretching my muscles is now impossible, I have no range of movement and Botox has failed to work. 

One of my main wants in life, is to have children, but this now is highly unlikely. I am just utterly heartbroken. I don’t know if this is normal to be expected to deteriorate so much. 

My life is getting so much more expensive, I’m going to need to move house soon. I now require an accessible bathroom with rails and a walk in shower with a seat. I’m going to require ramps, downstairs bedroom, en suite accessible bathroom, wheelchair van. 

How will my family afford this?

I’ve always felt quite privileged that my mobility has been amazing because that can’t be said about my fine motor skills. And I knew that most people with CP struggle far more than I did with walking. But I’m quickly losing it. Having 4 surgeries in the past now feels like there was never any point going through them, but that’s the past.

I’ll post something more positive tomorrow.

Please comment if you or anybody you know with CP, are in a similar position.