Spasticity and Splints - Part 16: Heeling, Adapting and Learning New Patterns

As I’ve said, I fix my arms when I am doing things with other parts of my body. I sit in the “W” position sometimes at home. This is where your knees are bent with your feet on either side of your bum. Most physiotherapists I’ve seen have tried to discourage me from sitting in the W position because it’s bad for my hips, but most haven’t seemed to realise that I cannot keep myself sitting upright without something behind me unless I sit in this position. When I eat or brush my teeth, I sit in the W position and hold my arms between my legs to keep still.

When I had the cast and sling on, I couldn’t hold my arm down, so that made it difficult to keep still. I just had to put up with my arm moving when I ate because it didn’t affect me that much, but drinking and brushing my teeth were a different story… My carer had to hold my right arm so that it didn’t try to do a dab motion in the sling.

There is a UK charity called Remap that has numerous volunteers based all around the country, who create bespoke equipment for people with disabilities. You can make a referral to Remap on their website and I believe that you can also phone them too. When you put in a referral to Remap, they look at where you are located, and a local volunteer will come out to see exactly what is needed, and then do their best to design and make it for you.

I’ve had two pieces of equipment made by two amazing volunteers from Remap. One is a bottle holder to enable me to drink from my water bottle independently. When I had my arm in the sling, I found it awkward to get my arm out of the way of the holder to have a drink. I had to turn to the side to avoid knocking my hand.

When I finished using the sling at home, I tried to hold my arm between my legs to stabilise myself and stop it moving, but that didn’t work as expected… As I had blisters on my finger, it was very sore to put any pressure on it, therefore I couldn’t put my hand between my legs to hold my arm still. Even resting my hand on my knees brought tears to my eyes in the beginning.

Sometimes, when I had my Botox injections for my hand, I couldn’t control my arm movements to get my arm in-between my legs until my body got used to the new pattern with the Botox. I think that’s what is happening with my arm at the moment. It has got easier to hold it as time’s gone on, so I’m hoping that it will improve further.

After my fingers had healed a bit, crawling around the floor has been much easier too. I can now put my hand on the floor, and it’s pretty much flat, whereas before, my hand would be held in a fist all the time. At first, it felt like the muscles or tendons were pulling when I put my hand flat on the floor but that is improving as well.

The consultant is keen for me to be able to use my hand, so I have been practising picking up a ball and transferring it to different-sized objects to help me learn how to use my hand. I still can’t bend my fingers on my own all the time at the moment but I started trying to pick things up with it around 13 November, and depending on my involuntary movements, I can sometimes hold a small ball with my palm and thumb and place it in circular objects like a roll of Sellotape, a bit like a crab does with its pincers. I know this sounds like a small thing to some but this is a huge achievement for me.

This is much more than I thought I would be able to do, so I am chuffed with it!

As time went on, I got more movement in my fingers, which is brilliant. I have also found that my involuntary movements in that arm have been going wild… Sometimes I can’t hold my arm in between my legs at all. This has really affected my stability and ability to hold my body still when I eat and do other tasks.

On 18 December, I saw the Nero physiotherapist at QA Hospital. I was quite nervous about this appointment because I thought that the consultant wanted me to be able to use my right hand to do every-day things, like I do with my left hand. I misunderstood the whole meaning of the word “use”. I asked the physio’s opinion, and she confirmed that all that meant was they hope that I would be able to use it to move around the floor easier, which I am. I also asked her about the increase in my involuntary movements, and she confirmed that it was just my brain learning new pathways. I would describe it as my brain going “what the f***? What do I do with this?” This was a huge relief for me for two reasons: Having your arm wave around like a madman whenever you do something is very annoying for me, and the people helping, plus it is extremely tiring physically and mentally.