Sunday, February 27, 2011
When I meet him two weeks ago he had a hard time sitting up straight as his core was very weak. This is why his parents decided to hire me in the first place. They explained to me that he had extensive physiotherapy since the operation and that the therapist was working on walking. In fact she tried to have him walking with his legs in perfect alignment with the help of equipment and facilitation. The parents were told that they should avoid walking until he mastered this skill. In order to support his progress, they carried him. His way of moving around was someone carrying him, which meant he had no idea how to problem solve involving his body. Further this meant he had little opportunity to get to know his new body, as it now reacts in very different way then before the operation.
Consequently he had little confidence using his body and was very scared standing on his legs. We tried a couple of steps and he looked and felt more stronger then I expected. However he needed a lot of physical support because he tended to collapsed ( a common side effect of SDR) and felt very insecure about it. He also crossed his feet a lot, which made him collapse even more.
I talked with the parents about that the skills of sitting and walking as well as problem-solving, self-esteem and confidence are very much interlink and that to get the one stronger the other need to be worked on. We also talked about that its important for their and their childs physical and emotional health to stop carrying him. And that walking in perfect alignment is also my goal but that I think he needs the chance to learn to fix his feet so he does not panic in case they do cross.
I explained to them that all rehabilitation processes I have been involved in with children who had the SDR done, it was vital that they stood on their legs as often as they could to build up strength and stamina. They told me they would like to do more with him but its hard with four other children in the house, they simply have no time.. I discussed that it is important for him to be able to move more as part of his daily routine as this is more important then exercising. So instead of carrying they should walk with him, for the short distances in the house.When he has to sit himself up on the sofa I showed him how to help him, so he can get stronger and eventually do it himself. Instead of lifting him up they should help to stand up so he has an active part in it. The family has been involved with CE before my time and it made straight away sense to them.
I suggested to get their physiotherapist to contact me so we could discuss if keeping him of his feet was really necessary for his rehabilitation. A couple of days later I had a very nice email exchange with that Physiotherapist and she was very open to my suggestions. In fact she thought they were are good ideas and she agreed with everything I said (that was definitely very refreshing to the usual professional encounters I had). So, the family stopped carrying him and felt less torn between two professional opinions. I worked with him for a bit to build up his confidence as well as getting to know his body. We explored what he could do and how to move his legs in different positions. While we were playing games he was building up his strength. We practiced to reach in and out of his gravity point. He was scared to try and I ensured him he could do it and I would be there if something goes wrong, so he was safe to try. That helped him to get over his fear. Within a short time he was able to do more and more. And with everything new he could do, his confidence level rose.
During our last session he was able to take 44 steps with his rolator with me having my hands on his hips in case he collapsed. We learned that the only times he did collapse was when his feet weren’t in alignment or he stepped on his toes. With me giving him some small verbal guidance from time to time he could fix his feet position by himself. I shared this with his parents and recommended that they start using his rolator to walk short distances.
I think the important changes that happened were that he and his family had more confidence to try and stopped being scared of moving around. It’s going to be very exciting to watch where he goes from here.
Thursday, February 24, 2011
Today is the second annual CE awareness day in North America support by ACENA. I hope it is going to be a good one for CE.
ACENA’s goal was to put out one common message about CE across North America. I love this idea and the templates showed that a lot of thought and work went into those. However, I did have to take out some of the brain stuff to stay true to myself. I always have been or at least tried to be a do-as-you-preach-kind-of-person. So I guess the message was more common-ish: that CE needs more awareness and support in order to help more children and adults with movement disorders and their families.
So I tried my part to raise more awareness of CE in BC for that day. I modified the ACENA newspaper template and send it out to a couple of newspapers, TV and radio stations as well as passing on a few flyers to local schools. So far I haven’t heard anything back and I am not too surprised about it either. Making contact with the press takes time and perseverance. Someone told me last weekend its important to keep sending those information so they become more aware of you and one day it might just work out.
ACENA was encouraging to send it out to your local government to get more support from this side. Unfortunately I joined ACENA too late this year to make that happen. Next year might be a complete different story.
It’s also pretty hard with having no consistent group running at the moment. So open houses are out of the question. But with spring camp approaching quickly, we might be able to arrange something.
It has been a learning curve putting those things together too. I guess it is not quite your usual conductor stuff to put out press releases or at least it has never been for me. I feel more confident to do this at a quicker pace the next time it comes around.
I guess raising awareness of CE is a one-step at the time process and I learned to accept that I have time to make this happen slowly out here. In fact a lot of people out here have encouraged me that good things take time and the quick fixes usually don’t last. As I am not going anywhere, I have the time to see it grow. Quite a conductive process in itself.
Thursday, February 17, 2011
My stroke clients’ learning is coming along in leaps and bounds. We have been exploring movement of the affected side. When we started he had little active movement in his arms and little to none in his fingers. The first time I asked him to move his arm, he tried so hard that it looked like his head nearly popped into a million pieces, but there was no real movement in his arm.
From there we worked on me holding his arm where he could actively move it (this helps to show progress and create motivation to try) while trying to breath and relax in between. He could move it more and more. A couple of weeks later he told me about this jerking movement his arm does. He was not sure what it was. It turned out to be real active movements of his arm that he could control. This movement in his arm did not look like his movements used to but that didn’t make them less real. It made it a start of a learning curve because now we can be working on controlling this movement so it becomes smoother and more controlled.
We also worked on him regaining some movements in his fingers. He said that he had some movements during his intensive rehabilitation after the stroke but that after a while he lost it and so they worked on different aims. His fingers are naturally open and he has a hard time trying to squeeze them together to hold onto things. We worked on holding onto a piece of doweling and to lift it using the strength of both arms. While doing this I could observe that when he extended his arms that his fingers would squeeze more together. But when trying to consciously squeezing his fingers it wouldn’t work. Through my observation I knew it was possible, now my client had to figure out how to access this movement.
We elevated his arm in this position he can relax (not using any muscle) so his fingers would stay open to grab objects. I then ask him to squeeze his fingers and he tried. He kept staring at his fingers but nothing happened. I could see him getting frustrated. I told him that the movement in his fingers most likely wont come from there and he should try to squeeze with something else like his shoulder or bicep. And then it happened. His fingers close. He repeated that movement a couple of times and later his wife would tell me it was like magic.
No magic – it’s more likely he made connections. With riding the brainwave I could say that his brain created some new pathways, but realistically I don’t know what exactly went on in his brain. What I do know is that my client is learning more and more that he still has active movements on his effective side, however they do not feel or being controlled the same way. It will time to learn how to control that but the important part is that he learned it’s possible.