So lovely to meet you the other week, you are so inspirational its unreal and really gave me the motivation I no longer feel from my community rehab. You will be pleased to know I am no longer getting an electric wheelchair and fully regret letting my occupational therapist talk me into it and am instead applying for funding for a saeboflex to help with my hand, which i think will be a much more positive investment.
I have been keeping my splint off in the house (i still feel quite vulnerable leaving the house without my splint & walking frame but i’m hoping to try this soon!) and have found that I have a tiny bit of movement in my ankle now! My tone is much lower in my arm thanks to your strengthening exercises and stretches and I find the exercises you showed me much more exciting than the ones I had previously! I have also been walking much further than before (i can get to the beach from my house and further!!) so I just wanted to say thank you for giving my attitude an extra push. Your book is absolutely addictive and I have learnt so much from it.
I have written you something to put on your website to help others see what’s going on at ARNI: if its too long feel free to delete wherever you feel appropriate.
I was shown the Arni website by a member of Different Strokes when I was going through a tough time with my community rehab team and was worried their treatment was no longer suitable for me. Things with my community team picked up but the closer the discharge date came the more I wanted to look into seeing a trainer from the trust. My parents organised for me to attend a day training with Tom, I was very nervous to start with, having seen the website I knew he aspired to get people out of their wheelchairs and onto their feet.
My Stroke was only at the end of Feb and at the age of 21, I was already more than happy to be out of my wheelchair, I knew my walking frame and walking stick was a no-go for seeing Tom which I felt confident about, though I still foolishly took my stick and was asked not to use it petty much straight away, again something I was fine with but what I was worried about was being asked to walk without my leg splint. Although it was something I was desperate to get rid of it was truly embedded in my comfort zone, mostly down to the fact that I was told I wouldn’t be without the splint until at the earliest January 2012.
Arriving at the ARNI trust I walked from the car to the door using my stick and wearing my splint, getting through the door Tom asked me to not use my stick which I happily did. It has been clear for a while that I don’t need it often walking across the room and realising I’ve forgotten something.
The first part of the day we talked about my experience, assessing what abilities I had and discussing how important it is to be positive. Tom also kindly shared his experiences with me, making me feel very comfortable and motivated to try anything he threw at me. Beginning the physical training still wearing my splint we began exercises. having a break Tom asked if I would like to take my splint off, nervous I knew he wouldn’t ask me to do anything he didn’t think I could do so I removed my splint already knowing I could stand without it. He then asked me to walk around a square mat, i slowly made my way around it surprised that I didn’t fall flat on my face.
I then continued for the rest of the afternoon without it, being shown how to get on and off the floor, walk and turn, move out of peoples way if they were walking into me without realising I couldn’t move out of the way well, balancing on each leg and even kicking out to the side. I also learned how to do warming up and about cardio. These exercises kept me much more entertained than the ones I have been doing since leaving hospital as they felt more like a work out and the best thing was I wasn’t wearing my splint. Throughout the day Tom introduced me to different approaches to therapy, different equipment, a new confidence, and offered me to buy a copy of his unpublished book “the successful stroke survivor” which of course I did.
I left the building with my mum carrying my splint and my Dad carrying my walking stick and my god did it feel AMAZING! I now no longer use my splint or walking stick around the house and begrudgingly put it back on when I walk outside because I haven’t quite plucked up the courage to walk outside without it or my walking frame something that thanks to ARNI’s positive attitude I know won’t be far away.
As for the book I am about a quarter of the way through it making notes as I go. I feel like I’m studying and I guess in a way I am, It has helped me to understand how stroke recovery works and why different therapies help with it. It keeps me motivated even after the shortest skim over the parts I have highlighted and helps me understand why ARNI’s approach is so special, teaching you to train and strengthen your whole body not just the side affected by stroke. It also helps diminish many of the worries I had about the way I am recovering learning that ‘compensatoriy stratergies’ dont have to be a negative thing and can be worked with to increase strength in muscles. I also learnt that despite what I had been told, hard work doesn’t mean increased muscle tone, and even after my full day with ARNI, spending hours exercising out of my splint my usually high tone was relatively relaxed.
I would definitely recommend the book and ARNI way of thinking to any stroke survivor no matter what stage of recovery you might be at. I’m sure you will find something useful from it that I have not yet found anywhere else, be it that extra push to get you out of your wheelchair, the confidence to push yourself as far as you can go or the information about equipment you never knew existed. If it wasn’t for visiting ARNI there’s no doubt that I would still be putting my splint on every time I wanted to walk across a room.
Becki has an excellent blog which can be accessed here.