During my three months in hospital I had a session each day with the Occupational Therapy Department. These lovely ladies had the job of getting me ready to return home using a wheelchair. This covered a very wide area, from adapting the home, personal hygiene, driving, in fact every daily activity that is needing to be re-learnt. The Physios and OTs work together to adapt a program that prepared me for living outside of the hospital. I called it the time of “Trainer Wheels” as I gained upper body strength and conquered the various activities.
It was very soon decided that our home could not be adapted for a wheelchair, that we would have to sell and find somewhere that was wheelchair friendly, or could be adapted. At the time this seemed like an unmanagable hurdle, very distressing as we loved our home. One OT could see my distress and she just gave me a huge hug while I had a good cry, so much needed, after that she was always ready with a hug or a quiet chat. She gave me the confidence that I could get through this and that life would one day settle down and be ok. I found that during this time I was exhausted but it was explained to me that everything I was doing I had to think about and plan, nothing came naturally, it took both mental and physical energy which left me exhausted.
Temporary accomadation was organised in an apartment owned by my father-in-law. An OT came to visit and see what I needed and how I would manage. It was not ideal but it would be home for the next few months while we found a new place to live. I needed to use a commode as I could not access the toilet (a problem in many homes). To shower I had a bench set up over the bath which I would transfer onto. Furniture and rugs were moved so I could get around, my wheelchair could be no more that 63cms wide as there was an old fashioned lift with a narrow concertina gate. I often feel that life has become an obstacle race with various challenges to overcome!!!!
Once we had a visit to this appartment the OTs set up a plan to work towards my leaving hospital and getting home. A list was made of equipment and skills that I would need to learn, I think the main skill was transfers, which can be done using a Slider Board or pure arm strength. I learnt to transfer from wheelchair to car seat, bed, toilet, shower seat, and armchairs. Some people can transfer from the floor into their wheelchair but I am not strong enough to do this!! Getting into a car I use a slide board, which has a plastic piece that goes over the wheels of the chair so I can slide easier. For the rest I use my arms to push up and across, hence the need to work on upper body strength as this is a skill I use all the time.
I also learnt with an OT how to manage the shower, toilet, dressing, all the things that I took for granted before. Even rolling over in bed is not easy, I have to sit up and move my legs to roll to other side!!! I took my driving test to earn a “Learner Medical licence” as I lost my normal licence and will have to learn to drive a hand control car. So far I have not followed up on this as I am always with someone going out, plus I have a taxi subsidy for a wheelchair taxi. Maybe that will be something for the future when I build more confidence in my abilities.
Everyday with the OTs and Physios I would get out and practice in the wheelchair, gaining strength, getting up ramps, steep slopes and navigating kerbs. I would use an “arm bicycle” each day, plus exercises to keep the wrists and hands strong. It is important to keep a balance, where your arms get stronger, but not overdoing it and damaging the shoulders. My arms are now much more important than they were when I could walk and stand. My final piece of equipment that was suggested by my rehabilitation doctor was a Moto Med, with this I could continue to exercise both my arms and legs at home. http://www.motomed.com/en/models/motomed-viva2.html The Moto Med helps the legs to move around as if cycling, passive exercise, I can do this while still sitting in my wheelchair.. I can also do the same with my arms but do this as an active exercise. It is a great to keep the circulation and muscle strength in my legs.
After three months in hospital I was more than ready to go home but this could only happen when all the boxes were ticked by both the Occupational Therapy department and the Physiotherapy unit. All eqipment had arrived, the apartment was ready, my skills and strength had grown and so with some anxiety I was ready to face life in a wheelchair. I still had much more to learn as everyday brought new challenges. Mentally I still had a long way to go but this is a gradual process of coming to terms with a new way of life. However it felt so good to at last go home armed with my new abilities.
I would like to just add that my reasons for writing this blog is to bring attention to the late stage side effects of radiation after cancer treatment.. Radiation induce lumbar plexopathy… I have already heard from a lady in England who said that she could have writen my story herself, that she has found little help, support or understanding. I hope that others will connect too. I also found a new article that I had not read before that gives some interesting infomation.. http://www.sciencedirect.com/science/article/pii/S0167814012004628
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