At the start if this year I spent three months in hospital and most of this time was spent in the Neurological Gym, under the care of a specialist neurological Physiotherapist. Unlike other gyms a neuro gym has less equipment and lots of raised beds. They have lifting equipment to help with those who cannot manage. There are weights to use from a wheelchair plus hand weights and bars for support to exercise. There are machines to exercise the legs by pushing against a resistant platform. There are games which seem quite simple, but when you have no co-ordination they are very hard. One of the main exercises was sit to stand, I never realized how much we use this in life until one cannot do it! Sitting standing exercise for me was like a nightmare, it was the strangest feeling to try to push with your legs and get nowhere!! There was a competition to see who could do the most as they got stronger, sadly I never got to do this competition!!! Unlike other gyms the neuro gym is designed to “reboot” the nervous system which has been damaged by an accident, stroke, surgery, tumours etc.
The exercises appear very simple but when the message does not come from the brain to tell the limb what to do they are so very, very hard. You try both physically and mentally to get your body to do what you want it to do, but nothing, or very little happens. It is very confronting when you try to stand at a table and pile cones on each other but your legs won’t hold you, you have no balance and the cones fall over as you try to reach across the table, or you try to walk with a walker and your legs are like spaghetti, it is harder than any normal Boot Camp!! It is mentally and physically exhausting. fortunately all the Physiotherapists and the aides are very caring and quite used to a few tears of frustration and disappointment.
When I first arrived at the gym the plan was to improve my walking. The RILP (Radiation Induced Lumbar Plexopathy) is so rare that no one knew how it would progress. Would I get worse or better? Would intensive physio stop the progress? The answer to this in the end was that it would not stop the progress. Each day they would time my walks and how far I could get but my results got worse until I dreaded this part of the day.
Eventually the day came when my legs stopped working altogether. I was sitting in my room and wanted to stand but I could not, nothing, no response, it was the moment I knew was coming and in some small way it was almost a relief. I no longer had to struggle to walk. I called the nurse who was a bit confused as to why I could not stand!! Having a very unusual problem does not help as no one understands. Even my rehabilitation doctor had never seen this before and did not know what to expect. So from then on a wheelchair became my legs, my physio program changed to an intensive building up of my upper body. I arrived in the gym that first morning of being paralysed and of course started to cry but they were so kind, we now had a new project, to gain my independence on wheels and so started “Boot Camp on Wheels.”
fortunately I have always been a fit person but not so much my upper body. This was hard work but I felt I had a goal, to get home, to get to the toilet independently, to shower and dress myself. The stronger I got I could do these things myself. We used a lot of weights, hand-held and pullies, I lifted myself up using handles, holding my own body weight up. We wheeled round the grounds of the hospital, up and down hills up steep ramps. It felt a bit like Rockie the first time I got all the way up one of the steep ramps.. I can do this, I am getting muscles in my arms, I am getting stronger. They worked me very very hard each day. I had a one on one session and then a group session and then a session in the Exercise Physiology Gym. This was for extra weight training and to maintain the muscles in my legs to improve circulation and to help my Lymphedema (the lymphatics work by movement) this is a problem with paralysed legs!!!
In all of this I was getting physically fitter but the mental side would take a lot longer. I was truly on an emotional rollercoaster at this time, more on that in another post…
During my time in the Neuro Gym I saw some amazing recoveries, I saw the incredible work that the physios did to get people walking again after strokes and brain tumours. New patients would arrive in a really bad state and over the weeks they would get stronger and stronger, their legs and arms would start to work and they would walk again or use their arms again. This was fantastic to see though it did make me wonder why I could not do this. I also saw some very sad cases where spinal injuries or strokes had caused patients to lose the use if arms and legs but the physios worked hard to get them to the best that they could be, though they would always need carers it was important to keep the body moving in some way. Passive exercise is just as important, as that you do yourself, as it still helps circulation etc.
I also was not the only patient having problems from the side effects of cancer treatment. While at the gym I met two ladies who were paraplegic, like me, post cancer treatment but for different reasons. One lady had leukemia and her chemotherapy had caused paralysis. She was very sick when she arrived and unable ro move but they worked hard with her till she could wheel herself in her chair, she enjoyed getting herself to the cafe for an ice-cream. Having some independence is so important. The second lady was paralysed from the waist down but like me arrived still able to walk with those spaghetti legs. Sadly she too lost the use of her legs which was caused by radiation to her spine for metastatic Breast Cancer. These are side effects of cancer treatment that we are never told about, even though they exist, would we have made the same choices if we knew??? Probably we would, as they are so rare, you think it cannot happen to you. I feel had I known of the possibility my diagnosis would not have been so difficult and maybe it could have been picked up much earlier. My rehabilitation doctor showed my radiation protocol to a radiation oncologist and he said, “I have never seen it, it is not possible!” Imagine as a patient with a rare disorder being told this. Although my rehab doctor had seen brachial Plexopathy in women treated for Breast Cancer she had never seen it from pelvic radiation, although I think by the end of my hospital stay, watching what happened to me, she at last understood the diagnosis. When I left hospital she gave me a big hug, I think she was very sad that there was nothing they could do to help me walk again. Hopefully if she ever has another patient like me she will have a better understanding. I hope too that this blog will educate people on the late stage side effects of cancer treatment which I believe we will see more of as survival rates improve.
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