Today I am taking a moment to say good bye to one of the passions of my life; movement, especially movement to music. There is no denying that it was once an important part of my life and the joy that I got from dancing, stepping and aerobics etc, can probably only be fully understood by fellow dance enthusiasts. All of them obsessive by nature – or how else could you explain the many hours of repetition, even through pain!
Last week a neighbour dropped in for a quick visit and caught me in the act of doing my exercises, as prescribed by my therapist. Her jaw dropped and I could see the disbelief in her eyes as she watched me lying on my back whilst exercising abdominals, gluteus muscles etc., and stretching. I knew she was thinking that anyone who could do that shouldn’t be using a wheelchair and I despondently wondered how to explain this strange movement disorder to her, for, like many people, she assumed that all wheelchair users are paralysed. Where do I start to explain to her that what she saw was the last glimpses of a former exercise instructor and dancer: someone whose movement memory automatically kicks in to point her toes and stretch her legs when she starts moving. What she didn’t see was how difficult it was to transfer from the wheelchair to the bed, the struggle to roll over from a face down position onto my back, the ungraceful attempts to get into a kneeling-on-all-fours position, the severe loss of balance when I try to stand….
Her reaction reminded me of those last couple of months in the gym when some members treated me like I was crazy, and I suddenly understood why they thought that. Although my lack of balance made it impossible for me to do the standing (sometimes beginner) poses in yoga, my natural abilities and strength still allowed me to do some of the more advanced poses when sitting or lying down. At that stage I could no longer do any of the movement classes that required balance and co-ordination, but all seemed normal when I used the stationery cycle and stepper machine. I now realise how confusing it must have been when I said that I couldn’t do certain activities because of lack of balance, but then went ahead and appeared to be quite competent at other activities. But that was just me; doing what I could still do to the best of my abilities, and that is what my neighbour saw.
Now I often read about MSA patients who were initially thought ‘crazy’, and sometimes even treated in mental care for some time, before finally diagnosed. If could change only one thing through our awareness campaigns and my blog, it would be to educate people to understand neurological diseases better. The first symptoms are often very subtle, but very real to the patient. Tests are mostly done to eliminate the possibility of other diseases, so when tests come back negative, it doesn’t mean that nothing is wrong. Diagnoses are mostly made on symptoms, and can only be made when a patient has developed enough symptoms. These symptoms can take years to develop. Usually very stressful years, filled with expensive medical tests. During this time one has to come to terms with the fact that something really bad is happening in your body, and instead of getting support, patients are often misunderstood and thought to be psychosomatic nutcases. Hopefully, sometime in the future, doctors will be able to diagnose these diseases earlier to cut back on those traumatic years when one’s life kept in limbo.
Every now and then I read articles on the possibility that exercise can greatly improve the symptoms of Parkinson’s and MSA. Some of them even profess the value of forced exercise. I certainly don’t disregard the value of a regular exercise routine, but if anybody could have stopped this disease by exercising, it would have been me. I put up a great battle for a long time. By the end of 2009, with the help of a neuro-physiotherapist, I tried even harder and in retrospect now wonder if I perhaps tried too hard. Was too much exercise perhaps the cause of my extremely painful and stiff hip?
By the end of January 2010 I no longer had the balance required for the standing poses in the yoga class and my stiff and aching hip made the rest impossible to do. During the next couple of months my abilities started deteriorating rapidly and I started falling more often. By the end of June 2010 I started walking with a stick and gym became too risky. I continued exercising with the assistance of a biokineticist until I was diagnosed with MSA on 6th September 2010.
That dancing, hiking, and fun loving girl seems so distant now, and as I continue on this new journey, she has lost importance. Hopefully I have outgrown her for the better! But occasionally certain images trigger my memory and I fondly remember how much control she had over this body, for now I have little control.