Living with Dystonia from her teenage years, Sandra was always told by her doctor as a child that there was nothing wrong with her and that it was all in her mind, even though she couldn’t lift her feet to walk.
It was only once Sandra was in her mid-30’s that a visit to a neurologist confirmed that it was not in her mind, but was in her brain and the condition she was living with all these years was dystonia. Sandra said, ‘It was such a relief to know that I had a condition with a name.’
To start with, Sandra was put on a course on medication, but unfortunately the side effects outweighed any progression to be able to walk. ‘I used to think how easy it should be to just put one foot in front of the other but for me it was so difficult – literally like picking up each foot to do each step. Walking any distance at all was exhausting.’
‘I tried to conceal my limp with a skipping motion. I was extremely self-conscious and embarrassed and lacked confidence. I felt people were staring at me and I made excuses not to walk with anyone.’
With her walk worsening and eventually needing a stick, Sandra didn’t think her mobility would ever get better.
In 2011, Sandra was recommended by her neurologist for innovative treatment of deep brain stimulation (DBS) surgery. DBS is where an electrode is inserted into the brain and a stimulator into the chest to help deal with tremors and seizures.
Sandra happily agreed to surgery in the hope that it would help her walk again… and it did! ‘I underwent the operation thinking even a 20 per cent improvement in my condition would be good. At the end of the operation I even walked out. I have not used the stick since!’
‘I can walk to all my local amenities and wear any footwear, even open toed shoes. We (her and partner David) even went on a walking holiday and one day walked 13 miles. That was impossible before. I missed out on adult life… until now.’
Brain Research Trust helps fund research into neurological conditions nationally. If you live with a condition and would like to find out more information, please click here.