Treatment at the national hospital for neurology and neurosurgery

[BuntyP]

In May I went into Queen's Square for a month of inpatient treatment. I had waited two years from being referred to Professor Edwards to actually getting into hospital. (It's almost like the NHS is massively underfunded). My symptoms started in 2010 after Lyme disease, a bacterial infection that produces neuro toxins and seems to have set the whole thing off.

The treatment at the national hospital of neurology and neurosurgery has been very successful on several levels. I'm not better, but I'm much better than I was and I now have a greater understanding of what's going wrong. I already felt that my brain didn't know where my legs and my left arm were, but what I hadn't realised, as one of the physios pointed out, was that when the involuntary movements are bad, I hardly breathe at all. As I had been suffering from terrible fatigue, this has been probably the most useful piece of information. It made me aware of my frequent lack of appropriate breathing and I discovered things like when I was brushing my teeth, I didn't breathe at all which is why I would then feel faint and have to lie down. Before I knew it was because I wasn't breathing it would make me so demoralised that I couldn't even brush my teeth that the day was ruined before I was dressed.

The second thing was reducing the involuntary movements so that I could actually walk and use both arms again. By running music in my head and counting to prime my motor cortex, I am often much more mobile. I still need to teach myself to walk every morning and I run out of walking and thinking in the evening, earlier if I'm busy, but I can do so much more. and most of the time I don't have to carry my left arm with my right arm meaning that I have no free hand to carry anything else.

I have finally learnt that if I feel the need to rush to finish something before I fall over, it is much better to stop for a couple of hours rather than keep going and then spending 2 or 3 days in bed. And I constantly check whether I am forgetting to breathe, particularly when walking or concentrating or talking. When walking I try to breathe in over 3 paces and out over 5 and actually use more of my lungs.

I have learnt to do things in 20-minutes sessions and then rest and that way I can sometimes have 3 or 4 hrs of usefulness in a day.

As well as occupational and physiotherapy, the CBT helped me to come to terms with my current situation and to be able to calm the anxiety of, for instance, not knowing if it was safe to walk down stairs because I didn't know where my legs were, so that my motor cortex was more likely to hear the messages from my limbs.

Now there are imaging techniques to show that in people like me, the blood flow to the motor cortex is less than in control subjects. My brain truly doesn't know where my limbs are at times, instead the messages from my proprioreceptors will be stimulating the emotional areas and/or sensory cortex. Essentially my brain says where's my leg? And it's getting back purple or the smell of lemons or goodness only knows what! No wonder it felt confused!

Most important was meeting people like me and medical professionals who treated me like a patient and not a time waster.

If you have the opportunity to go there, then go with an open mind, ready for hard work. It has been life changing for me and my family and friends are so relieved and excited by my improvement. Good luck!