On Wednesday 8 September I met a really knowledgeable and empathetic consultant neurologist at Watford General Hospital. After a discussion about my symptoms, he carried out an examination and checked my reflexes with his little hammer. One of the most startling and indicative tests (as I read later) was a test of the reflexes in my feet. I displayed the ‘Babinski Sign’. When the soles of my feet were tickled, my toes instantly and dramatically curled up instead of down. Apparently, this reflex is normal in infancy but when it occurs later in life, it’s a strong indication of damage to the central nervous system.
Before the appointment I’d asked the consultant if he would level with me about the possible diagnosis. Without prevarication he told me that all the signs pointed towards MND. The first step was for me to stop taking statins for a while (there’s some indication that they can cause muscle weakness, and this had to be ruled out). Secondly, I should have a series of tests – nerve conduction and electromyography studies, and an MRI scan of my brain. Thirdly, I’d be referred to a specialist Speech & Language Therapist for help with speech and swallowing.
Within ten days I had my first consultation with my Speech & Language Therapist. This was long before any formal diagnosis of MND. We talked about my experiences of coughing or choking when eating and the types of food and drink that I should avoid as they could cause problems. Foods that are too dry, flaky, sticky, crisp or hard should be avoided. Thin liquids like water and tea would also cause problems and great care should be taken. I’d sort of worked this out for myself already; my own experience was that I could enjoy a creamy cappuccino very easily, and fizzy drinks (including beer!) were OK because the bubbles seemed to help the liquid to be transported when swallowed.
The other subject for early discussion was voice banking. While I could still speak fairly coherently, without too much of a slur, I should record my speech so it could be synthesised for use when I can no longer speak. What a scary prospect that was, and this spurred me into action. I’ll write a separate section on the subject of voice banking because it gets quite involved (but is very satisfying).
On 24 September I had nerve conduction tests and electromyography studies at Hemel Hempstead Hospital. A great doctor and nurse team, and it wasn’t as bad as it sounds. Yes, it does involve fine needles being placed in your arms, legs, chin, and yes some mild electric shocks too… but it’s quite bearable and not really painful.
On 29 September an MRI scan, back at Hemel Hempstead Hospital. This procedure was quite difficult because you have to lie flat and very still on a hard plastic surface for about 45 minutes while the scanner does its extremely noisy work. Lying flat on my back wasn’t ideal because I couldn’t clear my throat properly so it was quite uncomfortable.