The Trial - Here we are at month nine already

 

My nurse has changed again. That’s the fourth one now in nine months. But Anna, who had at least been at the Clinical Research Centre for long enough for me to have seen her about during my last visit, was standing in for Donna’s replacement. Dorothy’s words came to mind when she arrived in Oz… “My… people come and go so quickly here”. “You do seem to have a high turnover of staff in this place,” I said to Anna. “Yes,” she replied but did not elaborate any further.

 

As I had rolled into the clinic on my scooter, Andrew was already in the waiting room. It was good to see him again but we didn’t get time to say much more than the usual greetings before Anna appeared to take us through.

 

The first thing I needed to do was that horrid Columbia Suicide Severity Rating Scale Questionnaire that I have to do every visit. Wearing my clinical head, I can see that if I were to be suicidal, it is a very good questionnaire and goes into enormous detail. But as I am not, it was very tedious.  

Then Dr Anthony came in and it was time for the Extended Disability Status Scale (EDSS). It is a much used and much derided scale for measuring disability in Multiple Sclerosis (MS). It is subject to the opinion of whoever is conducting the test. One doctor’s level three may be another’s level two. I swear it was harder than ever but, by the end, he seemed to think not. He thought I scored a notch lower than last time, which is an improvement. “I know I’m meant to be the blind assessor and not compare,” he said.

I see two sets of people. There are those that follow the trial as it goes. And those who assess at specific points, the bind assessors. The two are not allowed to confer so that the assessments can be as objective as possible.

“It’s hard not to though,” I replied. “That’s why I don’t look at the names,” he answered, “because then I do.” When he did the tuning fork thing, I’m sure more of me was too numb to feel it than last time. But I am always fascinated by the randomness of where I’m numb and where I’m not. The nine hole peg test was definitely harder. I was much more fumbly in picking up the pegs and even less co-ordinated in putting them in the holes. But the 25ft walk test, although slower, was steady enough. And when I walked the furthest distance that I can, I wasn’t as exhausted as I have been in the past.

So there is hope. More about the visit next week…