Trials, drugs and consultations

One of the reasons I wanted Prof Andrew Lees was because he is very active in researching Parkinsons and MSA and as a result, the treatment I receive should be informed by the activities.  The flipside of this is that you can be a guinea pig and contribute to finding a solution.  For example, in 2010 I was asked to participate in a project to improve the accuracy of the scanning machines.  Normally scans are about 20 to 40 minutes long, and he wanted to run the scan for 1 hour 30 minutes.  You have to remember that these machines are incredibly noisy and the patient goes into a small tube in the machine head first, the head being held in a cage like construction, so it cannot move!  If that wasn't enough, the patient is slotted into the tunnel with a panic button with music piped into headphones, which act as mufflers to counteract the noise of the machine. A mirror enables the patient to see a little of what is happening outside in the room.  Now for anybody with the slightest whiff of claustrophobia this sounds like torture and to the asked to do nearly double the time would be the end, so I politely turned down the invitation to participate.  That wasn't the end of it a few weeks later I was asked whether I would participate in a drugs trial.  It was to test an Israeli drug called Rasagaline used in the treatment for Parkinsons but not MSA, so the test was to see whether it would make a difference to people with MSA.  It was an international trial with several other countries, including USA taking part.  Of course I said yes because I would either be chewing placebos or the real thing for six months, anyway it seemed to be a pretty painless activity.  So I was checked out for suitability and that was fine, then they wanted my drug list.  I was contacted a couple of weeks later and they said that one of my drugs was not compatible with Rasagaline and so I was no use to them, but might be of value to a team of medical researchers led by Professor Mathias at St Mary's Hospital, Paddington, where there is an autonomic nervous system specialist unit. The study was called: ‘Effects of endurance exercise training in autonomic dysfunction patients. The background to and aim of the study was ‘Autonomic nervous system dysfunction syndromes result in a range of features which can include poor blood pressure control and fainting, decreased psychological health and quality of life. No study has yet to thoroughly test the effectiveness of an exercise training programme in improving autonomic dysfunction and its features in autonomic dysfunction patients. The primary aim of this project is therefore to determine the effectiveness of controlled exercise training in autonomic dysfunction patients.’  This was great for me, as I was already going to the gym 2 to 3 times a week!  What could be better and I was interested anyway to find out whether physical exercise can make a difference, so I signed up for it.  I had to fill in loads of questionnaires and go to London, St Mary’s Hospital, Paddington to have a physical check over which lasted a couple of hours.  They were getting a baseline of my autonomic system.  I was rapidly becoming very familiar with the autonomic tests, including the tilting bed and the ice pack.  It also gave me the opportunity to ask lots of questions. The test led by Dr David Lowe (who always called me Prof) was for six months in my case, and I had to keep a record of my blood pressure every time I went to the gym.  This included the average, the highest, the lowest and the length of time in the gym.  This highlighted an interesting effect of MSA, which is that I can’t hand write legibly any more so Liz had to keep the record. Another hidden delight of MSA!  I completed the trial in June this year with another session in London.  I am looking forward to hearing the results.

It is interesting to note that St Mary's Hospital is partnered with Imperial College and the National Hospital for Neurology and Neurosurgery is partnered with University College London, so I was up there with the top university research centres.

Professor Mathias who heads up the research at St Mary's and me

There is a postscript to this because when I went for my final examination there was a test within a test!  I was asked would I mind doing a smell test for a Ph.D. student who is trying to find out whether the autonomic nervous system affects smell.  Smell sticks were put in my nose and I was asked to identify the smells. There were 16 of them and I scored 14, not bad.  Oh yes, I forgot, I spent the afternoon in Hammersmith hospital, where there is another unit associated with St Mary's and I was subjected to yet another test which included a biopsy – some skin was removed from my leg to find out if the autonomic nervous system affects the sensitivity of the skin, i.e. its ability to react to cold and hot.  By the end of the day I think they had got their money's worth from me.

Finally, my consultations are every six months and when I arrive and check in to Prof Lees’ clinic, I have no idea who I am going to see.  It is a lottery.  The usual exercises are performed and usual questions asked and eventually we get around to my agenda.  To help do this I produce a checklist of MSA symptoms with my judgments as to I'm performing. When we reach the stage of changing the drug regimen the doctor goes out of the room to find Prof Lees and discuss it with him. I am left on my own for about ten minutes until he (it usually is a he) comes back. Sometimes if you are a problem (I usually am) he might comeback with the Prof.  Is this how all consultations work?  Until next Friday, have as good a weekend as you can!  Let’s hope the sun shines!