Relationships

One of the hardest effects of MSA to take on board I have found is the way the disease changes perceptions.  It is a test for friends, family and professional colleagues because the physical changes over time are profound, but apart from that not much have changed, I still think I am the same person I have always been more or less.  Just because I have difficulty talking it doesn't mean I have nothing to contribute.  Just because I find it difficult to walk when I go for my hospital appointments I am put in a wheelchair and pushed.  On the work side of things I have seen and experienced the good and the bad.  My closest colleagues have been good by treating me in much the same as they always have yet making allowances especially over travel and number of meetings, using conference calls and Skype instead.  I experienced the bad when a consulting contract with a charitable organisation was coming to an end                     and I was in discussions with the chairman about renewal. I mentioned my health problem, not least because he had told me he had been diagnosed with Parkinsons and my contract was not renewed.  I think it is the ‘damaged goods’ syndrome, nobody wants ‘damaged goods’.

Often people don't know how to treat somebody like me and at times I feel like a stranger in my own land,  particularly in familiar social settings with people I have known on and off for years.  It seems that the physical manifestation of MSA dominates and shapes the way people react to me.  Generally, the reaction is to help with things like getting out of a chair because they can see that I am struggling. They don’t realise that it is important to do it myself as part of my fight against MSA, however long it takes and difficult it is for others to watch. Other examples have been, when I get on the Underground in London.  I always get a seat because I'm bent over even though I might not want one because I only have one or two stops to go.  On one occasion I was standing on Pall Mall about to hail a taxi, when a smart young man raced across the road to me and asked me where I was going and could he help!  He was very insistent I needed his help.  I managed to persuade him that I knew what I was doing, but who knows what his motives were. Feeling vulnerable seems to play its part too.  Again I was on the Underground on the platform at Kings Cross waiting for a train when suddenly I was pushed in the back by a young black man, who shouted ‘get out of my way old man’.  I was pretty scared because platforms are narrow on the Underground and my balance is not good.  More to the point I was upset about being called an old man!  After all I am only 63 and I don't feel like an old man, but the physical effects of MSA make me look much older than my years - bending over, saliva dribbling and continence problems.  This is a pretty bad example of behaviour, but I have been pushed and shoved so many times I have lost count when walking on pavements in cities and towns.  Everybody is in a hurry and I am a slow walker now.

I can see from my family’s point of view [see picture underneath without me I took the photo] that they have known me as a mountain walker with lots of energy, working hard and living a full life gradually turning into the opposite with an assurance that it will not get any better.  But I still feel I am me the person I have always been, trapped inside a body that is going wrong and there is very little I can do to stop it.  This changes the relationship dramatically from being an independent contributor to dependent.  This is hard for everybody involved and one of the ways of counteracting it I have found is to talk about it rather than bottling the frustration up - life is now too short to mess around!

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!

A continuing saga

Friday comes around far too quickly!  Today I want to go back to the way my MSA ‘friendship’ has developed and continue with the saga.  The five days of tests kicked off the next phase, with a specialist physiotherapist getting in touch and a speech therapist.  I was already on the books of the Continence Clinic, so now my NHS team included my GP, Prof Lees and his team, Prof Matthias and his team, Mr Koenig the urologist consultant, the speech therapist, physiotherapist and the continence nurse.  Not bad, considering all they can do is provide palliative care.  In other words, make my decline as pleasant as possible.  Talking about decline, what really gets me with this disease is its capacity to attack the very things that matter to me, like walking, eating and talking!  It also has the capacity to humiliate with urinary and saliva problems which I no longer control.  It is like some alien progressively taking control of my body.  Oh yes, there is one other embarrassment to cope with, making noises when walking.  It is like   I have been a smoker all my life on 40 a day.  It sounds as though I am at death’s door, so people turn and stare and look very concerned.

If 2009 was the year of discovery, 2010 turned out to be about establishing a pattern of living and learning to do less.  My week takes a very different shape now, generally working in my converted barn office in the mornings and going to the gym in the afternoons, with an occasional trip to London. During the year my book on Understanding Workbased Learning was published by Gower not bad considering the circumstances. I was also put on a six monthly cycle for my medical consultations in London.  My drug regime remained quite stable over the year, with one drug to help with movement and the other to assist with urinary control.  It's amusing really when you have a consultation.  You have to explain everything all over again and do the same tests again to generate the same conclusion, except perhaps things are getting slightly worse.  So, for example, I mention my urinary problem is not getting any better so the doctor gets out the drug dictionary, quite a big volume, and looks up to see what is available and then prescribes a new drug often with little explanation of what taking it will be like and any side effects.  This information is never offered unless I ask.

So things were settling down until June 2010.  We had arranged with Grace our youngest daughter to attend her graduation in St Andrews [following a certain Royal couple’s footsteps] and stay overnight because it is a 250 mile journey there.  We were all looking forward to it but I had been making terrible noises at night and had a chesty cough, which I dismissed as nothing, typical male reaction, but it persisted.  I decided to do something about it because I didn’t want to be making that kind of racket in the hotel.  I was so loud and noisy that Liz would get out of bed in the middle of the night and go to one of the other bedrooms to get some sleep but even with the doors closed she could still hear me!  So I phoned my GP at the prescribed phone in time and told her about my chesty cough.  Boy did things happen quickly; she wanted me in the surgery straightaway.  I went there in the afternoon and she did the usual tests of listening to my lungs and blowing into a tube.  I was then fixed up with an emergency X-ray at Airedale hospital and told if things didn't improve quickly I would have to be admitted into hospital, which would mean I would miss Grace’s graduation. I certainly didn’t want to do that -  after all the money we had spent on her I wanted to see what I had paid for!  So I was put on some hard-hitting antibiotics and hoped for the best.  I had never seen my GP move so quickly and show real concern.  It all turned out okay in the end, the antibiotics worked, I felt better and we had a great time in sunny St Andrews.  When I went back to my GP and asked her why she had been so concerned she said it could have been pneumonia which would kill somebody like me with MSA and that in future I should get in touch if I developed a chesty cough again.  What I also learned from this is that it is common for people with MSA to die from some other malfunction caused by the MSA.  More things to look out for!  I will write again next week about trials, drugs, and consultations.  I hope you are still enjoying reading my blog and finding it informative. A big thank you to everyone who has sent me messages. Keep them coming!!

Back from my holiday.

I had a great time in La Rochelle, just what I wanted, sunshine and warmth, good food, and relatively quiet.  It was good to spend some time with grandchildren too.  From an MSA point of view the travelling was not as problematic as I thought it might be, I think this because they were too small airports so I didn't have to walk long distances.  I had a bit of a wobbly session at the beginning when we're going out and a bit of balance problem when I got on the plane going home, and that was about it.  I cannot carry very much, only hand luggage.  I was dreading the security checks because they might ask me to take my shoes off, which would be a challenge and take some time holding everybody up, then putting them back on again another saga.  But I think the picture.  I painted of myself with a stick and bent over, got a sympathy vote.  So I went through without any difficulty.  Another advantage of MSA is that you are given preference in check-in!  I love that!  On the way back we again had to go through passport control, it is quite a walk and my noisy breathing got louder and louder so passengers were looking at me and thinking what is wrong with him.  Anyway I got to the queue the security guard was so concerned he took me straight to one of the desks to have my passport checked.  So there is some advantage to this disease.  The highlight of the week though was a bicycle ride because it was bicycle country.  I can no longer ride a bicycle because of my balance problems, but luckily we found a bicycle hire shop that had a wheelchair attached to the backend of a bike.  It looked like a Heath Robinson designed machine, and James my son-in-law was prepared to peddle me around saying it was good exercise for him.  We all went on a coastal path and James had to be at the front of our little party.  In so doing he went over bumps at high-speed, where my bottom regularly departed from the seat and I was on the front of the machine, with no seat belt.  Oh yes, I nearly forgot to mention that this machine hardly went round corners, so I had to move my weight around just like sidecars , but it was a a lot of fun. The rest of the family had already hired their bicycles and been busily exploring the island we were on, so for me I could join them do something together.  MSA gradually erodes movement reducing participation and makes everything much slower, life in the slow lane as I describe it.  Consequently I have become a spectator rather than participant in things family and friends are doing even the most mundane tasks like shopping or gardening becoming increasingly difficult to do and it is an effort!  I am now looking for more exciting adventures so if you know of any good ones suitable for a disabled person let me know.

Finally, Adam, the eldest son of James and Eve asked where and how I caught the disease,  I couldn't reply with a full sensible answer.  Next week I will continue my story.