Work

I have always worked throughout my adult life and it has successfully occupied my time.  The turning point in my professional life was in 2000 when I took on the University Vocational Awards Council as the founding chief executive, part-time.  This allowed me to portfolio work which is what I have done by setting up my own consultancy company, Safe Hands Management Limited which is in its 11th year of trading.  So I have a regular income to pay the bills and additional project income which can vary enormously.  Working like this also has the benefit of largely working from home in a small converted barn next to my home.  In retrospect, I'm rather glad I took this decision because, as MSA increasingly takes over, I would have been unable to hold down a full-time job.  It was already beginning to happen but I didn't know what it was when I was working at the University for the Arts on the Creative Industries Observatory project in 2009.  This was primarily around an increasingly unmanageable bladder, and a noticeable slowing down of my walking particularly uphill.  I put it down to getting older and increasingly unfit and just left it at that.  At this time I was travelling to London once a week, catching the 6:55 AM train to London from Skipton arriving at 9.50 am, then a 30 minute tube ride to the Elephant and Castle.  By the way, have you ever seen public toilets on the underground?  When I needed one, I couldn't find it!  I would often stay overnight at the Reform Club and have other meetings or another day at the University.   This highlighted another irritating result of having MSA.  I could not undo the buttons on my shirt cuffs or do them up for that matter.  Consequently, I used to choose shirts that allowed me to get my hands in and out without undoing the cuffs.  This dramatically reduced the choice of shirts I could wear.

Slowly and surely MSA has had its way.  Several of my contracts came to an end.  I did not try to renew them or get new business because I was getting tired quickly [I now know is to do with low blood pressure] and finding it more difficult to travel. It suddenly dawned on me that I was progressively being de- skilled, and becoming more childlike, relying on others to do things for me, like buttons!  Anyway, I had two books on the go and had moved to Middlesex University, Institute for Workbased Learning as a part-time Professor of Creative Industries and Workbased Learning.  The only problem with this is that Middlesex University is largely in Hendon and a bit of a trek to get to.  I also was completing a doctorate in professional studies by public works.  As Mark my oldest child, and history lecturer at University of York, said to me I had done this the wrong way round, normally the doctorate comes first, followed by a professorship later.  I was also editing and still do the Creative Industries Journal.  I wanted to continue working as long as possible as well as being forced to live with this disease, which is destroying more and more of my functions.  An example of this is my inability to write legibly and as for signing my name, it is laughable.  I don't know how the bank allows it.

So I began to slowly reshape my working day.  There is not much I can do to control MSA, but as one Parkinson person said to me when I went to a Parkinsons UK branch meeting in Skipton, ‘ if you don't use it you will lose it’.  I have taken this on so I try to go to the gym three times a week at the Devonshire Arms Hotel Spa in nearby Bolton Abbey.  The staff there are great and look after me.  They have even managed to earmark cubicle 1 for me.  So the days breakdown into working in the morning from around 9am until about 12:30pm, a leisurely lunch and off to the gym which is about 5 miles away at 1.30pm.  I exercise for about an hour and a half with a programme that is designed to counteract MSA.   I get back about 4:30pm have a cup of tea and cake which is an MSA indulgence before going back to the barn to do some more work.  I also do my physio exercises in the morning when I get up and when I go to bed.  Another indulgence is starting work in the morning later than I have for years and no work in the evening.                                                                                                                                                                                                                                                                                

Computers make it possible for me to work from home and I am learning all the time but rely on my computer man to get me out of trouble when I have been silly.  I hope I can reconfigure my computer to cope with my changing circumstances, so any advice would be appreciated.