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MGA News

April 2000

Life With Gravis - Open University

M Gravis

"I am now one of the Alumni" I announced to Mrs Gravis, over the breakfast table, having opened my post. " I hope it doesn't hurt and that you will soon get over it" She replied without looking up from her Cornflakes. I patiently explained that, having successfully passed my final Open University exam, I was now a graduate with a BSc and as such a member of the OU Graduates' Society, 'The OU Alumni Society'. She still did not seem terribly impressed, but then that's what family are for, to bring one down to earth.

It was her cousin who started it all off. When I had to retire on medical grounds, she said "well, what are you going to do to keep your mind active? Your body may be weak but you can't just vegetate. Why don't you do a degree course with the Open University?" You can tell by her voice of authority that she is one of Mrs Gravis' close relatives. At this stage I had not been diagnosed with MG and, although not able to work, was still reasonably with it, so thought it might be an idea worth following up.

I found an OU enquiry form in one of the national newspapers, filled it out and sent it off. In due course I received an information pack. This was in September 1992 but, on reading the application notes I discovered that the OU year began in February and, that to start in February 1993, I should have applied in the previous May. This looked like quite an honourable escape, at least for one year, I could become a vegetable after all. However, knowing Mrs Gravis' cousin, this had to be watertight, so I rang the enquiry line number given for the Regional OU Office. By some quirk of fate I was put through to the Regional Director. She listened to my story, asked about my circumstances and then said "What courses do you want to take?" "Science and Computing" I replied. "That's not a problem", she told me, "a number of places are reserved for disabled students and there are still vacancies on the Science Foundation Course in our region". I was cornered. She sent me the enrolment forms, which I filled in and returned with my fee for the year. In November I received details of my Tutor Counsellor, Course Tutor and a preliminary study pack for the Science Foundation Course, which was designed to help ease new students into the first year course. I was also put in touch with our local higher education college which was running a `Return to Study Course' tailored for new OU students. This college was also the centre in which OU tutorials were held.

A Tutor Counsellor keeps track of the students allocated to him and helps with general study problems. Mine has been a tower of strength during my whole period of study, not only in terms of my academic and logistical needs, but he kept in touch with Mrs Gravis when, after my second year, I had a Myasthenic crisis which put me into intensive care for Christmas. The OU exam results tend to land on the doormat on Christmas Eve. By this time I was in a highly drugged state and convinced that I was on the way out. Mrs Gravis came in and told me that I had achieved a grade 2 pass. I can remember being quite cross that I had done so well, but would never get my degree. That and the fact that there were several bottles of wine at home, only recently purchased, helped change my mind about dying. Fortunately I recovered in time to start the third year, the first month in a hospital bed with the support of the consultant and nurses.

The OU teaches by means of Home Study Packs, Tutorials - in which the course tutor meets with his students for additional study - and some Residential Summer Schools. The Course material includes all necessary equipment, in the case of Science Foundation, I had a large box which included a chemistry set and equipment for doing simple physics experiments.

Most courses of study take one academic year, February through to October and require an average of 15 hours commitment per week. By doing one and half-hours in the morning and the same in the afternoon, I found that I could manage. It also meant that Mrs Gravis knew where I was and what I was doing. Throughout each course a number of assignments have to be completed and sent to the course tutor for assessment. There were times when I was not well enough to meet the deadlines. Here I found the OU and my tutors very supportive, deadlines were extended by a week, providing that I, or Mrs Gravis, phoned and let the tutor know what was happening.

During my first year I was strong enough, with the aid of a wheel chair, to get to the tutorials. My Tutor Counsellor ensured that there was disabled parking and wheel chair access. I went to the Residential Summer School, held on the campus of a full time university. Here I found that my special needs had been catered for. I was allocated a room and bathroom, adapted for disabled use, on the ground floor of the Hall of Residence. At meal times there was a helper to get food from the refectory service counter for me. If I required it I could , by prior arrangement have had a special diet. In the lab sessions, where appropriate, I was allocated a helper. If I had required it I could have had a full time helper, or could have taken Mrs Gravis as my carer. Not all courses have residential schools, most of mine did not. On the one occasion when a course did involve Summer School, at a time after my condition had deteriorated to the point where my GP said it would be unsafe to attend, the OU granted me a dispensation. My course tutor helped with alternative studies to make up the work.

During the second year I became too weak to attend tutorials and so the OU arranged for my course tutor to visit me at home twice during the year for one to one tutorials. I also took advantage of the `self help group' system whereby students in the same area are put in touch with one another to form study groups. I made a number of new friends this way.

In October of the first year I took the exam at the regional centre, but thereafter, because of failing health, the OU allowed me to take them at home. An invigilator brought the exam paper to my home and supervised me. Because my handwriting had deteriorated to a point where I could no longer write legibly for any length of time, I was permitted to use my word-processor. Not being a touch typist I was allocated extra time to key in my answers. I was also given rest breaks during which I could take my medication and attend to those frequent calls of nature experienced by those of us on Mestinon. For all but the final year I had one of two very kind ladies appointed as my invigilator. Whilst making sure that everything was done correctly, they made me feel as at ease as was possible under the circumstances. They always left assuring me that they were sure that I would pass and with strict instructions to phone and let them know the result at Christmas. When the next exam came round, whichever one came brought the good wishes of the other. Due to unavoidable circumstances, neither was able to invigilate for my final exam, but they contrived to send good wishes via their replacement. He was an OU graduate and was as kind and helpful as the ladies had been.

All the additional help which I received was arranged through my Tutor Councillor and the Regional Study Support unit. This unit holds a Student Needs Profile, which lists all the additional help required by a disabled student, it is regularly updated with the student.

Although it was hard work, I enjoyed my path to becoming one of the Alumni, and no it doesn't hurt. There were all sorts of unlooked for pluses. The biology element of the Science Foundation Course gave me enough background to be able to understand the mechanics of MG. Whilst not mentioning MG, it dealt in some detail with nerves, the function of Acetylcholine and its effect on the muscle receptors . It also dealt with the immune system and how antibodies are produced.

The Open University is not for everyone, but if you are interested in following a course of study, with the choice of wide range of subjects, then it's worth considering. You don't need `A' levels, just a good standard of literacy and numeracy. Until recently there has been very little available to OU students in the way of help with course fees, most seemed to be self funding or have the support of an employer. However, my Tutor Councillor tells me that recent Government initiatives have changed the situation somewhat, the OU will have all the information

If you are interested then full information can be obtained from:

The Open University,
Walton Hall,
Milton Keynes MK7 6AA.

For those who have access to the internet the OU website at www.open.ac.uk has a section. 'Courses and Qualifications'.

Editor's Note:
Well done Gravis. After all your adventures we can see that you are really set to face the future! Good Luck

MGA NEWS April 2000
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