Malcolm Cooke

Apart from being hospitalised with pneumonia at the age of five I enjoyed reasonably good health as a youth and was accepted as grade FE for National Service at age 25. However, by the age of 30 I was aware that if I sneezed or had a spasm of coughing I usually experienced a pumping sensation of blood rushing into my head causing a brief but severe headache. By the age of 35 I knew that my sense of balance was impaired. I was sent to the ENT department of the Bristol Royal Infirmary around the year 1975 for hearing tests which revealed no problems.

I noticed little further change up to the age of 52 when I became aware that I was unable to straighten the little finger of my right hand; a condition which has since spread to the other fingers, and to a lesser degree, to my left hand. In June 1985 I experience a severe pain in my right hand, for which no reason was found. However, I was sent for tests at Frenchay Hospital to determine the cause of my ataxia. A CT scan in December of that year revealed a cyst at the top of the spinal cord.

In February 1986 I was sent to the nearest MRI scanner (St Ormond Street, London) for a scan when syringomyelia was diagnosed due to a build-up of fluid at the top of the spinal cord. To relieve this I was offered a decompression operation at Frenchay which took place in March 1986. The suggested that I could expect to end up in a wheelchair if the operation was not done probably influenced my decision; in the event it has merely postponed that eventuality.

After the operation I had to learn to walk again, with the assistance of sticks. I found that I had a tendency to fall backwards if I did not lean forwards. I had also lost some muscle power in my bottom and, unless I was centrally seated on a seat, I was liable to slide off - and I could no longer run. However, I no longer experienced headaches after coughing or sneezing. In fact, once the pain following the operation had worn off I suffered no pain at all from the condition. My mobility did improve and for a time I was able to walk with just one stick. I have noticed that I now tend to get water blisters on my fingers from time to time.

I was able to return to fulltime work after about three months convalescence. I did not resume driving until early in 1987, and experiencing some restriction in my leg movements, decided that my future cars would have automatic transmission. My GP advised a Driving Assessment in 1995 after which I was restricted to cars with automatic transmission. I also voluntarily chose to use right-hand throttle/brake controls.

Shortly before my early retirement from BT in October 1989 at age 56, I was hospitalised for ten days with an attack of Angina. I was put on long term medication and have had no significant attack since then.

As I was becoming more disabled I decided to apply for Disabled Living Allowance. My two applications in 1991 and 1993 were rejected but with the help of Yate CAB I appealed and at a tribunal in May 1994 was awarded the higher rate of the mobility component of DLA and the lowest reate of the care component. It become clear by 1997 that I was going to need constant supervision both in and out of doors so I applied for, and received, the middle rate of the care component of DLA in 1997 and the highest rate in 2004, although I did fall foul of the Tory Government's Benefit Integrity Project in 1996, and which New Labour was not prepared to abandon. It was not until well after my 65th Birthday in 1998 that I was told that the BEP had accepted that I should retain my current benefits for life.

By the Summer of 1998, it was clear that I was going to need wheelchair transport out of doors on a permanent basis so we acquired a collapsible chair which could be stowed in the boot or hatchback of most small vehicles. By 2000 I was needing two walking sticks, and by 2002 I could only walk very slowly with the aid of elbow crutches. At about this time I was put on long term medication to reduce my cholesterol level.

Following an injury to my left shoulder in January 2003 after which I was unable to raise my left arm above chest level, I was re-assessed and restricted to driving cars with left-hand throttle/brake control, since I can now only steer with my right arm.

I live with my most devoted wife and carer, Margaret who will be 80 this year, on whom rests most of the household and garden chores - although I assist whenever possible. I get around the ground floor with elbow crutches. Due to my balance/ataxia problem, I am unable to use a Zimmer frame or climb the stairs with my crutches. Upstairs, I rely on holding on to door handles and door posts. My arms are quite strong, but my finger work is very poor eg doing/undoing buttons or writing legibly.

I generally manage unaided in the bathroom but I need help in the bath and for washing my hair. We do get some equipment from our South Gloucester Council such as bath rail and bath lift, but as my wife receives a State Pension of her own, she of course gets no Carers Allowance and we do not qualify for any means-tested benefits.

I have resisted the temptation to acquire a computer but will probably have to succumb when my WP/typewriter finally expires! I do not mind computers as such - I worked with them for the last 25 years of my working life, but the Internet is another matter! I find it frustratingly difficult to use and am unlikely to have enough time left to become an expert!

As long as I am able to drive and my wife can assemble and disassemble the wheelchair, we will be able to do short local journeys for shopping etc. We are unable to use public transport as the few local buses which are wheelchair accessible, demand an agility of movement which we cannot offer.