was born one month early in a health clinic with a forceps delivery in
December 1954. My mother had had three or four miscarriages previously and for
this pregnancy was advised to lie on her back for two months before the due
date. After birth I was removed from her and taken upstairs, I was later told,
and did not see her for two weeks.
I was late sitting up and walking. A
paediatrician diagnosed cerebral palsy. My mother ignored the advice that I was
to wear leg irons, which was the treatment at the time, and sent me to have
weekly physiotherapy sessions at the Children's Hospital in Nottingham. These
continued until I was about 10. I was encouraged to exercise and make an effort
and in time learned how to cycle and swim and play tennis.
However I suffered from involuntary
muscle movements, poor coordination, clumsiness, and these were particularly
focussed on the neck and shoulders. I also had poor hearing (although it has
not deteriorated much with age I now use a hearing aid) and shortsightedness
(this has also not deteriorated much with age), and asthma/. I suffered from a
lot of early childhood diseases.
As a child, particularly in secondary school,
I was picked on a lot and this added to stress and probably contributed to the
symptoms. I suffered from periods of intense back, neck and shoulder pain
(inflammation). During this period, in my 20s and early 30s, I repressed
knowledge of my cerebral palsy. When I was 27 I woke up one day unable to lift
my arms. This was due to intense inflammation in the neck and shoulders and
X-rays resulted in a diagnosis of non-ankylosing spondylosis and lordosis.
NSAIDs were used to treat it.
In the following years I experienced
these occasional attacks of inflammation, some more severe than others. In the
1990s I developed carpal tunnel syndrome and had operations, first in my right
arm and then in my left arm. I was provided with assistive technology including
a special office chair, a Wacom tablet and voice recognition software to
minimise the use of keyboard and mouse. My tinnitus worsened and has continued
to this day, particularly in the right ear.
A particularly severe attack of
inflammation came between Christmas and New Year in 2003, during which period I
could not sit down for several days; I could either stand or lie down.
Following this I began to notice that I could not move my right leg properly.
It appears that the motor nerve operating muscles down the front of the leg had
been severed perhaps between the second and third vertebrae. I have copies of
the scans. Four years of tests followed to identify the cause which was never
formally decided upon by experts. However my feeling is that the inflammation
cut the nerve connection. At one point a locum consultant wanted to operate on
my neck and replace vertebrae with metal tubes but fortunately this was
Since then I can no longer run or even
walk at a normal pace and my balance has been affected. However I can still
ride a bike, which is easier than walking because the right leg has no choice:
the pedal pushes it up and it pushes down.
I am clumsy, have accidents, and bump
into things and trip over easily nowadays. Recently this resulted in internal
bruising and bleeding.
The act of trying to do something
properly, such as carry a mug of hot tea, guarantees that I will spill it,
because the muscles tense up and spasm. The more I try to control it the less
possible it becomes. What helps are Meloxicam, relaxation exercises, Tai Chi,
chi gung, stretching, yoga, but balancing is a problem particularly on my right
I wish people understood when I was growing up that my startle reflex is part of my CP & not because I am scared or guilty.
What about older people who have C P & spine-abifida & been diagnosed osteosteoporosis but the D W P turned you down p i p but had D L A Indefinitely but going through the appeal courts after been turned down appeal & mandatory appeal do they think you have recovered from what you have got i walk with a walking stick i can't walk far they said i can walk 50 meters without stopping just waiting for the date to go to court