Disability

As a result of my blog and my willingness to be open and speak candidly about my Disabilities, I’ve had many people find me via Google and message me with questions (often bewildered parents of Disabled young children). I welcome contact and questions, particularly from those who are affected by the disabilities discussed here; this is just my chance to explain what my Disabilities are and how affect me. I hope it sheds some light for those that find me through (re)searching online.

Cerebral Palsy

If you have read about me, you will have noticed that I mention that I have Cerebral Palsy (CP). Cerebral Palsy is a broad term used to describe types of permanent brain damage that are usually caused before, during or just after birth. Often, these types of brain damage impair movement, motor skills, the senses and in approximately two-thirds of cases: the capacity for learning and understanding.

CP affects each person differently, I couldn’t begin to cover here the many different strains and combinations of symptoms that can be experienced by someone with CP — I can only speak from my own experience as everyone’s experience with CP is as individual as they themselves are. However, there is a detailed, but very interesting and relatively easy to follow article at The National Institute of Neurological Disorders and Strokes website that gives a much broader overview, should you be interested.

How I Became Disabled

My mother enjoyed what she has referred to as a perfectly normal, healthy pregnancy; due to be born during the second week of April 1985, I was my parent’s first child and they had little or no reason to suspect that I wouldn’t enter the world a fully able-bodied, healthy baby. However for reasons unknown, contractions began during the night (when my mother was barely more than 6 months pregnant) and by the time she was in hospital, there was little (if anything) the doctors could do to delay my very premature birth, which happened in the afternoon of the 6^th February 1985.

Born at just 31 weeks gestation, I was smaller than the size of an adult hand and without lungs that were developed enough to allow me to breathe. I was placed on a life-support machine as soon as possible, but it is believed that because I was unable to breathe for myself immediately at birth, my brain was starved of oxygen and I incurred the significant and life-long brain damage described above.

I was on a ventilator for a week and in Intensive Care for a further three weeks, before being well enough to go home. My parents were told to expect some developmental issues, but that the full extent of any long-term problems would not be clear until I was older. I was officially diagnosed with Cerebral Palsy Spastic Diplegia at 18 months old, whilst my mother was nearing the end of a difficult pregnancy with my sister¹.

Ataxic CP

Although I have a form of CP known as Spastic Diplegia, I also possess the odd few Ataxic symptoms. The Ataxic symptoms include my stammer (which I had treatment for as a child and is now seldom noticeable), trouble with balance, co-ordination, depth perception and significantly delayed reflexes. I also suffer with intention tremor, where my hands shake when I go to do certain small, fiddly or precise things. I have “good days” and “bad days” with the tremors. Some days I can even do really precise things like plucking my eyebrows with barely shaking at all, other days I can’t even pick up a cup of tea without ending up wearing it.

It is the Ataxic side of things that prevent me from driving; my very delayed reflexes and clumsy limb coordination and lack of accurate depth perception means that putting me in the driver’s seat of a vehicle is like putting someone completely pissed behind the wheel. I’d be a danger to both myself and others.

Spastic Diplegia

In layman’s terms, Spastic Diplegia means that the “signals” sent from my brain to my legs (and to a lesser extent, my arms and hands) are significantly scrambled. This results in my muscles and tendons in my legs being permanently “tensed” (Hypertonia — explained below), my joints being stiff and movement in my lower body being very limited.

Scoliosis

It is also worth noting that I have Neuromuscular Scoliosis, known as my “secondary condition” as it has occurred as a direct result of my CP. It is a degenerative spinal deformity that is common in people with CP as a result of how CP impacts the muscles surrounding the spine.

Treatment

Physiotherapy & Orthopaedic Surgery

Hypertonia causes to tendons shorten and not grow as they should, resulting in it then becoming impossible to move the affected area “normally” without treatment. Physiotherapy helps for the most part; stretching and relaxing the shortened tendons and tight muscles, but sometimes surgery is necessary. I have had regular physiotherapy since my diagnosis as a toddler and underwent various forms of surgery to lengthen tendons throughout my childhood, which allowed me to retain a certain level of mobility.

Between the ages of 4 and 13, I used numerous (Dynamic) AFOs and Orthopaedic Gaiters and I walked with an assortment of walking frames, canes and crutches. Admittedly, it wasn’t very graceful, but it had purpose. (Anyone who witnessed me walking would tell you it was more sheer will as opposed to skill, that kept me upright!) I would even walk unaided on occasion, as long as the distance was short and I could occasionally touch on furniture to keep my balance. I couldn’t stand unaided though, I’m sure it was the forward motion that kept me steady because as soon as I stopped and stood still I’d be in a heap on the floor.

At 13 years old, I had rather drastic surgery, which caused as many complications as it relieved (as is so often the case with the CP/orthopaedic surgery relationship).

Like many babies born with the CP, one of my hips was partially dislocated. This was left well alone as it never caused me any pain, but in my early teens, I was told that if I didn’t have it corrected I would suffer arthritis that would put me in a wheelchair. My surgeon also said that while I was under anaesthetic, they would take this opportunity to lengthen various tendons again. This was a very big operation lasting about 7 and a half hours and I came out of the theatre in a plaster-cast known as a “Hip Spica” — the cast went from my toes on my right leg to the top of my thigh and then around both my hips and base of my back up to my chest, you can see an image here. This was to stop any hip movement while I was healing. I couldn’t even move/sit up and was bed-ridden for the duration, being fed whilst flat on my back, drinking through straws and being rolled onto bed pans (which took at least two people as the cast was so heavy). I was in plaster for 10 weeks and continued to remain bed-ridden for a further 2 weeks.

The problems with my hip were solved and all my tendons lengthened to satisfactory degrees, but this was at the expense of some undesirable side effects. Correcting my hip placement involved breaking and subsequently shortening my right leg at the thigh. (As my hip had been partially dislocated for so many years, the bones in my legs had begun to twist and deform to compensate, this twist had to be removed thus, shortening my leg by 2 and a half inches.) My CP–affected muscles didn’t appreciate this bone shortage and have bunched-up and contracted resulting in me having a slightly wonky thigh bone (only really noticeable if you compare it to the other leg) and a considerable loss of usage in my right knee. (I’ve always had “dodgy knees” anyway — I have high knee-caps that enjoy randomly clunking in and out of alignment with the rest of my leg.)

With some intense Hydrotherapy (which is basically physio in a pool where the water is kept at a bath-like temperature) and several years of physiotherapy, I learnt to walk rather unsteadily with a shoe-raise and crutches, but this progress remained at a therapeutic level and was unsuitable for “real-life” use as it took a good 20 mins+ to put on splints, shoe raise etc and I needed someone with me, guiding me and getting ready to catch me, as I was extremely unsteady and weak.

(Some of the) Surgical Procedures to date:

Medial Hamstring Lengthening x 2
Tendo-Achilles Lengthening x 3
Adductor Release x 2
Femoral De-rotational Osteotomy

Medication

My mobility has since deteriorated further over the years since that operation and I now longer walk at all, not even during physio. As a child, my CP seldom caused me pain. However, this is changing as my body ages. Now, not a week goes by without me experiencing muscular cramp in my hands and/or feet or some form of joint or muscular pain in in my neck, shoulders, spine, hips or legs. Although I find that regular physio, heat and sleep/rest assists in relieving most pain, I am also now on regular, long-term, doses of medication. These include: Dantrolene and Diazepam, after a rather unsuccessful stint using Baclofen.

Alternative Therapies

Recently, I have embarked on the route of using alternatives to the medically invasive methods most commonly adopted to help manage the pain and physical symptoms of my condition(s). I now have weekly sessions of therapeutic massage and reflexology to help combat the spasms and the muscular and tendon/ligament strain caused by the abnormal messages sent for my brain to the rest of my body and the unnatural way my body is forced to move and compensate, as a result.

I am finding the treatment a positive and helpful experience.

Wheelchair

I have been a full-time wheelchair user for about 15 years, I currently drive a made-to-measure Argon Ti by Quickie with a custom, two-tone paint-job. It has changed my world for the better.

In a funny way, I’m actually more independent now in a lot of ways than I was when on crutches. I know that to people that walk that probably sounds like a bizarre statement to make, but for me, walking involved both my arms and legs (as I used crutches). I could never carry anything, open doors or use my hands whilst standing — even having an itchy nose was a nightmare if I happened to be walking at the time. Even when I was on crutches, I still couldn’t do stairs — so there’s not much change there. Not to mention, as my balance was so off, I was forever falling and doing more damage (chipping bones etc).

CP is a lottery, there are many with the condition who can’t communicate, suffer seizures and can’t move any of their limbs — even eating liquidised food is a mountain they have to climb everyday. Also, only one-third of people with CP do not suffer any form of mental impairment. Luckily, I am a member of that third.

This may seem all a bit heavy going to those who aren’t familiar with CP, but I think that everything happens for a reason and I wouldn’t change a thing. For me personally, CP isn’t so much an affliction, it’s simply just another attribute that makes up who I am. It is as much a part of me as being left-handed or having blue eyes. To take away that would be to alter who I am completely and I’m quite attached to “me”, I couldn’t imagine being any other way. I’m one of the very few lucky ones and I’m very appreciative of it.