I have been taking part in a fundraising drive raising money for people with cerebral palsy called ‘The Cerebral Palsy Challenge’. I have been wearing a pedometer for the last few weeks with the aim of walking the equivalent number of steps it would take to climb Mt. Everest. The other week I reached the summit and so I have just continued walking. As of now I’m up to 662,841 steps and a rough distance covered of 397.7 km. I say rough as the way I have set up the pedometer is a slight underestimate for my stride length. In any case this post isn’t about me it’s about the fundraiser (if you want to donate click the widget below, or go here) and the condition cerebral palsy.
The first thing about cerebral palsy is that there is no single cerebral palsy, the term is actually used describe a number of non-contagious, non-progressive motor conditions that primarily affect body control, body movement and body development. The term itself is pretty descriptive as palsy refers to any disorder of movement and the cerebral part refers to the brain. Put it together, and it means disorder of body movement controlled by the brain. Originally the cerebellum was highlighted as the site that would result in palsy when affected but in fact it's likely to be any number locations in the brain hat could be involved in palsy development.
Cerebral palsy is broadly broken into three subtypes called spastic, ataxic and dyskinetic. At this stage none of the subtypes are curable (hence the fundraising) and all are distinctly observable from one another. Despite this they all have a common origin, damage to the motor neurons during pregnancy, childbirth or up to 3 years of age.
Spastic cerebral palsy is the most common type of cerebral palsy comprising as many as 90% of all cases. It is also the most manageable of the subtypes and can in many cases be managed through life through physical and occupational therapy to help reduce the symptoms of chronic hypertonia. There are varying types of spastic cerebral palsy that are classified based on the affected parts of the body. The most extreme forms such as spastic quadriplegia and spastic hemiplegia/diplegia affect all limbs or half the body (left-right/top-bottom) respectively but single limbs can also be affected (called spastic monoplegia). The main concern for people with spastic cerebral palsy is the development of early onset muscle stress symptoms and conditions such as arthritis and expression and mobility. As the brain itself is typically unaffected in these individuals the ability to express themselves can be severely limited and certainly their ability to move around can be significantly impaired. In recent years surgery has developed as a possibility to handle severe spasticity and the individual nerves responsible for the spasticity can be removed.
Ataxic cerebral palsy is characterised by hypotonia and is often caused by damage directly to the cerebellum. This inability to produce sufficient muscle tone makes many activities very difficult. Depending on the location of the damage many symptoms are possible but generally, and in addition to the hypotonia, ataxic cerebral palsy sufferers have trouble balancing, co-ordinating muscle movements (like eye movement or fine motor control), trouble walking (sometimes called drunken sailors gait due to the propensity to stop and start or move sideways due to loss of balance), intention tremors (muscle spasms upon deliberate fine muscle use), slurred speech, inability to rapidly alternate actions (like the flexing and relaxation of the bicep muscle), poor depth perception among other vision problems and the lack of a check reflex.
Finally, dyskinetic cerebral palsy is characterised by both hypo- and hypertonia often alternating in the same muscles. This results in acute spasms of muscles and involuntary motions. Because of the alternating hypo- and hypertonia fine muscle control is often impossible and even more fundamental control, such as to place ones hand on ones face, may take a very long time. People with Dyskinetic Cerebral Palsy also struggle with proprioception making it hard to tell where their body exists in space. The damage here is to specific groups of neurons and depending on the location can have varying levels and distributions of severity.
As all cerebral palsy sufferers have a brain that doesn’t talk to the muscles normally there are a number of secondary conditions that can develop. These include seizures, epilepsy, dysarthria, sensory impairment, mental retardation and learning difficulty as well as urinary and/or faecal incontinence. Dysarthria is particularly common further complicating communication of patients and in fact if not caught early can have significant impact on social development. If left unable to communicate many patients simply wouldn’t develop the skill to do so and become passive communicators and exhibition a kind of learned helplessness that inhibits all efforts to communicate for the rest of their lives.
As mentioned above there is no cure but there is still hope and options for people with cerebral palsy. All treatments are targeted at working around any limitations while also using specific therapies like physical and occupational therapy to assist in maintenance of range of motion round joints. Just maintaining this level of activity often has profound impacts, particularly in the young, to help generate new neural pathways which may go some way to limiting symptom development.
And here is why The Cerebral Palsy Challenge is so important. Formed in 1945 The Cerebral Palsy Alliance was formed by the parent of a child born with cerebral palsy. Since that time it has grown into a huge organisation with over 1000 volunteers giving up an estimated $1 million worth of their time every year to support over 4000 patients and their parents. A research institute was also realised in 2005 to target resources and research into this complex condition. There can never be enough money collected but we can always try harder to do more. If you’ve got a few sheckles to kick in, sponsor me up the mountain or just for a very good cause, it would be much appreciated and you can click the linky link to give until it hurts.
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Strauss D, Brooks J, Rosenbloom L, & Shavelle R (2008). Life expectancy in cerebral palsy: an update. Developmental medicine and child neurology, 50 (7), 487-93 PMID: 18611196
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