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Lee’s Story

Lee is a 31-year-old man with athetoid cerebral palsy. Athetoid CP or dyskinetic CP as it is also known as is caused by damage to the basal ganglia or cerebellum shortly before, during or soon after birth. Lee’s was caused during a birth complication which led to his brain being starved of oxygen.

Damage to the basal ganglia affects motor function development and causes involuntary movements.

The most common symptoms of athetoid CP are:

  • Involuntary movements
  • Altered tone, a mixture of high tone usually in the limbs and low tone in the postural stability muscles
  • Decreased postural control (poor core stability)
  • Poor posture in sitting and standing
  • Poor balance in sitting and standing
  • Difficulty articulating speech and controlling saliva
  • Poor coordination of movement.

Lee to some extent has all of the above symptoms, which means although he is cognitively able to do everything he is not physically able so requires 24-hour care. He is a full-time electric wheelchair user.

I first met Lee in January 2016 for a neurological physiotherapy assessment. At this point, Lee was concerned that his physical fitness and endurance was deteriorating and his aches and pains were getting worse. His main goals were to improve his fitness, decrease pain and gain more independence.LeeIn brief, the main problems I found on initial assessment were:

  • Poor quality transfers from wheelchair to bed or chair etc.
  • Decreased postural stability with decreased extension through thorax in sitting.
  • Decreased length in hamstrings, gastrocs, adductors and hip flexors.
  • Uncoordinated movements throughout upper and lower limbs.

Although the cause of these problems cannot be changed I was confident that physiotherapy and a strict exercise regime could greatly improve Lee’s quality of movement and have a positive impact on his quality of life.

Luckily Lee was up for the challenge and therefore we began our exercise and fitness Journey.

Started Slowly

My number one priority was to make Lee’s transfers as safe as possible whilst maintaining his independence. Therefore, each session we spent a small amount of time practising the correct transfer technique and slowing down the speed. I also encouraged Lee to ensure that every time he transferred to use it as an opportunity to practise physiotherapy techniques such as activating core muscles appropriately, appropriate weight transfer of thorax forwards over the pelvis, weight bearing through lower limbs and coordination and control of movement.

Stretching and flexibility Regime

In the beginning, Lee was unable to lie completely flat on his back with his legs in contact with the bed due to decreased length in his hamstrings and hip flexors. Lee’s legs were also unable to move separately from each other due to tightening in his adductor muscles.

Therefore, every week during his physiotherapy sessions we worked together on stretching these muscle groups. The evidence is limited for passive stretches, therefore, Lee always completes these actively with guidance and minimal assistance from myself. Lee now continues to do these stretches independently.

Weight bearing/standingLeeWeight bearing and standing for wheelchair users have so many benefits.

These benefits include:

  • Improving breathing and lung function,
  • Improving bladder and bowel function.
  • Maintain and improve bone density to prevent osteoporosis.
  • Build strength and increase length in certain muscle groups such as hamstrings and calf muscles.

We began by standing to the work top and standing as upright as possible for as long as possible and gradually increased the time each week, Lee now works on this independently as part of his daily exercise regime.

Postural stability exercises

Having good postural/ core stability is really important for people with neurological conditions as if the limbs have no stable base to move away from they are unable to move efficiently and instead are used inappropriately to fix and stabilise. If arms and legs are being used for stability, then they are unable to be used appropriately for movement or function.

I began helping Lee to increase his core strength by simply helping him to be able to recruit and activate his core muscles. We then progressed to Lee switching on his core and practising sitting upright without using his hands or arms to keep him upright. Lee has recently been able to further progress to more dynamic exercises such as maintaining sitting balance whilst moving the limbs and this has carried on into function and Lee is able to make himself a hot drink as his core is strong enough to keep him stable which frees his arms for functional activities.

General strengthening and cardiovascular exercise programme

Maintaining cardiovascular fitness is really important for general health and wellbeing. It also has many other benefits such as helping to reduce fatigue, increase energy and boost mood.

It can be really difficult to work on Cardiovascular fitness when you have Cerebral Palsy, due to difficulties with movement and limited access to gyms, however, with guidance there are lots of different ways to exercise and improve fitness levels.

Luckily Lee is super motivated and keen to try any new forms of exercise. Lee has gradually made his own home gym which he uses every day to maintain his overall strength and fitness.

Lee started off with an exercise bar which we could adapt to do a variety of exercises such as lower limb pedals, arm pedal in 4-point kneeling, sit ups and press ups. We started with low reps and have gradually increased these as Lee’s fitness has improved. Lee was also keen to use his arm weights to work on his biceps! Which he added into his fitness regime.

In the past few months, Lee has purchased an exercise bike and not only is he able to transfer safely and independently on and off the bike, he is also able to comfortably cycle for 20mins per day.

Motivation and determination works!LeeLee works hard on his exercises and his fitness regime and has steadily built on these over the past year. As a result of all his hard work he has made the following achievements………

  • Transfers are now safe and independent. Lee is even able to transfer on and off his exercise bike independently.
  • Timed supported stand has increased from 20 seconds to 2 minutes and he is able to keep his heels down in contact with the floor throughout
  • Lee can lie comfortably on his back, with the backs of his knees in contact with the bed.
  • Lee’s cardiovascular fitness and endurance has significantly improved. He is now able to exercise for a solid hour without breaking a sweat! This has improved from 20minuets 1 year ago.
  • Lee can cycle for 20 minutes without stopping for a rest.
  • Lee has more energy and less aches and pains.
  • Lee has increased independence, he is now able to stand for toileting and can make himself a hot drink.

As a result of all these positive changes, Lee is currently in the process of reducing his PA time from 24 hours a day to just 6!

Well done Lee!

One response to “How to help prevent deterioration in adults with cerebral palsy and maintain overall health and fitness.”

  1. Yacon Root says:

    Awesome Blog. Really enjoyed reading.

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