FA challenges balance and coordination. Physio and exercise are important and interrelated – exercise is about strength, physio is about control. You need both.
Physio (especially neuro physio) trains and retrains your brain’s ability to send, receive and act on signals from around your body. FA challenges your heart and lungs and regular exercise helps protect them.
Separately, but connected with both, a key principle we need to consider always is that prevention is better than cure. “First of all, avoid a fall”.
You should ask your neurologist to refer you to a physiotherapist who specialises in treatment of neurological cases (stroke, FA etc). They’ll recommend a programme of activities that you should do regularly to maintain and even rebuild control, balance etc.
Remember, both physio and exercise is important in different ways – physio is about control, exercise is about strength. You need both.
In developing or evaluating an exercise programme, it’s ideal to involve an exercise physiologist. They’re like a fitness trainer who understands neurolological conditions. They’ll tell you areas to focus on in your regular exercise programme and can either suggest exercise (swimming etc.) or if you go to a gym, can tell you things that you can do there that’ll be beneficial.
To quote from Dr Mark Payne at the 2012 FARA scientific symposium at USF “The importance of regular exercise to maintain cardiovascular heart health can’t be overstated”.
I recommend strongly getting at least one of your EPC appointments (see chronic disease management plan) be put towards exercise physiology.
Physio exercises
It can’t be overstated how important it is that a physio programme be developed after individual consultation with a physiotherapist familiar with neurological disorders. They’ll take into account the stage of FA degeneration and living circumstances as well as overall health & wellbeing, how often an individual can do exercise and any injuries/frailties that might need to be considered.
To give you an idea of the sort of exercises they’ll prescribe, click here to visit Ataxia.org and learn about a range of exercises that have been prescribed for FAers.
Guest article: Physiotherapy management of Friedreich Ataxia (FA)
Individuals with Friedreich Ataxia experience unsteadiness with walking, loss of dexterity with fine motor skill and a high risk of falling. The role of Physiotherapy in the management of FA is to optimise function as long as possible and to minimise disability, deformity and pain. The primary goal of many individuals with FA is to prolong their locomotor ability for as long as possible, whilst minimising their risk of falling.
A comprehensive assessment by a Neurological Physiotherapist entails evaluation of gait, strength, flexibility, range of motion, balance, coordination, spinal alignment, posture, functional status, foot posture/alignment, endurance, reflexes and equipment needs. A range of standardised assessment tools are employed to enable comparison at periodic reviews (eg annual), as well as to customise an exercise program.
Physiotherapy intervention for individuals with FA should target balance and co-ordination to assist with safe and effective mobility and function. Muscle strengthening and general endurance and conditioning will play a key role in maintaining overall fitness levels.
Education regarding falls prevention should be provided where safe mobility is compromised, as well as discussion regarding options for adaptive devices including mobility aids or wheelchairs.
Establishing a reasonable and safe exercise program is of great importance too. An individualised home or group exercise program may also contribute to a patient’s sense of well-being. Once an initial program is established and the therapy sessions are completed, a patient should receive periodic re-evaluations with accompanying updating of the home program. Because of the progressive nature of FA, gains in strength or coordination should not be expected, but instead the desired outcome is prolonged function and a higher quality of life.
Contact a Neurological Physiotherapist physiotherapy.asn.au (Find a Physio) to discuss options for a comprehensive assessment.
Our thanks to Jennie McCorkell of MyTurn Rehabilitation in Brisbane for this article. Jennie is a qualified Neurological Physiotherapist who cares for patients recovering from stroke and living with Parkinson’s disease and other movement disorders as well as FA.
Guest article: Friedreich Ataxia and Exercise
Friedreich Ataxia (FA) is relatively rare inherited degenerative disease of the nervous system affecting the coordination of muscles. Individuals with FA will usually exhibit loss of physical coordination, loss of balance, unsteady gait, weak muscles and poor muscle tone. Depending on the onset of FA some individuals affected will need the use of a wheelchair while others may still be ambulatory with the use of walking aids such as sticks or frames. FA can also cause abnormalities in the muscles of the heart so cardiac problems are a common complication of FA.
Stretching - to help relieve tight muscles and help reduce the onset of postural deformities such as scoliosis.
Strengthening exercises for lower limbs - a tailored exercise program to maximise function and independence. Individuals with FA who remain ambulatory benefit from strengthening exercises in the lower limbs and training aimed to improve ataxic gait patterns. This can include training focusing on gait including visual cueing to help facilitate a more efficient pattern.
Strengthening exercises for upper limbs - low intensity strengthening for the upper body should also be incorporated into an exercise program to maintain function. Upper limb strength training can be especially helpful for non-ambulatory individuals to increase their function and mobility in their wheelchair and increase independence.
Stabilising exercises - for the trunk and lower back can help maintain posture for both those who are ambulatory and non-ambulatory. Core exercises are especially important for those who require the use of a wheelchair.
Balance and coordination exercises - using visual feedback can also be helpful to maintain function and independence to improve activities of daily living. It is important that these exercises be functional in nature to allow the client to be more independent at home ie: cooking, eating, bathing and transferring.
Light cardio exercises - to help maintain a healthy weight and improve cardiovascular fitness.
An exercise program including the above mentioned exercises will be beneficial to individuals with FA to manage their symptoms and help maintain function and increase independence to improve quality of life. It is important when starting an exercise program that fatigue is closely monitored and that all exercises are performed in a safe environment to minimise injuries.
Our thanks to Sporting Wheelies in Brisbane for this article. Sporting Wheelies and Disabled Association have a gym facility at Milton in Brisbane that is wheelchair accessible and focuses on fitness and rehabilitation for people with all abilities. The gym includes a wide variety of standard and modified equipment such as wider and lower benches for easy transfer and removable seats on some equipment for easy access for wheelchair users. Sporting Wheelies also offers a personal training program that focuses on functional rehabilitation. For more information on becoming a member of Sporting Wheelies please contact them on (07) 3253 3333, email: gym@sportingwheelies.org.au or visit their website: http://www.sportingwheelies.org.au
Physiotherapy in FA, a video presentation
This video presentation is about 30 minutes total. I had to edit it to 6 x 5 minute videos so each would be within YouTube’s size limit. Watch them in order to get the full presentation.
Gail Wickham is a Titled Physiotherapist and runs the neurological physiotherapy facility at ACU in Banyo, QLD. She’s an accomplished educator so is knowledgeable about physio in general, but Gail also has specific experience with FA clients.
You should watch these videos, have your physio watch them, your trainer, anyone involved with your physical wellbeing… your doctor even.
You can reach Gail directly at: gail.wickham@acu.edu.au, (07) 3623-7740, or ACU Health (Physiotherapy), PO Box 456, Virginia, QLD 4014.