# Exercise as it relates to Disease/Exercise creating a better quality of life for people with Spina Bifida

Spina Bifida (Latin for split spine) is put into a category of birth defects which affects the neural system (called neural tube defects), When the vertebrae develops they close together in order to protect the spinal cord, in Spina Bifida certain vertebrae don’t close over and therefore the spinal nerves can then come through the gaps and damage occurs. This damage results in many different effects depending where the nerves are damaged. The damage often results in muscles, organs and bodily functions below this damage being effected. Spina Bifida can be broken down into three categories, Occulta, Meningcele and Myelomeningocele. Occulta means hidden and is often undetected, people can go through life without even knowing they have it. Occulta is often seen as birth marks or patches of hair growing around the head or along the spine. Meningocele is the least common and occurs when instead of the nerves moving through the gaps the meninges fill the gap and therefore there is no nerve damage although there may be some effects do occur. The last is Myelomeningocele which is the most common and most significant, the most damage occurs in this condition.

##### How does it occur?

Spina Bifida often develops with the lack of folate and the use of anti-epileptic drugs in the diet of the mother, although the direct cause is unknown. A mother with a child that already has Spina Bifida has a 70% chance of having another child with the defect, same goes for if the mother has Spina Bifida or a close family member has the defect With this being the case it is said that genetics have a major role in the development of Spina Bifida.

##### When is it detected?

Spina Bifida is often detected within the first 18 weeks of pregnancy with the use of highly developed ultra sounds and blood tests. Early detection is best as a plan can be developed and this can give the child the best start at life. There are options to help, surgery is often the most common in order to protect the nerves from infection, the nerves are moved into the correct places and the gaps closed. This surgery doesn't reverse the nerve damage that has already occurred but prevent more.

## Explanation of the Issue

The damage to the nerves results in many different effects depending where the nerves are damaged, Spina Bifida occurs most often in the lumbar or sacral spine, this results in muscles, organs and bodily functions below this damage being affected. Surgery on feet and legs is not uncommon and this can help with some movement, even with these surgeries a walking aid or wheelchair still may be needed. With the muscles being affected the person may have problems such as:
* Osteoporosis of bone and muscle atrophy can occur due to lack use
* Edema – Swelling in the legs as muscles movement is used to promote blood flow back up the legs
* Ulcers or sores from sitting in a chair too long and too often
* High fatigability of active muscles due to lack of size and blood flow
* Incontinence can occur due to weakness in the muscles along with a lack of feeling

##### Barriers to physical activity

Most people with Spina Bifida do not feel they are able to be physically active and this increases the chance of obesity and other health risks. There are many reasons why people may not feel like they are able to be physically active or even be around other people. One reason may be incontinence as found to be the case, a person with incontinence has a lower self-concept which can effect whether someone may be able to exercise. Incontinence is not the only effect of Spina Bifida that can make physical activity to be a difficult task. Although if the person is able to even do a little physical activity it is seen to have many benefits, the main being:
* Improved fitness confidence and coordination
* Maintain muscles, increase strength and improve bone density
* Prevent obesity
* Provide opportunities for friendships, independence and improved self-esteem
* Prevent constipation

## Recommendations

“Increasing exercise capability and cardiopulmonary fitness with specific arm exercise programs could increase organ system reserve and make activities of daily living less stressful since they would be performed at a lower percentage of maximal capability”
There have been many studies into what exercises are of the most benefit to people with Spina Bifida, most look at physical activity for children as the earlier you start the better you will be. Creating good habits at an early age. One study which showed the most benefit was the use of voluntary arm exercise and functional electrical stimulation of lower limbs can give a greater training affect due to greater muscle mass, metabolic and cardiopulmonary responses. Increased venous return and enhanced blood flow to the upper body.

##### Physical Activity Recommendations

The national centre for health, physical activity and disability (NCHPAD) and the American College of Sports Medicine (ACSM) have developed recommendations for physical activity for people with Spina Bifida. Below are things that should be taken into account when undertaking physical activity.
* HR may not be used as the autonomic sympathetic output may be diminished. Therefore the heart rate doesn’t respond to physical activity as a healthy person would. Temperature may also react differently so this is another which should be monitored the whole way through
* 20-60 mins without excessive fatigue – The time may vary depending on the fitness, fatigue must monitored because when fatigue kicks in the person is likely to not gain anything rather may lose any training effect. The time may vary although a long warm up is also to be included.
* 2-5 times per week - depending how they recover between sessions
* Pressure sores and transfers – from sitting in a wheel chair most of the time, sores can develop, different exercises can be used to decrease the risk of getting these sores. Transfers is just one way, practice moving out of the chair onto another, onto the floor or even moving to walking aids where seating is not needed
* Osteoporosis – with the lack of weight on the legs osteoporosis can develop. Along with osteoporosis swelling may occur in the lower legs due to lack of movement therefore movement or raising the legs may help with this.
* Balance the body and Posture – those who sit in wheel chair often have a Kyphotic curve in the back due to the muscles used to move the wheel chair and a slouched position can occur. This can be corrected or helped with physical activity and when doing the front of the body the back should be included.
* Maintain range of motion – in maintaining range of motion allows to joints to move to best of their ability especially since there may only be a minimum range that is possible. In maintaining range of motion it also prevents such things as spasticity occurring

## References

* ↑ Spina Bifida, version 9, Department of Education and Communities and The Children’s Hospital at Westmead., 2011.
* 1 2 Better Health Channel, http://www.betterhealth.vic.gov.au/bhcv2/bhcarticles.nsf/pages/Spina_bifida_explained., 2013.
* ↑ Obesity: Another Hazard for Spina Bifida children, Tring, M, C, Hayes-Allen and F, C., 1973.
* ↑ Courtenay Moore, Barry A. Kogan and Ashish Parekh, Impact of Urinary Incontinence on Self-concept in Children with Spina Bifida, Journal of Urology., 2004, 1659-1662.
* ↑ Kidshealth.schn.health.nsw.gov.au, Be active with Spina Bifida | Kids Health @ CHW, [online] http://kidshealth.schn.health.nsw.gov.au/fact-sheets/be-active-spina-bifida, Accessed: 22 Oct 2013
* ↑ Glaser, R. M. (1989). Arm exercise training for wheelchair users. medicine and science in sports and exercise, 149-155.
* ↑ Hendrika J. G. van den Berg-Emons, J. B. (2003). Body Fat, Fitness and Level of Everyday Physical Activity in Adolescents and Young Adults with meningomyelocele. Rehabiliation medicine, 271-275.
* ↑ NCHPAD. (2013). National Center on Health, Physical Activity and Disability. Retrieved from http://www.ncpad.org/222/1443/Spina~Bifida~-~Physical~Activity~Guidelines.
* ↑ Van Den Berg-Emons, H., Bussmann, J., Meyerink, H., Roebroeck, M. and Stam, H. 2003. Body fat, fitness and level of everyday physical activity in adolescents and young adults with meningomyelocele. Journal of rehabilitation medicine, 35 (6), pp. 271--275.

##### Further Reading and Information Sources

* Shurtleff, D., Walker, W., Duguay, S., Peterson, D. and Cardenas, D. 2010. Obesity and myelomeningocele: anthropometric measures. The journal of spinal cord medicine, 33 (4), p. 410.
* Castree, B. and Walker, J. 1981. The young adult with spina bifida.. British medical journal (Clinical research ed.), 283 (6298), p. 1040.
* Widman, L., Mcdonald, C. and Abresch, R. 2006. Effectiveness of an upper extremity exercise device integrated with computer gaming for aerobic training in adolescents with spinal cord dysfunction. The journal of spinal cord medicine, 29 (4), p. 363.
* Buffart, L., Roebroeck, M., Rol, M., Stam, H. and Van Den Berg-Emons, R. 2008. Triad of physical activity, aerobic fitness and obesity in adolescents and young adults with myelomeningocele. Journal of Rehabilitation Medicine, 40 (1), pp. 70–75.
* Williams, E., Broughton, N. and Menelaus, M. 1999. Age-related walking in children with spina bifida. Developmental Medicine \& Child Neurology, 41 (7), pp. 446–449.
* Aihw.gov.au. 2013. Neural tube defects in Australia (AIHW). [online] Available at: http://www.aihw.gov.au/publication-detail/?id=6442468181 [Accessed: 22 Oct 2013].
* Trust, M. 2013. Functional electrical stimulation (FES) | Factsheet | MS Trust - Information, education, research and support. [online] Available at: http://www.mstrust.org.uk/information/publications/factsheets/fes.js