Periods of feeling down about having primary lateral sclerosis are expected and normal. Dealing with the reality of an incurable, progressive disease can be challenging. To cope with the disease and its effects, consider these tips:
July 12, 2013
Seek emotional support. Family and friends can be great sources of comfort and support when you're wrestling with the emotional aspects of long-term disease.
Because primary lateral sclerosis is an uncommon diagnosis, it might be a challenge to find a local support group for people with your condition. However, some online discussion groups are available, and it may be helpful to see how others have coped with the disease.
- Get professional help if you need it. When faced with a chronic illness, it's not unusual to become overwhelmed at times. Seek out professional counseling for another perspective, or if you're struggling with depression and need advice on treatment.
Know and use resources available to you. If you reach a point where your disease is restricting your activities significantly, ask your doctor about devices designed to help you stay independent.
In addition, there are social services available to people with disabilities of all kinds. Try to learn all you can about the resources available to you. Sometimes relying on your community for help can strengthen ties in new ways.
- NINDS primary lateral sclerosis information page. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/primary_lateral_sclerosis/primary_lateral_sclerosis.htm. Accessed April 23, 2013.
- Daroff RB, et al. Bradley's Neurology in Clinical Practice. 6th ed. Philadelphia, Pa.: Saunders Elsevier; 2012. http://www.mdconsult.com/books/about.do?about=true&eid=4-u1.0-B978-1-4377-0434-1..C2009-0-40427-6--TOP&isbn=978-1-4377-0434-1&uniqId=364938937-2. Accessed April 29, 2013.
- Singer MA, et al. Primary lateral sclerosis. Muscle and Nerve. 2007;35:291.
- Juvenile primary lateral sclerosis. Genetics Home Reference. http://ghr.nlm.nih.gov/condition/juvenile-primary-lateral-sclerosis/show/. Accessed April 29, 2013.
- Brugman F, et al. Adult-onset primary lateral sclerosis is not associated with mutations in the ALS2 gene. Neurology. 2007;69:702.
- Neurological diagnostic tests and procedures. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm. Accessed April 29, 2013.
- Motor neuron diseases fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/motor_neuron_diseases/motor_neuron_diseases.htm. Accessed April 23, 2013.
- Almeida V, et al. Primary lateral sclerosis: Predicting functional outcome. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2013;14:141.
- Iwata NK, et al. White matter alterations differ in primary lateral sclerosis and amyotrophic lateral sclerosis. Brain. 2011;134:2642.
- Treatments and therapies. Spastic Paraplegia Foundation Inc. http://sp-foundation.org/understanding-hsp-pls/treatments-and-therapies/. Accessed May 1, 2013.