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Coping and support
By Mayo Clinic staffPeriods 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:
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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 ways you haven't considered.
- 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 Aug. 17, 2010.
- Juvenile primary lateral sclerosis. National Institutes of Health Genetics Home Reference. http://ghr.nlm.nih.gov/condition=juvenileprimarylateralsclerosis. Accessed Aug. 16, 2010.
- Murray B, et al. Disorders of upper and lower motor neurons. In: Bradley WG, et al. Neurology in Clinical Practice. 5th ed. Philadelphia, Pa.: Butterworth-Heinemann Elsevier; 2008. http://www.mdconsult.com/book/player/book.do?method=display&type=bookPage&decorator=header&eid=4-u1.0-B978-0-7506-7525-3..50116-3&displayedEid=4-u1.0-B978-0-7506-7525-3..50116-3--cesec19&uniq=215117994&isbn=978-0-7506-7525-3&sid=1040472768. Accessed Aug. 16, 2010.
- Brugman F, et al. Adult-onset primary lateral sclerosis is not associated with mutations in the ALS2 gene. Neurology. 2007;69:702.
- Tartaglia MC, et al. Differentiation between primary lateral sclerosis and amyotrophic lateral sclerosis: Examination of symptoms and signs at disease onset and during follow-up. Archives of Neurology. 2007;64:232.
- Gordon PH, et al. Clinical features that distinguish PLS, upper motor neuron-dominant ALS, and typical ALS. Neurology. 2009;72:1948.
- Hadano S, et al. Molecular and cellular function of ALS2/alsin: Implication of membrane dynamics in neuronal development and degeneration. Neurochemistry International. 2007;51:74.
- Motor neuron diseases fact sheet. National Institute of Neurological Disorders and Stroke. http://www.ninds.nih.gov/disorders/motor_neuron_diseases/detail_motor_neuron_diseases.htm. Accessed Aug. 17, 2010.
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