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University of Pittsburgh

Coping with ALS

Coping with a chronic illness, such as ALS, can become quite emotionally draining for patients and their families. The thought of losing physical function combined with financial concerns and quality of life issues can compound and create additional stress. The MDA-ALS Center at UPMC is available to provide support for people with ALS and their families.

Social workers and nurses provide personal support to people with ALS and their families by offering:

  • Referrals for ongoing counseling.
  • Recommendations of community resources and local and national agencies that offer both information and support for ALS.
  • Financial resource information.

TIPS for Coping With ALS (from Neurology Reviews: October 2010)

  • Take Time to Adjust. Being diagnosed with ALS is nothing less than shocking. Take time to absorb the information and understand what to expect. Allow yourself time to work through emotional reactions such as denial, anger, sadness and grief.
  • Be Hopeful. Your attitude is everything. Try to remain hopeful. Don’t let ALS take away your intellect, personality, or spirit. Don’t let your illness define who you are. Try to think of ALS as only one part of your life, not your entire identity.
  • Think Beyond Physical Changes. You can look at ALS as a slow death or as an opportunity to enrich your life and make the most of the time you have – time to foster deeper connections with family and friends and broaden your spiritual awareness.
  • Seek Early Treatment. Many symptoms can be reduced with simple treatment. Often these treatments can ease the effects of disease progression. Ignoring manageable problems can make a difficult situation worse.
  • Take Charge of Your Care. Physicians and other professionals on your health care team, hospice, and family can help with health care decisions, but remember that you are in charge throughout your illness. Don’t let others dictate your care.
  • Engage Family and Friends. Life with ALS can trigger overwhelming emotional reactions. Keep lines of communication open, so that you are comfortable expressing your feelings. Encourage your family and friends to express their feelings as well.
  • Join a Support Group. Don’t think that you need to face this alone. You can get a lot of support and useful information from others who have faced this disease. Your family and friends may also benefit from a support group devoted to caregivers. The MDA and ALS Associations have support groups.
  • Plan Ahead. Planning for the future allows you to be in control of decisions about your life and your care. Work with your doctor, hospice, and family to formulate plans for life-extending treatments and end-of-life care. Make a living will and discuss it with your family. See http://www.agingwithdignity.org/ for more details on living wills and Five Wishes.  This is a newer form which is simpler and is available on the UPMC website at http://www.upmc.com/patients-visitors/patient-info/advance-directives/Documents/pa-advanced-directive.PDF.

 

Financial Resource Information

Depending on individual financial capabilities, some people with ALS may be eligible for certain government programs. The government provides programs for people who are disabled and are unable to work:

State and Federal Programs

  • Social Security An individual may qualify for one of a number of programs: Medicare, Medicaid, In Home Supportive Services (IHSS), Supplemental Security Income (SSI), Food Stamps, Tax Relief for Seniors, and/or Income Assistance. General information can be obtained by calling (800) 772-1213 or your local Social Security office.
  • Social Security Disability—eligibility and amount covered is determined by each individual’s work history. Information can be obtained by contacting the nearest Social Security Office. ALS patients are given fast-track status (<6 months). Ask us for a diagnostic statement.
  • Supplemental Security Income—this program is based on the type of a person’s disability and their income/assets. This is a program primarily for people who do not have a work history with Social Security. Information can be obtained by contacting the nearest Social Security office.
  • Pennsylvania Office of Vocational Rehabilitation (OVR)— OVR is a state agency that helps persons with disabilities help themselves to maintain a career. OVR has fifteen offices located around the state with over 400 rehabilitation counselors. Some of the services include job site modifications, automobile modifications, and home modifications. These services are intended to enable you to maintain employment and achieve independence. If you would like to apply or receive more information, please call: Pittsburgh office (800) 442-6371; New Castle office (800) 442-6379; Johnstown office (800) 762-4223, or Washington office (800) 442-6367.