Coping with the “New Normal” after an ALS Diagnosis

Everyone responds differently when life throws him or her a curve ball, and an ALS diagnosis might be the fastest curve ball life has to offer.  Some respond by “hitting that ball back” and go on with life fairly quickly, while others may need more time to adjust to the news and come up with a plan.  There is no right or wrong way to feel when faced with this diagnosis.

Most of us have heard about the stages of acceptance, grief and loss.  These stages describe different reactions one might have, including denial, anger, bargaining, depression, and ending with acceptance.  Acceptance does not mean giving up on hopes or dreams.  It should be the first step in making the most of life with ALS.  There is much to be done to help someone live a fuller and enjoyable life.

The following tips, adapted from Neurology Reviews: October 2010, may help someone cope with ALS:

  • 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. Attitude is everything.  Try to remain hopeful. Be positive. Don’t let ALS take away your 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, other professionals on your healthcare team, and family can help with healthcare decisions, but remember that you are in charge throughout your illness.  Don’t let others dictate your care. If you healthcare provider hasn’t already done so, request that he or she refer you to the nearest ALS clinic.  Your providers will also be able to help you in other ways in the future, such as signing your application for disability and social security benefits.
  • 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 Resource/Support Group. You don’t have 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.
  • Plan Ahead. Planning for the future allows you to be in control of decisions about your life and your care. Work with your healthcare team 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 Aging with Dignity for more details on living wills and Five Wishes.  You may also want to consider formalizing advance directives and assigning power of attorney.

The information from this blog post was excerpted from the Living with ALS Resource Guide: After the Diagnosis: Coping with the “New Normal”.

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