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    • #17926
      Amanda
      Keymaster

      BioNews hosted an event last week end on mental health. In our discussions, one of our participants made a great comment. She is a medical student and she said, “Learning to live with a illness is a skill.”  This statement resonated with me.  I believe that when a person is diagnosed with an illness (such as ALS) they go through a cycle, similar to the grieving cycle https://www.verywellhealth.com/dabda-the-five-stages-of-coping-with-death-1132148

      After spending a few days thinking about her statement I think it includes coming to terms and accepting a Rare Disease diagnoses is essential to living a mentally healthy life and being able to focus on the here an now. Enjoying everything you can and focusing on what you CAN do improves a person’s quality of life.

      What do you think? What do you think impacts a person’s reaction to a Rare Disease Diagnoses? Are there skills involved? How do you improve your resilience?

    • #17931
      Nancy Gilkeson
      Participant

      Just thinking…..

      Amanda, it makes sense to me, that skill (or lack of) would be involved in this major life adjustment.  I think of  parenting skills, social skills, caregiving skills etc, which help us maneuver thru learning to live well in our individual lives.  Some skills seem a “natural” with one individual while hard work for another and are not necessarily mechanical or physical.   It seems that a “skillful wisdom” can be shared through awareness/learning, practice and hope/purpose.  I have picked up some “skills” here (ALSnewstoday) and am practicing them.  (example:  stretching & exercising fingers; mindfully focusing on living; searching for positive purposes).

       

      • #17950
        Amanda
        Keymaster

        @Nancy, I like the way you think.

    • #17948
      Anonymous
      Inactive

      Adapting to change is a huge skill. Some people just do not take change very well in day to day living. The change that ones life takes when they find out that they have ALS is huge, and much bigger than typical change. From the time my brother was diagnosed to the day he passed it was just over 90 days, 3 months. He never had a chance to adapt, let alone to meet the challenges, because it was so quick. By the time he got an electric wheel chair it was too late to use it. Other people like Stephen Hawkins lived with ALS for over 50 years, and was well adapted to the changes. It is even harder to keep from getting depressed sometimes because of all the changes ALS forces on us. Family helps, sometimes. This new age we live in has changed families also, spreading us far apart.

      Dealing with change truly is a skill that should be developed.

    • #17949
      Kathy stitz
      Participant

      I’m assuming that the person who made this statement does not have ALS or another terminal condition.   Thus, they have no concept of what it is actually like to live with it and the suffering pALS experience every day.  That being said, I agree with John that ALS is a life-changing diagnosis and requires skills to be able to cope with the challenges it presents.   It’s hard to fear what your future will be like or if you will even have a future at all.  Acceptance is important and also not blaming yourself for what has happened to you.  The way you have coped with adversity in the past can help you in this difficult time and give you confidence in coping with having ALS. It’s hard to enjoy each day since it’s hard to even make it through each day.  You have to have a lot of emotional strength to cope with the depression and anxiety that pALS experience.   This is why I admire pALS, for their courage and strength despite having this horrible and devastating diagnosis.

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