• This topic has 14 replies, 11 voices, and was last updated 5 months ago by Anonymous.
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    • #17510
      Amanda
      Keymaster

      Keeping a positive attitude can be difficult, especially during a pandemic!  Add in ALS and it may seem next to impossible.  Of course ALS is devastating news and no one is expected to be upbeat and happy all of the time.  We do know that research shows that your mental health impacts your physical health.  It is natural to be overwhelmed, scared, and frustrated as your body changes with ALS. Do you have tips or ideas you can share with our community on how to try and stay positive?

    • #17514
      Kathy stitz
      Participant

      I don’t really know how this is possible when you are sick and suffering all of the time.  Also when there is no cure for this and you know you are just going to get worse.  I suppose just being grateful for family and friends and things you are still able to do. It’s hard to find things to be positive about when life is so difficult.

    • #17518
      Cindy
      Participant

      I was deemed to be a slow progresser. Lucky and hopeful for treatments and a possible cure kept me optimistic for 4 years even having lost use of my legs. In my 5 th year my arms hands and fingers are going as well as my diaphragm so breathing difficult. I want to hold out hope for treatments but I’m afraid nothing short of a miracle will help. I pray for Gods mercy now. Suffering is noble but how long is my plea now.

    • #17525
      Chuck Kroeger
      Participant

      I totally understand Cindy’s point of view as I’ve pretty much lost ability to walk or use arms and my diaphragm is about gone.  Been on trilogy for over year.  you can’t scratch that itch or rub that tickle.  And you just watch people around you that have to set aside their lives to take care of you.    it’s tough..    Want to be optimistic and hope that a cure is found that will reverse what has happened to my body, But it’s hard to hold out hope.  I’m just ready for Jesus to take me home

    • #17535
      Cindy
      Participant

      Chuck I’ll pray for you.today I saw a PAL I met at infusions 3 years ago. She’s further along than we are but keeps that smile going. I want to know her secret.

    • #17875
      Isabelle Z
      Participant
      1. If we could see that death is a logical way continuing life and that our way with als is a way like any other way with illnes, to go on this way, slowly and thinking about what happens, perhaps it could help. I mean : not considering death like a tabou. My man has died very suddenly and i think he had no time to feel the real weight of life, when you have this time, it is perhaps a gift that make possible that you really feel the value of your Live (excuse
      2. my english…)
    • #17909
      Nina
      Participant

      I am exactly where you are Cindy. I am wishing now that I was not a slow progresser! I try to focus on what I am thankful for and to keep staying in contact with friends and family. They uplift me.

    • #17952
      Anonymous
      Inactive

      If we resign ourselves to death, then we stop living. Stephen Hawking wrote 134 books before he passed. He did not accept that his life was over, but instead, became a super-hero. Not many of us will live for 52 years like he did, but we can take his example and live the best we can. Do what you can with what you got. Live every moment and enjoy it! I am the shinning light on the hill, follow me. When we step across that plane that divides this life with the next, you will understand.

       

       

      • #17963
        Amanda
        Keymaster

        John, I love it!!  Yes, we should live the best life we can.

    • #17954
      Allan
      Participant

      What it is to remain calm in such a situation, I can not imagine, everything seems absolutely meaningless. It is impossible to maintain a positive mood without antidepressants. How people deal with it.

      • This reply was modified 6 months, 2 weeks ago by Allan.
      • This reply was modified 6 months, 2 weeks ago by Allan.
      • #18001
        Anonymous
        Inactive

        Hello Allan,

        I let all my thoughts run on and on. They are depressing and I came to realize that if I let all that is negative about ALS affect me that way, then it is not going to give me any peace. I find that silence is very good. I find serenity is nothingness so to speak. And peaceful sounds of the environment also take me there. Hearing birds flutter and chirp, a bee flies by. The caw of a crow and the scream of a hawk makes everything react. Even butterflies make noise if you listen to them closely. It all starts in silence and then, when it passes, silence again.

        Fear has no place when I find serenity. Some folks never find that peace, and I know that it took me some time to understand that this is where I chose to be. It calms me, slows my heartbeat, and I relax from head to toe. I live in the moment. When stress and anxiety try to get the best of me I become mindful of how I feel, and ask if that is what I want to feel. Naturally, I do not want those feelings, and I chose to find my serenity instead. Now, I find serenity anywhere and everywhere. Just knowing what it is, listening to silence for a moment, and the things that are naturally around me, knowing that in this moment, there is a peace that I can chose to have instead of stress…anxiety and fear.

    • #17958
      David Crellin
      Participant

      I wish I had the secret. But I haven’t. I’m just a stupidly optimist person.

      From aged 13 to 17 I nursed my mum to her death aged 49 with ALS.  I still remained stupidly optimistic. Then aged 23 I was diagnosed with probable thyroid cancer (I was born 20 Oct 1957 5 miles north of the biggest nuclear reactor fire until Chernobyl). It was excised and found to be benign. A reason for optimism? Then in 2012 I was diagnosed with a malignant  melanoma and had a chunk cut out of my right arm. That frightened me. But three years later I was told my immune system had attacked and reduced the tumour  – reason for optimism?

      Then the diagnosis I didn’t want –  ALS. Guess what. I’m still stupidly optimistic. Why? I wish I knew.

      PS As someone brought up in an extreme evangelical sect in the UK, and having rejected that faith as an adult, I beg people not to use religious platitudes. None of us knows what awaits us. Faith is the substance of things hoped for: the evidence of things not seen.

      • #17962
        Amanda
        Keymaster

        David, your optimism is admirable! I know that each pALS and their family respond to ALS differently. Some are able to keep a positive attitude and hope, while others struggle.  I’m sure most pALS have good and bad days.  David, please continue to campaign and have hope!! People like you will help make a difference.

    • #17964
      Nancy Gilkeson
      Participant

      I appreciate every comment I’ve read above…the honesty, whether upbeat or downcast at this moment, is such an encouragement in that not one person is left alone in their thot or feeling.  We are such “fluid” feeling & thinking beings, and any one day may differ from another, in “happenings,” and  how I see & respond to them.  Having very few answers, I appreciate  your shares, and want to come here, to learn from & with you.

      Thank you….Amanda, Kathy, Nina, Isabelle, Cindy, Chuck, John, David, and Allan.   Your being here is meaningful to me and Im sure others who are “listening”.

      • #17969
        Amanda
        Keymaster

        Nancy, thank you for your input and sharing. Our members are amazing and supportive.  Having ALS is a dreadful experience as every pALS knows. And, of course, pALS are not expected or capable of being positive all the time.  That would be impossible even without ALS in the picture!!!  It is a roller coaster and since there is not cure it’s a balancing act at times when it comes to emotions and feeling.  What I want for our entire community, other than a cure of course, is for each pALS and their loved ones to live the best life they can, enjoy everything that they can and find comfort, support and joy in both expected and unexpected places.

    • #18296
      Trevor Bower
      Participant

      I can completely understand the struggle to keep positive. I’ve struggled for eight years with an “unknown issue” that slowly decreased my ability to walk. I’ve had every neurological test known to the best neurologists at Duke.  Dr. Bedlack finally enrolled me in the Undiagnosed Network, UDN. The UDN group could not come up with a reason why my legs kept getting weaker. Finally last December I received the Diagnosis.  They believe I have a variant form of ALS. It doesn’t show up on the genetic tests.  Devastating!  Right away, I want to see what testing and research is on going?  What shows promise? Should I try to participate in a trial? Is it safe? Are there dietary modifications I could make, I have Celiac sprue,  to slow or reverse the progression of ALS?  So many questions.  I’m sure I’m not alone. Where do I go next.?

    • #18527
      Dagmar Munn
      Keymaster

      Here is an inspiring quote from the MDA website:

      What advice do you have for those living with neuromuscular disease, especially during a difficult time of change?

      Above all else, it is important to remember that many families affected by NMD live fulfilling, happy lives and find ways to be resilient despite adversity. It is totally normal to have low moments or even low days in times of stress, so validating a range of emotions without judgment and just being a great active listener to those who are struggling can go a long way. It is important to find social support, communicate openly, be willing to try new things that may help, and try to look out for those “silver linings” that are often tough to see at first.

      • #18528
        Anonymous
        Inactive

        So true Dagmar.

        What we have is free will, our choice to live life the way we can. Choosing to dwell on depression (pessimistic) or be optimistic is like a river with a strong current. If we choose to go against the flow, and dwell on depressing thoughts, we will become miserable. If we choose to go with the flow and dwell on things that make us happy, we can avert misery to a degree.  The fact that we have this diagnosis cannot and should not be ignored, but we must exert effort to live with it the best we can.

        Anyone can refuse treatment, and for some it is totally justified. My brother dropped so fast because of Bulbar ALS that his reality came swift and without mercy. It took him 3 months to go from a diagnosis to a locked in state, and that is scary.  I have been just the opposite. It took them almost 4 years for my diagnosis, and approaching 6 years now progression is very slow. The outlooks of each of us as individuals will change based on a quality of life that promotes or inhibits happiness. Not that I know everything that can happen, because I learn a lot from people in the forums, but scraping together information opens my eyes to wide variety of experience that we all go through.

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