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    • #17214
      Kathy stitz
      Participant

      As 2020 comes to a close, what will you remember the most about this year? Looking ahead to 2021, do you make New Year’s Resolutions? Will you make any changes in your life in 2021?

    • #17258
      Kathy stitz
      Participant

      This year has been a horrible year for many people.  One thing I will remember the most is the coronavirus.  It has affected everyone in some way.  It has been heartbreaking to hear of all the deaths from this virus.  People have been unable to afford food and to pay their rent and people have lost their jobs.  We have all had to change the way we live by wearing masks, socially distancing, and washing our hands more frequently.

      On a personal note, this was the year I was diagnosed with ALS.  I have also had health issues in the past but this one has probably been the most challenging and devastating health issue I have faced. I have appreciated the help and support I have received on these forums. As far as New Year’s Resolutions, I don’t really make them.  I just hope I am still alive next year.

    • #17283
      Kathy stitz
      Participant

      Any other responses?

    • #17296
      Janice
      Participant

      Thank you for this forum. I realize now how many people have ALS. I never would expect these symptoms but in my body they are now swelling muscles. I can still walk and do my chores but wonder how much longer can I exist.

    • #17297
      Kathy stitz
      Participant

      That wasn’t an answer to this particular question but I do agree with you in terms of still being able to walk but wondering how much longer this will be possible.

    • #17301
      Carolyn Barry
      Participant

      Like you Kathy, I too have a significant memory of 2020 of being diagnosed with ALS, in October.  I was quite relieved to get an answer for the symptoms I experienced beginning in February.  Though ALS is not what I expected, I was very grateful to be home when I found this out.  My 2 months being hospitalized and in rehab, gave me a wonderful appreciation of being back home and seeing my family again, as I wasn’t allowed even one visitor during that long period of time.  I try to keep things in perspective, as best as I can, though I know I could always make better efforts towards looking for the good.  I hope 2021 is a better year for everyone!  I am thankful for each person on these forums, as we share a common bond.  And thank you very much Dagmar and Amanda, for being such wonderful moderators!  All you do is much appreciated and makes a huge difference in my life!

    • #17302
      Kathy stitz
      Participant

      Thanks for your response Carolyn.  For me, sometimes I feel like I would rather not know I have ALS since it has such a poor prognosis and is fatal.  Now I’m just always fearing death.  I have been very depressed, angry, and irritable since being diagnosed with ALS.  It has been disappointing because there is no cure and the doctors can’t really do very much for people who have this.  I am also thankful for the other forum members as well as Dagmar and Amanda.  It’s helpful to share our experiences and provide advice and support for each other.  I hope 2021 is better for all of us who are suffering so much.

    • #17307
      Isabelle Z
      Participant

      Pour moi aussi, c’était l’année du diagnostic avec en plus la privation de contacts sociaux à cause du Covid. Année difficile, j’y ai aussi perdu mon mari. Mais le plus difficile c’est ce passage de 2020 à 2021, que se dire cette nuit? Courage les amis de peine, nous sommes tous solidaires sla

      translation:

      For me too, it was the year of the diagnosis plus the deprivation of social contact because of the Covid. Difficult year, I also lost my husband. But the most difficult thing is this passage from 2020 to 2021, what to say to each other tonight? Courage friends of pain, we are all united sla

      
      

       

      
      
      		
      	
    • #17311
      Mary Tiknis
      Participant

      This was the worse year of my life. Being diagnosed with ALS has been devastating.
      I am thankful to Dagmar and Amanda for this forum that allows us to know we are not alone. Dagmar’s book Align Lengthen Strengthen has given me hope and guidance through this awful time in my life. Thank You

    • #17309
      Kathy stitz
      Participant

      Isabelle, thank you for your post.  I’m so sorry that you lost your husband this year.  I can’t imagine how difficult that must be.  Stay strong and best wishes to you as well as to all of the participants on these forums.

    • #17312
      Kathy stitz
      Participant

      I agree with you, Mary, and hope that 2021 is a better year for all of us.

    • #17454
      Dagmar Munn
      Keymaster

      When reflecting on the past year’s events of course it’s easy to list all the rough spots, but can you also create an equal list of good things that happened? I believe that it is important to be able to do both. Especially for those of us living with ALS – – we have to work at changing our thinking from noting every little darn thing that ALS is causing in our lives and instead, rise above it all and look for the moments when we can say, “OK, that went well.”

      Why? Because our bodies respond to what we are thinking. I’d rather cultivate feel-good endorphins than stress-produced cortisol hormones to circulate to and through my nerves and muscles.

      Can’t think of several good things that happened to you this year? Then, how about just one? For a good example, I invite you to read my recent column, “Talking My Way Through 2020.” In it share how I was able to meet the challenges of 2020 and “save my voice.”

      So, even though 2020 had a lot of negatives, let’s also remember the positives.

    • #17459
      Duane
      Participant

      Well said, Dagmar.  It’s all about how we react to adversities.  We pALS have to essentially rely on ourselves to keep things together.  It helps to have a balanced approach and not just consider the worst.  Some of us live quite awhile like Dagmar at 10 years, and myself at 14 years.  Why is that?  Granted, some of us have a very aggressive form of this disease and that is unfortunate.  While others have a lesser form and can live quite awhile with it; in that case it largely depends on one’s mental attitude.

    • #17462
      Kathy stitz
      Participant

      Dagmar and Duane, that’s wonderful that both of you have lived for so long after being diagnosed with ALS.  Maybe you view things from a different perspective than other pALS.  Both of you know you have already lived for at least 10 years with this condition.  For other pALS, how long they will live is a lot less certain.  Maybe they won’t even live for 1 year after being diagnosed with ALS.  I don’t know how much having a positive mindset influences how long you can live with a terminal illness.  I suppose it doesn’t hurt.

      • #17467
        Dagmar Munn
        Keymaster

        Yes, Duane, and I do have a different perspective – – a positive perspective. And we’re not alone, in that a positive mindset does make a difference as far as ALS is concerned. Research proves it.

        A 2019  study of 224 ALS patients, found that participants who had good emotional well-being experienced a slower progression of their disease. Yes… slower progression! To me, anything that is proven to slow down symptom progression is something that will help me to live longer.

        Patients with good emotional well-being were characterized by better physical function (higher ALSFRS-R) and lower disease aggressiveness. The association between high emotional well-being and lower disease aggressiveness was confirmed in the univariate analysis and also after adjustment for known predictors of disease progression.”

        You can read my column about it here: Want to Slow Down Your ALS? Try Smiling!

        And the link to the study here: https://www.sciencedirect.com/science/article/pii/S240565021930022X#bb0090

        Happiness, contentment, and feeling positive all contribute to our well-being. I know I’ll keep smiling. It might slow things down and give me more time to live well while living with ALS. 🙂

         

    • #17469
      Kathy stitz
      Participant

      I guess my point was more that you know you have already lived for at least 10 years with this whereas, for other pALS, the amount of time they have is unknown and might not be a long time so that is where the fear comes in.  Also when you are younger like I am, that is another reason why people view things differently.

    • #17471
      Marianne Opilla
      Participant

      There are no guarantees in life. Anyone, whether ALS or not, could die today, tomorrow, next year. No matter what age.  The way I see it, I have a 50:50 choice every day that I wake up and still have ALS.  I can be positive or negative.  I eventually decided to always try to show up for life and be positive.  It helps me and those around me.  Enjoy simple things, a sunrise, music, birds in the yard. Read positive scripture or meditation.  Thank your legs for moving or your throat for swallowing for one more day.  No it isn’t easy, but my life was never guaranteed to be easy.

    • #17474
      Kathy stitz
      Participant

      Thanks Marianne.  What you said is very true, anyone can die at any time.  I think this diagnosis has been so overwhelming to me and made me really fearful of death. I have had a lot of difficulty in coping with it.  I know I really need to work on having a more positive mindset.  It’s just so hard for me.  I guess this is hard for some people to understand.  Like you said, it’s important to live each day to the fullest and try to find things to appreciate.  I think my depression and fears have greatly affected my ability to do this.

    • #17479
      Duane
      Participant

      Kathy, we all had a starting point with this disease where we faced the unknown.  The disease is what it is.  As I suggested in the past, you need to stop talking about it, writing about it, as it only increases your anxiety.  You really need to get your mind focused on something complex, like computer coding and programming, or something else like that, and not spend your day chit-chatting about your disease.  This is meant in good will, but it all is up to you.

    • #17488
      Amanda
      Keymaster

      Hello, It’s one of your friendly forum moderators. Please, please don’t argue on the forums.  We have private messaging if you would like to discuss a matter privately with another member.

    • #17492
      Duane
      Participant

      I was not arguing about anything, just stating facts as I have observed them.  I personally dislike both of your attitudes toward me.  I’m sure if I were a woman it would be different.

    • #17495
      Marianne Opilla
      Participant

      There is a good webinar which addresses coping and the brain-stress relationship and it’s affects on health and well being. It shares scientific research evidence of the benefits of positive thinking Dagmar refers to.  This webinar was helpful to me to climb out of my ALS “black hole”.

      everything als.com

      Click on videos from the menu.  Go to August 12,2020.  “Care for ALS: Mind Body and Spirit”.

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