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    • #17985
      Amanda
      Keymaster

      Living well with ALS is a major focus on our forums and for most pALS.  There are so many things that are frustrating and scary for pALS, but I want to ask a hard question!! For our pALS that have had their speech or facial expressions impaired, do people speak to you differently or treat you differently? Do they assume that your cognitive functions are impaired? How do you handle these situations? How can we educate others about ALS and what it impacts?

    • #19585
      Kathy stitz
      Participant

      I think with having ALS and the speaking issues, it makes other people not even want to be around you anymore so then you are just isolated and lonely.   I deal with this in a negative way by being depressed that all of this has happened to me.

      • #19589
        Pepper de Callier
        Participant

        Dear Kathy, I am a pALS, diagnosed about 18 months ago.  My speech is getting pretty bad.  I have customer care people hang up on me when I try to tell them the reason for my calling.  It is an isolating feeling, indeed, but I have something I do every morning that helps me.  When I open the shower door to get in, it’s become automatic that I think about what I am grateful for today.  By doing this, I am not denying my ALS, but I am putting it in perspective.  More often than not, it helps set a more positive mindset for the day.  Someone wiser than I once said that the only thing we have control over in life is our reaction to our circumstances.  This is how I react.  I hope this may give you an idea or two for yourself.  I am learning now, more than ever, the wisdom of living one day at a time.  All the best–Pepper

        • #19637
          Frank Benincasa
          Participant

          I haven’t been diagnosed yet but have many symptoms and it’s “early”. Today I had to go to the supermarket for a prescription and Walked very slowly and had to muster some strength to speak to the pharmacist. I thought exactly about your question. People have to see how I walk, how I talk and what will happen in the coming months. I guess the answer will just have to be, let them if they’re so ignorant. People will always treat you differently. Sometimes they are well meaning and sometimes they might feel you are inconveniencing them. This is why people stay home when they could be going out. People will stare and some may ridicule. People may have thought that I was unsociable at my granddaughter’s graduation last week because I found a seat and stayed there until it was finally time to leave. I had no intention to stumble around and make up something on why I was so hoarse. I really don’t care what they think.

    • #19605
      Astrid
      Participant

       
       When i in my wheelchair, some people   are asking  my husband how i am  doing!      Why do the talk about me  when i am sitting next to them?

    • #19608
      Marianne Opilla
      Participant

      I too have very unintelligble speech 18 months from diagnosis.  I just spent a week with my young grandchildren.  They politely looked at me and nodded when i said something, clearly not understanding a word.  I have a Speech APP that is very helpful and reduces alot of tension on both sides.  (Check with your speech pathologist for recommendations.). Living in a tech world, the kids responded and were relieved when I used the APP.

      I do not make any phone calls anymore.  There is always someone around who will call for me.

      Pepper I like your shower routine of creating a positive mindset!  I find that people want to be around me more than I think.  But I have to give to get, and try to keep somewhat of a sense of humor when with others.

    • #19611
      Kathy stitz
      Participant

      Thank you Pepper and Marianne for your posts.

      Here is something else that happened to me recently.   A few weeks ago I went to the grocery store and when I was paying for my items, I was talking to the cashier and the cashier asked me if I am deaf.  I guess she asked that because of my speaking difficulties.   I was taken aback because nobody had ever asked me that before.  I responded by saying no.   That was all that I said.  Afterwards I was upset about it for a while and I was trying to forget that it had happened.   I never told anyone that this had happened to me.  I felt embarrassed about it.  I bring it up now in order to make pALS aware that this can happen.   Like I said, I was totally unprepared for this.  We cannot control things that other people say to us but only how we react.

       

       

    • #19620
      Fern Cohen
      Participant

      Oh I could write a book on the subject!! Even neighbors who knew me when I was an educator, treat me like I suddenly have no brain. Even when I use a speaking device or an app on my Iphone they speak to my aide and refer to me in the third person like “How is she doing?” and here’s the best “Tell her I will be coming to check her heat today” and the aide turns to me and says “the super is coming to check your heat today” and I type out I am not deaf. I heard hi, and the aide says “okay. you don’t have to have an attitude”. I have an attitude because everybody is so damn ignorant. When I tell the aide “next time, tell people to talk to me directly” she will say something like “people feel uncomfortable”

      And my family is even worse. I am single with no children and I used to see my sister and her 3 kids all the time and they haven’t invited me for family celebrations even a few years before Covid . My sister tells people it’s “just too hard”

      As I said, I could write a book and I am in the process of doing just that but have trouble with deciding on tone. I have had a book in my head since I was diagnosed in January, 2004 — 17.5 years ago.

    • #19638
      Pepper de Callier
      Participant

      Call me an eternal optimist, but we need to focus more on more positive stuff.  Yes, these things happen to all of us and will continue, but it’s how we react that makes our journey a fulfilled or demoralizing one.  It is our choice to be the master or the slave of our condition.  Face it, we are life warriors.  We live with challenges every day that “they” will never comprehend.  But we do.  This is what I choose to think about.  We know that our eyes become a screen onto which our thoughts are projected.  Think about how proud one feels to be a life warrior and let others see that in us.

    • #19640
      Frank Benincasa
      Participant

      Well said

    • #19642
      Kathy stitz
      Participant

      Yes, well said Pepper.   Thank you so much.

    • #19650
      Kathy stitz
      Participant

      I think that, when you have a condition like ALS, sometimes other people try to do everything for you and speak for you instead of allowing you to do things for yourself and remain independent for as long as possible.   They think they are being helpful by doing this but they really aren’t.

       

    • #19658
      Len Jax
      Participant

      I have been all over the place in dealing with this as my speech is now very compromised.  I was at the grocery store about two years ago at Christmas time and commented to the service desk person that the Salvation Army bell ringer had a great voice.  She was like a deer in the headlights and said, “It is good to see you again too”!  I just laughed and gave her a thumbs up, a thank you and moved on.  I always try to see the humor in the situation, accept it for what is the reality of the encounter – you win some you lose some – but I always try.  When people don’t understand me I usually laugh at what they say, wave my hand no and say it again.  That lessens the stress that they feel for not having a clue what I was saying.  We are all human, have our faults and baggage that we carry throughout our lives.  I feel sorry for the people who can not look at you in a wheelchair or because you can’t speak well.  They have a lot of baggage that they have carried all their lives and have it worse than me.

      The saddest thing I find to deal with is that I cannot carry on a fast moving, intelligible conversation with my two grand kids.  I grieve that loss and then I focus on being grateful that my wife can do that for me – I live vicariously through their interactions.  I am vocally immaterial in conversations but I can still ponder the meaning of other’s words and see the joy of their interactions!  Life is good you just have to look for it.

      I do relish calls from telemarketers now as it gives me a chance to practice my speech and torment them the way they have tormented me over the years!!

    • #19659
      Pepper de Callier
      Participant

      Well said, Len!   This is the kind of acceptance and perspective that can bring so much happiness and fulfillment to us.  Thanks so much for sharing this.

    • #19663
      Carolyn Barry
      Participant

      Len, I really like your outlook and wonderful perspective!  You have clearly shown how we all have the ability to deal with our ALS and all the limitations it brings to our lives, and turn it into a positive.  Your thoughts and how you feel joy with your grandchildren despite your speech difficulties reminds me of how I can no longer pick up my granddaughter, or how I can’t play baseball with my grandsons like I used to.  But what I can do is watch them play, see the joy on their faces, and hear their laughter.  This is what brings me great happiness.  Sometimes I do feel sad for not having the ability to do the things I used to with them, but then I try my best to stop that way of thinking and focus on what I do have.  I have a sister who sadly has had two of her children not survive an illness.  She lives by what she has often said to me….”Just look for the good!”  I’d say that certainly if she can, with her great heartache, I can certainly try to do the same.  You said just what she says, “life is good, you just have to look for it!”  You are an inspiring man, I will think of you as I face each day 🙂

    • #19676
      Len Jax
      Participant

      Pepper – I agree that it is all about acceptance and perspective – it frees the soul and puts you in a much better place.  You are a true optimist!

      Carolyn – Fading into the background with the Grands is such a sad event as are all the milestones associated with ALS.  We all have our ups and downs and how we deal with them determines our day.  I often feel sad about everything I have lost so far.  I have found I have to grieve the loss and feel sad for a bit ….  that tends to be a release for me and allows me to say goodbye to what I have lost, accept it and move on.

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