• Attitude and ALS

    Posted by Amanda on July 7, 2023 at 7:55 am

    One of my best friends lost her son to an overdose when he was 27 years old. Somehow she took this experience and made herself an even kinder, generous, and more compassionate person. She makes our world a better place despite such a painful experience.  

    I can’t think of a greater loss than losing a child….to anything. My friend inspires me in countless ways. She is a big reason that I approach my ALS the way I do. 

    I don’t look at myself as a “Fighter.” I don’t want to spend my life “fighting” something. That takes so much energy, energy I want to spend on life, and love! Instead, I face each day with gratitude for what I have and can still do. I cannot change the fact that I have ALS. But, I can control my attitude.  

    What influences your approach and/or life philosophy? How do you approach each day? 

    Jeff_B replied 1 week, 5 days ago 8 Members · 9 Replies
  • 9 Replies
  • Tara

    Member
    November 21, 2023 at 2:19 pm

    I was diagnosed with Bulbar ALS in May of this year. Initial symptom was affected speech. I am finding new meaning and joy in rather simple things– taking a walk (which I can still do), visiting with family and friends (they can still understand my garbled speech), taking in the beauty of the outdoors. These are more precious to me as I recognize that there will likely be a time when I cannot do them, at least not without difficulty. I am trying to live “in the moment” more, and savor each day.

    • Lisatodd

      Member
      June 27, 2024 at 5:06 pm

      My husband has the same. Question have you started text-to-speech app? I am struggling getting my husband to use it. I understand he must feel like he is losing control but him trying to talk and I don’t understand leads to him not communicating. Would love any input. It is so hard as a caregiver to encourage him or do I not push it???

      • Dagmar

        Member
        July 2, 2024 at 11:53 am

        If he has trouble typing, then try a Boogie Board. I know I felt angry and frustrated when my speech changed. He’s probably feeling that too. Also, it is an adjustment when your mouth forms words slower than you are thinking them. Are there gestures you both can use for simple commands? If he is willing to try to speak (and not be angry at ALS) then what helped me was learning to pronounce words as if I were a foreigner learning the English language. A good video series that helped me was: https://www.youtube.com/@hadar.shemesh

  • Hal

    Member
    November 21, 2023 at 4:12 pm

    Hi Amanda…thanks for sharing. Attitude is something we can control and more than anything a good attitude is something that not only helps us but more importantly our loved ones. That said, I also believe a fighting attitude is a good attitude and in many ways, that to me is one of the great challenges of this disease. When you’re a few years in you start getting cut off from most trials… and you’re left with a few options that might simply slow progression. Here’s to hoping those of us that really want to fight start having more options!

    • Amanda

      Member
      November 22, 2023 at 6:36 am

      Hal, good points!! I do continue to advocate, volunteer and donate to ALS research as much as I can which continues to be at least once a month. I suppose “fight” may not be the right word, I could have found a better word. I will always, always do anything I can to support ALS research or help any and every pALS I possibly can. I’ve watched 15 family members die from ALS. Several of my family members continue to volunteer for medical research, raise money and are very active in ALS communities in a volunteer capacity.

      Thank you for your insight! As always, I appreciate your input and thoughts.

      Amanda

  • Dagmar

    Member
    November 28, 2023 at 10:58 am

    I agree with Amanda… I don’t like to think I am fighting my ALS. It’s not an outside virus attacking my body or a “thing” affecting me… ALS is my own body that has gone awry – – misfolding of the DNA proteins. I don’t know what triggered my ALS, or need to find out at this late date. So, my attitude is to “live with it”… coexist with it, and not let ALS dominate my life. I look forward, not backward.

  • Patricia Koopmans

    Member
    July 2, 2024 at 2:38 pm

    I lost my dad when I was only 5 years old. He had ALS. An Uncle of his had it in the 1950’s, and eventually my dads cousin of that Uncle had it also. He died right after I was married. Walking thru life it was always family folklore. I thought about it almost daily, but really didn’t expect to have it. I look like my mom, have talents of my mom. But I was diagnosed myself about 18 months ago with limb onset, just like all my relatives started. The Drs told me I had the gene all my life and it decided to turn on. When I had the blood work to find out I thought thru my life. I never smoked, never drank and never got diabetes. I was born. That’s my mantra. But I’m a firm believer in the Lord, who planned my steps from my birth. I am at peace. I hope my children are spared but I can’t do much about it. I live each day and am grateful for each day I have. I’m trying to adapt daily to my ever changing strength, using chairs and walkers and canes is necessary now. It does us no good to be angry or bitter. It is far better to smile, take help and be grateful for each day we have.

  • Micky

    Member
    July 3, 2024 at 10:29 am

    Hi Amanda,

    I really loved your post. Such a terrible tragedy for a family to go through. My heartfelt sympathies.

    These days for me this early summer are an “adventure”- walking w/o my AFO’s as much as possible to the lake beach using a walking pole for my right hand. I keep trying to laugh because some of it is funny at times – my family assisting me into the water with the tube around my waist, or my wife pulling out to higher water by my toes. It’s certainly a challenge. I try to keep the attitude of cherishing what I still have, rather than what function I’ve lost, and never losing hope that I might get better. Keep on keeping on.

    Mike (Mickey)

  • Jeff_B

    Member
    July 4, 2024 at 5:32 pm

    I agree with the general sentiments that attitude plays a significant role in one’s ALS journey. I use the term “journey” quite purposefully, as I think it best represents my perspective. Since my ALS diagnosis seven years ago, I too have consciously refrained from using the terms “fight” or “battle” in describing my situation. While they are just words, for me, they place disproportionate emphasis on the aspects of adversity and conflict. God knows we face those, but I don’t want to make them the centerpiece of my experience. I chose the term journey, as it is the lense which I frame my ALS experience. I want to place my focus for the remainder of my life on the positive aspects of trying to live fully, versus negative aspects of trying not to die. Subtle in terms of word choice, significant in terms of perspective.

    Word choices, for me, are important. If I was to envision an aspirational word cloud for my desired approach, I would hope that words like “acceptance, presence, resilience, proactiveness, flexibility, patience, grace, love, and kindness” would be prominent.

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