ALS News Today Forums Forums Living With ALS Tell us 5 lessons you have learned this year that help you live with ALS

  • Tell us 5 lessons you have learned this year that help you live with ALS

    Posted by Dagmar on November 7, 2023 at 1:01 am

    We are getting closer to the end of the year and it’s not too soon to reflect on what you’ve learned, shared, or are doing to help you live with ALS. Don’t have 5? Then how about 3? Take your time… and then, come back to…

    …share 5 lessons from life with ALS, that you have learned this year.

    Dagmar replied 4 months ago 14 Members · 23 Replies
  • 23 Replies
  • Dagmar

    November 7, 2023 at 11:16 am

    1. Never give up

    2. Stay involved with the ALS community, but also pursue non-ALS-related interests (hobbies, groups, etc)

    3. Don’t just follow daily routines, be the person who has daily routines.

    • Amanda

      November 13, 2023 at 11:14 am

      1. Focus on the positive, even when it takes work!

      2. Accept help. Ask for help. Be specific with how someone can help.

      3. Not every lesson has to be learned first hand! Learn from other’s with ALS.

      4. Live in each moment, cherish each moment, and LOVE! Love a lot!!

      5. It is ok to feel overwhelmed and frightened! In fact, it is natural when you are facing a disease like ALS. Feel what you feel, and try to move past the scary stuff so that you can enjoy the good! It’s hard sometimes, but better for my mental health.

      • Dagmar

        November 13, 2023 at 3:13 pm

        Excellent, Amanda!

    • Janet Neckyfarow

      November 17, 2023 at 3:42 pm

      1. Never put something off today because it is hard. Tomorrow it may well be impossible.

      2. Keep putting yourself out there. Sign up for classes at the Y. Go to festivals, presentations, TED talks, church, neighborhood get-togethers, walk on the beach or in the park, etc. Text and email friends and family to stay connected even if you can’t talk on the phone. I may not be able to talk, eat, or drink, but I can still communicate, make friends, and expand my mind.

      3. Do your share of the work while you still can! I can’t cook or make the bed anymore (no use of my left hand and arm) but I can clean house and do laundry.

      4. Don’t push yourself too hard. If you need a nap, take one. Intersperse things you WANT to do with things you HAVE to do.

      5. Smile. You’ll make yourself and everyone around you happy!

      • Dagmar

        December 22, 2023 at 4:41 pm

        Thank you Janet!


    November 15, 2023 at 9:27 am

    1. I do everything slowly.

    2. I have to be open to accept help from people.

    3. It requires all my attention to walk so I can’t be distracted.

    4. The best thing I did was hire an aide 3 mornings a week; that gives my husband a chance to escape.

    5. I gave up driving.

    • Fran Finney

      December 19, 2023 at 2:35 pm

      Wonderful, meaningful, and very helpful, Lorraine.

  • Sunny

    November 18, 2023 at 2:16 pm

    Eat something small in public. You will finish with everyone else.

    Keep your friendships. Your friends will love you even when you drool on occasion and with practice they will understand your slurred speech.

    Enjoy what you have. My lungs are weak but my legs are strong. A walk in Prospect Park NYC was wonderful. A very slow walk with time to enjoy the fall colors.

    Enjoy your family. In December I am going to be a first time grandmother. His name is Alexander.. Everyone is so excited.

    Be interested in life. Your illness is just one thing about you it is not you.

    • Dagmar

      December 22, 2023 at 4:43 pm

      Congratulations on the new baby in the family!

  • Roman

    December 11, 2023 at 5:30 pm

    1. Accept and say thank you to the desease. I have learned a lot from ALS.

    2. Love and enjoy people, family, friends, community, all.

    3. Spiriruallity is very important

    4. Be connected with others

    5. Never forget The Hope

    • Dagmar

      December 22, 2023 at 4:43 pm

      All great!

  • Patricia Koopmans

    December 12, 2023 at 2:14 pm

    1. Cherish each day we have

    2. Don’t forget to ask! People in my life are thankful to help

    3. Stay active as much as you can

    4. Love those around you fiercely

    5. Have patience with your downfalls. I broke my wrist in a fall but in therapy am learning how to change things so I walk better!

    • Dagmar

      December 22, 2023 at 4:45 pm

      Hope your wrist is healing!

  • deb-winters

    December 12, 2023 at 3:01 pm

    <div>Thirst, let me say what an incredible list is already posted.</div><div>
    </div><div>I have learned to be kind to myself. I have learned to ask for help. I have learned to do what is most important to me first, and each day only do what I can.</div><div>
    </div><div>But one of the biggest helps I’ve learned is how to do talk to text, or whatever program I’m using – it’s using my speech, which has not changed, has been incredibly effective. Having been born right hand, dominant, my left hand is not nearly as effective, but my right hand and arm are of no use. This simple trick has made a huge difference in my day-to-day work.</div>

    • Dagmar

      December 22, 2023 at 4:47 pm

      All great!

  • Dagmar

    December 19, 2023 at 11:07 am

    I believe that as a patient, I need to help my caregiver (husband) by doing what I can to make caregiving for me “easier.” By that, I try:
    – make an effort to keep my muscles strong by doing all prescribed exercises.

    – eat and drink what is necessary for my body. Avoid not eating because of negative thoughts or swallowing issues. Find solutions!

    – maintain as best I can a quality relationship with my caregiver. They are humans with feelings needs, and emotions.

    – participate in what I can, but be aware of when my caregiver feels overwhelmed, and allow them their own “me-time.”

  • Sonovia Horace

    December 19, 2023 at 2:53 pm

    1. Have patience with your caregivers.

    2. It’s ok not to be ok.

    3. Stay connected with family and friends.

    4. Talk about what going through with ALS.

    5. Don’t give up.

    • Dagmar

      December 22, 2023 at 4:48 pm

      #5 is so important 😉

  • Alan Larrivee

    December 19, 2023 at 6:44 pm

    1 Be honest with others and especially yourself about your condition

    2 allow others to be helpful in the ways they feel comfortable

    3 keep a sense of humor

    4 seek spiritual guidance and peace

    5 celebrate each day you have with friends and loved ones

    • Charles Sutherland & Doris Sutherland (caregiver)

      December 21, 2023 at 8:11 pm

      1. Be patient

      2. Don’t be in a hurry

      3. Enjoy every day

      4. Know your limitations

      5. Getting comfortable with, and use to saying I cannot do a lot of things

      I asked my husband these questions. He was diagnosed in September 2022. He’s still able to talk but his voice is worsening. His walking is very very limited.This year he mastered the mobile wheelchair and has almost mastered driving the wheelchair into the van.

  • Douglas M Clough

    December 20, 2023 at 5:27 pm

    I lean hard on my faith.

    Remember, I am not the only one in this family hurting because of ALS.

    Other people in this family have lives they need to live away from me and away from ALS.

    Get some daylight every day, and meet with a friend if possible.

    I try to live my motto, Love Life and Live Life, as best I can.

  • Paul Tavano

    December 21, 2023 at 2:32 pm

    1. Be patient with yourself and with others. Accept that it will take me longer to do things. Accept that people will ask me to repeat myself.

    2. Don’t be afraid to ask for help when really needed. Don’t stop trying but if you can’t do it ask for help.

    3. Don’t let your limitations prevent you from enjoying your family and friends. They will accept and love you unconditionally.

    4. Stay positive and laugh often. Don’t be a Debbie downer and don’t allow others to bring you down.

    5. Help other PALS whenever you have the opportunity. Share your experiences of what works and doesn’t work for you. Be open to new ideas.

    • Dagmar

      December 22, 2023 at 4:51 pm

      So good, so true! Thank you!

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