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    Hi all. I'm just not coping with family and Friends seeing my decline. I have tried getting to see family etc but today I visited my 80 year old parents. It was ok until speech went tired. Then when I left my parents hugged me and I just cried.

    I hate what this disease has done to my loved ones. I love my parents deeply and even though its not my fault I feel so angry that in their last years of their life they will be sad.

    I just wish I could not cry in front of them.

    Diagnosed May 2021 bulbar onset als.

    Oh Shelly, I’m so sorry you feel that way. I guess we all feel that way to an extent. I feel very sad that my family are sad. Praying for you and sending love.
    Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes


      Hi Shelley
      you made me cry too. Our parents aren't around anymore just our children. I often wonder how they feel. They dont say anything and I haven't asked. Stephen doesn't get upset because I don't know that it registers with him that anything is wrong other than he has difficulty with his hands. I think I cry for both of us.
      when i can think of something profound i will update this.


        Thank you both and I'm sorry I made you cry denise.
        I'm ok when its just me & tom. But my mom especially wants to see me every week.

        I am trying by accepting a few party invites. Re not speaking is a major issue. My twin brother avoids me and at our last gathering he couldn't even look at me.

        I don't want to cut people off but I also don't want to cry in front of loved ones.

        Maybe I need to just keep going for meet ups and hopefully I will find a way of coping.

        Diagnosed May 2021 bulbar onset als.


          shelly21 it must be really tough to be so vulnerable when with your easy answer.

          I find it easier to meet people I see regularly....they've seen my physical changes....harder to see people who haven't been around as often.

          I admit to keeping some people away.

          Do whatever feels right for youπŸ’™πŸ™πŸ˜˜

          Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. NIV overnight. Generally weak. Mostly terrified.​​​​​​


            shelly21 I think it's particularly tough for our parents to see us progress/degenerate (whatever you want to call it) If I look at what I want for my own kids, it's for them to thrive, to be healthy and to be happy, so I imagine my parents, your parents, most parents, have the same hopes for us, whatever age we 'kids' may be.

            Perhaps desensitising everyone's emotions is the way forward? The more often you are together, the more you all get used to being together and life settles into a new equilibrium.

            If one or two don't want to come onboard, so be it - that's families for you plus, there's always one, isn't there πŸ˜‰πŸ˜ πŸ€—πŸ€—
            ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
            Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.



              shelly21 absolutely understand where you are coming from. I find I'm OK with family/friends I see regularly, and a couple of distant friends who are nevertheless totally unphased. I just get frustrated if I am more wobbly, less able etc and people who I don't see often seem surprised...'you were doing so well' and 'you're fighting this really well' come to mind, as if it's a skill test!! My parents never had to see me, but my kids are quite pragmatic and just assume I will keep going, and for them I best I can.
              I suppose those who love you want you to be as well as you can, but they just have to let you be how you are x


                shelly21 I do understand how you feel. I try not to cry in front of my mum. My 80 year old mother lives with us and she has been diagnosed with Lewy body dementia it breaks my heart as I am not able to help her in any shape or form. I want to take care of my mum and make her comfortable in her later life but it’s not possible for me physically. Enjoy your precious time together with lots of cuddles xx


                  I really appreciate all your words. I know I need to desensitise from it. I think its been a hard week with me loosing ability to walk plus speech taking a huge dive.

                  The strange thing is I know now I'm in my wheelchair I actually can't visit people re access issues. That doesn't upset me.

                  I won't go the pub where we have a big group of friends because its a tiny not adapted pub and covid cases are rife etc. That doesn't bother me either.

                  I just need to handle my siblings, parents & 2 close friends.

                  Once again on one of my worst days i appreciate your warmth and love x
                  Diagnosed May 2021 bulbar onset als.


                    Madge its hard isn't it. I did everything for my mom. If she needed to go hospital she would call me. I would do loads jobs for her etc. She lost her own mom when she was 14.
                    I feel for even more so knowing your mom is living with you and you can't help. Big hugs x
                    Diagnosed May 2021 bulbar onset als.


                      shelly21 - I'm so sorry to hear how you are struggling with family. I can totally relate to this, I am also tiptoeing around other peoples feelings. Thankfully my teenage daughters have been great and we mostly just laugh and they like to nag me about me over doing things.

                      But my parents have been really thoughtless and hurt me enourmously. They talk to me as though I have decided to be disabled and I want to hurt and upset the family. They even told me off for mentioning it on Facebook and not keeping it secret. I don't cry with them, I feel hurt and angry and then guilty.

                      So whilst it is hard that you cry. Your bond with your parents is obviously deep and kind and loving. I think tears are an expression of emotions we can't put into words, not just sadness and I'm sure by opening up your parents actually feel special xx

                      Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                      Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!


                        TinyLady that is truly awful. So they expect you to hide away? You carry on mentioning it on Facebook. I have. I have lots of people wanting to know how I am so I put updates up albeit upbeat but I also moan about poor services etc. I want people to see this disease for what it is.
                        yes I did worry how my family would take it but at least they know how I am.

                        I'm very sorry your parents have hurt you at a time that you need support.

                        I have always let my parents know that i love them. I'm very forthright that way but also in the other way when I say what I feel.


                        Diagnosed May 2021 bulbar onset als.


                          shelly21 - and that very real bond you have with your parents is exactly why you cry and it must be so hard. But it is wonderful too. You are being real and genuine and I respect you and admire you for that and I am certain they must do too πŸ€—

                          I think I am slowly growing stronger and fighting to live my own life now. But I wish I hadn't let my parents hurt me so much over the years. I always worry about others feelings, but I'm giving myself permission to focus more on myself xx
                          Diagnosis confirmed as atypical ALS Jan 2022 (age 46) after several years misdiagnosed.

                          Symptoms began in left foot 2017. Now widespread. Powerchair user, useless left arm and clumsy right hand but generally positive!