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    Hi all, It's quite a hard discussion for me especially being a public group. I know it's hard on our families after getting a diagnosis of MND, but I'm finding close family members dismissive, doubting I'm actually disabled. Refusing to talk to me about my illness. Even asking why on earth do I keep falling backwards and to stop mucking about. Yes I still look normal but surely they can see the struggle in me. To them I seem to have just a slight limp, slowness to me.

    Its quite another thing to feel the weakness, have no movement in your feet/ toes. Every step you take is scary, balancing hoping your legs aren't going to buckle from underneath you.

    I wonder about the future , worried I feel my family certainly isn't ready or willing to accept I'm now disabled. Everyday I push myself to do things way beyond my strength. I do ask for help but it's falling on deaf ears. How can they possibly understand I literally have no strength, certain muscles simply don't work anymore.

    I'm not the same person, no amount of training my muscles, pushing through the pain . Trying my hardest to walk for further, to cook a meal. Simply dressing myself I break out in a sweat. All the Everyday things people take for granted. I'm failing my family and there's nothing I can do about it. They make me feel like I'm not trying hard enough. It's so easy to get up from a chair, go shopping, unload the washing machine, make dinner, run around for everyone before.

    Now im a burden..

    #2
    We found that when we first told people about Deans diagnosis they just went quiet and kind of looked blankly at us. They then all followed the same pattern, went off and did a bit of research about what is MND. I must admit we didn't really know what it was until we researched it.

    They then all got back in touch about twenty minutes later (thats all it takes to find out enough) with OMG's and offers of help and support. And usually a few tears.

    Perhaps you need to point your nearest and dearest towards some accurate information (MNDA literature is very good - but scary)

    If they don't want to know, or are in denial (which is part of the anticipatory grieving process) not sure how you can get them to understand.

    Certainly make sure that you are referred to social services ASAP and take whatever help is offered as soon as possible to make sure that you are "in" the system as they will be your source of support if family members aren't. If you wait until you are desperate you will reach crisis.

    Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

    Sense of humour intact throughout.

    Sadly passed away peacefully 2/9/22

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      #3
      SAMMY88 - I can totally relate to this. Since diagnosis I have felt very lost and worthless because so many family members/ friends basically seem to be avoiding me. I'm reluctant to put specifics on here (like you) but found even after all these months... the same handful of people are supporting me that helped pick me up after diagnosis, and the rest (including some immediate family) are unable or unwilling to get involved. It really hurts.

      But I celebrate the few who did step up. Some very surprising - such as former (male) work colleagues who now take my daughter climbing EVERY week and sometimes work from my house so I still feel a part of things. I was blown away by this gentle kindness.

      I hope you can find a small army of support, maybe not from where you expected, and can learn to accept all you can do is your best. I am a mum to teenagers and it's so hard not to be able to cook etc. Instead they are getting me dressed, cooking, feeding me and taking on far more responsibility than we would choose.

      I wish I had an easy solution for you... but I'm still looking too. Sending hugs xxx
      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!

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        #4
        Thanks MMG and TinyLady for replying x

        Weird how the family/friends you thought would step up......seem to have disappeared.

        It does hurt having to deal with people's reactions on top of getting the worst news of your life.

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          #5
          You do have to consider that its not a case of family and friends "stepping up".

          They may be struggling with the news and actually not know what is the right thing to say or do and maybe waiting for you to ask for help.

          They may fear upsetting you if they acknowledge the diagnosis with you or it may have caused them anxiety etc.

          It is a very complex situation.

          I still meet people who are scared to mention my husband at all because they don't know what to say or how I will react, and then others who offer to be there and who I know will actually be there if I need them, and then their are others with morbid curiosity who I would never call upon.

          You will certainly find out who you can rely on and as has been said above they may not be who you thought. But don't think that the others are intentionally letting you down. They are also dealing with devastating news and may not want you to see them upset through fear of upsetting you any more (if that is possible)

          Don't try and second guess what other peoples thought processes are. And don't expect them to know how you feel if you haven't told them. Communication is key.

          People outside of your small circle aren't living and breathing this, so have no clue about the day to day details.

          Being ignorant of it doesn't make them uncaring. None of us knew much about this disease until it hit us in the face.

          I am not being critical, just trying to put a different viewpoint out there.

          Sending hugs and love. xx



          Carer for husband diagnosed with ALS April 2021. Hand onset. PEG fed, completely immobile, communicated with eye gaze

          Sense of humour intact throughout.

          Sadly passed away peacefully 2/9/22

          Comment


            #6
            What MMG has said really resonates with me. I think a lot of people struggle with how to handle the realities of our diagnoses. Many people initially react like camels and stick their heads in the sand. But who could blame them.
            I also hear you SAMMY88. I often find myself left to do so many things that my hubby could/should be helping with, and struggle terribly while he is blissfully laying on the couch watching TV or playing games on his phone 🤷‍♀️🤬
            I found many of my friends avoid seeing me, but I understand that my illness might be more than they can emotionally manage. But like TinyLady, there are a couple who have really been life lines, and I am so thankful for them.
            The people in your life who question your diagnosis, or think you’re “fine” and should just carry on like normal, will sadly be dead wrong soon enough. As we are all painfully aware of the progressive nature of our illness, it will eventually be so painfully obvious that we are seriously afflicted.
            I’m so thankful for my parents…in their 70’s, but still driving me to all my appointments and helping me with grocerying, cleaning, and really anything and everything on a daily basis. My poor mum, definitely didn’t anticipate having to look after me at this age!

            Comment


              #7
              SAMMY88 sounds so hard and like they just don’t know how to react, don’t want to know and accept. Have you really been holding the family together up until now? So difficult when family has been running apparently smoothly and now no longer possible and requiring change all round . . Lots of love and hugs to you xx
              Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                #8
                MMG I politely have to disagree, it is about stepping up, I stepped up many times for this family member. I guess everyone isn't the same, I shouldn't assume others are like me . Normally im the first to help out in my family without being asked .

                Then again there's the argument we are all individuals, if one doesn't want to help its their prerogative.

                So sorry for the lost of your husband xxx

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                  #9
                  SAMMY88 I am the same. My sister has suffered with depression for over 20 years. I've let her live with me, helped her get back up. Been there when she felt scared etc.

                  She telephoned me the day of diagnosis and cried. She is a nurse.

                  She hasn't asked me how I am since that day and hasn't been to see me.

                  You can change people. In me i know that when I'm gone she will dwell on that.

                  Please let go of the negative feelings. X
                  Diagnosed May 2021 bulbar onset als.

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