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    Pet hates

    People walking to slow......🤭
    Doctors.......😂
    Being late
    Delivery drivers asking you to take in parcels for neighbours


    #2
    Lack of integrity, dishonesty and selfishness are my hates. I can tolerate pretty much anything else, but those hurt people badly.
    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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      #3
      Healthcare professionals ringing up to say they’ll be late 10 minutes after they’re meant to be here (yea I kinda guessed that seeing as though you’re already late…) or not calling or showing up at all

      Being on hold for an hour waiting for the GP staff to answer

      GP constantly getting the prescription wrong even though everything is listed under a shared protocol

      PIP assessors being over an hour late for the virtual assessment, not providing any form of apology, then clearly paying no attention to the answers given to the questions, as the results letter is completely fictional

      Being talked to loudly and slowly (like the old sketches about English people talking to ‘foreigners’) just because I have poor speech! I understand you perfectly, I don’t have a learning disability…

      Car dealers talking to my husband, even though he knows nothing about cars; I’m the driver and I’m the one asking the questions, stop telling him!

      There are plenty more but this’ll do for now 😂
      Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

      Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

      Comment


        #4
        Mrs. Taff - the speaking to us like we are idiots or deaf is one I can really relate to. I think I need a badge explaining!
        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!

        Comment


          #5
          People private messaging me with a long list of problems after I said no MND , your doctor says no MND , clear emg results...........Where's Peoples morals, empathy 🙄

          It's so clear to me, the difference between genuine concerns for one's health......and anxiety driven people who think it's ok to still carry on describing their symptoms, including foaming at the mouth ....wtf

          Comment


            #6
            Originally posted by SAMMY88 View Post
            People private messaging me with a long list of problems after I said no MND , your doctor says no MND , clear emg results...........Where's Peoples morals, empathy 🙄

            It's so clear to me, the difference between genuine concerns for one's health......and anxiety driven people who think it's ok to still carry on describing their symptoms, including foaming at the mouth ....wtf
            😱😱😱
            That’s awful! Really sorry to hear you’ve been subjected to this. Some people!
            Hi, I’m Pauline. Keeping positive, working through a bucket list with the love of my life, my husband Gareth.

            Diagnosed July 2022 Bulbar onset ALS. PEG fitted but not used yet. Speech poor, some swallowing issues, right arm weakness and loss of dexterity, left arm getting weaker. Starting to feel unsteady on feet but still mobile.

            Comment


              #7
              Mrs. Taff Thanks , i did find it quite upsetting.

              Comment


                #8
                SAMMY88 - I had to read your post a couple of times because I couldnt quite believe it... really? Why are they doing that to you? So sorry 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!

                Comment


                  #9
                  TinyLady, yep definitely true, I'm cursed lol i collect rare diseases too but can't get one number on the lottery 😂

                  Comment


                    #10
                    Adding GP receptionist to the list. What a rude uncaring unprofessional **** she is. I booked a flu jab appointment in advance, she turned me away , I insisted I'm in the high risk category and have an appointment. She didn't even take my name. She said sarcastically not my fault no staff....

                    I screamed not my fault I'm dieing and stormed out.....well slowly and swearing along the way.

                    I know not very lady like but I'm sick to high heaven of being treated like dirt while trying to stay upbeat with bloody MND. Luckily for her there was a glass barrier between us, because my only good hand would be heading for her face .

                    Comment


                      #11
                      People stopping for a chat in the supermarket and I can't get past.
                      ​​​​​​
                      services that don't take a card. Also those that sometimes ask for a pin and I can never remember it.

                      People that get diesel/petrol and then buy up everything in the garage and all the pumps are taken and I have to wait for them to finish.

                      Watching TV and most of the ads are for funeral services.

                      🤔
                      when i can think of something profound i will update this.

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                        #12
                        Michelle69 Stop private messaging me, I'm not rude you are 😡


                        Comment


                          #13
                          SAMMY88



                          Try this:

                          How do I ignore another member?


                          If there are particular members that are bothering you and you do not wish to see their posts or receive Private Messages from them, then you can add these members to your 'Ignore List'.

                          In the top right of the forum, click your Username. A dropdown menu will appear and from here you need to select 'User Settings'. On the page that appears, click 'Account' and scroll to the bottom. In the text area next to 'Ignore List', enter the Usernames of users that you want to Ignore.
                          ​
                          ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                          Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                          ​

                          Comment


                            #14
                            Thanks Ellie I shall try that now xx

                            Comment


                              #15
                              When you block a person on here, but mnd forum still sends you an email of the message 😒

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