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    One difficult conversation done

    So today I finally had the courage to tell my employer about my diagnosis. It’s was hard and I got emotional but with such a diagnosis quite understandable. Even though I work now two days a week in the office nobody is suspecting anything just yet. I do hide my left hand though which shows muscle wasting when talking to others.

    For now still going reasonably well. Trying to stay positive and take one day at the time.

    hope everyone here is doing ok circumstances considered.

    marc

    #2
    That is a tough conversation. I had mine back in December but had already been off work over a year due to my late diagnosis.

    I hope your employer is supportive and you can continue to work as long as you want to x
    Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

    Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

    Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

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      #3
      Well done, hopefully it will help your employer to have a bit more awareness to consider how best they can support you.

      Comment


        #4
        Originally posted by TinyLady View Post
        That is a tough conversation. I had mine back in December but had already been off work over a year due to my late diagnosis.

        I hope your employer is supportive and you can continue to work as long as you want to x
        yes my employer is the best company I have ever worked for and in my current crisis they offer me support now as good as they can. As long as I have half use of my hand and maintain my speech I would be able to continue most of my work. So far so good. Will see what the future brings.

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          #5
          Originally posted by Claireflo View Post
          Well done, hopefully it will help your employer to have a bit more awareness to consider how best they can support you.

          thanks. Yes they will support me along the way and they will do what they can. Guess at some point I need to resign but for now it’s fine. Work though is a great help to distract me fro that illness

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            #6
            If you're in a pension scheme there may be provisions for Ill health retirement rather than having to resign (when the time comes). Also if you still have good speech you can look into voice banking which allows you to record your voice for the future. Sadly it was too late for my dad's voice so I don't know exactly how it works but speech therapist will be able to advise.

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              #7
              Marc from London thats great news. I think all of us get nervous breaking the news. Its strange but if its a stranger it doesn't bother me at all.

              Happy for you that you can carry on working until you decide. Having some control with this awful disease is a huge bonus.
              Last edited by shelly21; 6 May 2022, 12:54.
              Diagnosed May 2021 bulbar onset als.

              Comment


                #8
                Odd isn’t it that we find telling people so difficult. Obviously an emotional thing with family but also with employers, friends and even acquaintances . I think it’s partly because it crosses a line and changes the relationship. Once done though it does make things easier (I think) so well done.

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                  #9
                  You may be able to go on working for quite a long time, adjustments and adaptations can be made, and employers have a duty under DDA legislation. My employer changed some of my duties, gave me more report-writing work which I could comfortably do, saw clients at the office, they have a lift, as I struggle with stairs, even trained staff to safely evacuate me from the building in the event of a fire where we would not be able to use the lift🙂
                  I worked a further 5 years before taking ill health retirement from my employer's pension scheme. You would most likely qualify for Tier One retirement which means that your ill health pension will be the amount you would have received had you carried on working to the normal retirement age of the scheme (most likely 67). Well done for taking the first necessary steps.

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                    #10
                    Originally posted by Claireflo View Post
                    If you're in a pension scheme there may be provisions for Ill health retirement rather than having to resign (when the time comes). Also if you still have good speech you can look into voice banking which allows you to record your voice for the future. Sadly it was too late for my dad's voice so I don't know exactly how it works but speech therapist will be able to advise.
                    Thanks for the tip I was not aware just yet there there is ill health provision. Voice banking is something I want to look into. Just yesterday I had a text msg about that from my bank. Will see.

                    Comment


                      #11
                      Originally posted by shelly21 View Post
                      Marc from London thats great news. I think all of us get nervous breaking the news. Its strange but if its a stranger it doesn't bother me at all.

                      Happy for you that you can carry on working until you decide. Having some control with this awful disease is a huge bonus.
                      Hello.

                      for me somehow it does not make a difference when I talk to family or a half strangers about my diagnosis. I think that is because the emotions that are triggered are the same. Or maybe it is because I have not had a lot of such conversations.

                      Marc

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                        #12
                        I think strangers are not close emotionally wise. For me I hated telling family and friends. I hated the sadness that I was bringing them. But I'm a sensitive soul.
                        Diagnosed May 2021 bulbar onset als.

                        Comment


                          #13
                          Originally posted by Olivia H View Post
                          You may be able to go on working for quite a long time, adjustments and adaptations can be made, and employers have a duty under DDA legislation. My employer changed some of my duties, gave me more report-writing work which I could comfortably do, saw clients at the office, they have a lift, as I struggle with stairs, even trained staff to safely evacuate me from the building in the event of a fire where we would not be able to use the lift🙂
                          I worked a further 5 years before taking ill health retirement from my employer's pension scheme. You would most likely qualify for Tier One retirement which means that your ill health pension will be the amount you would have received had you carried on working to the normal retirement age of the scheme (most likely 67). Well done for taking the first necessary steps.

                          Hello. Thanks for your post. Seems you worked for a good company.
                          5 years at work seems a good stretch of time. Time will tell if I can do similar. In theory i would still have a good 20 years work ahead of me


                          All the best
                          Marc

                          Comment


                            #14
                            Marc from London - sounds like a great employer. Hopefully you can continue for as long as you want to. My speech was the tipping point for me as my job involved a lot of presentations, workshops and talking. Then when my typing was also impacted I knew I wouldn't be going back.
                            Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                            Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                            Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                            Comment


                              #15
                              Marc from London i worked for a fabulous firm in London and they have been, and still are, very supportive. I worked for a year after my diagnosis but had a stroke and was advised not to go back to work. Luckily my firm had critical health insurance. Check with your company before resigning Marc. I wish you well.

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