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Thread: Hi and I'm new!!

  1. #1
    Forum Member
    Join Date
    Dec 2017

    Hi and I'm new!!

    Hello everyone,

    Im 36 yrs and in Aug my dad was diagnosed with MND........and well....where do you even dad would say when your lost you always start at the beginning!

    This year has been an awful year from the set go and I've kept going on, so a bit of background..

    I started a new job in january after leaving my previous company after 15yrs, so this alone was new challenge and big step, by April we realised my dad was suffering with depression and this came to light after he had heart stent put in the end of Aug he was diagnosed with MND and in the same week my best friend was diagnosed with breast cancer.....i see her everyday as i got her a job at my new work place and we car share so i feel like I've been on the journey with her!!! Then to top all this off my quality at work has slipped due to the news and its really bothered me as its only my first year at my new place and I've had a year of challenge and now with my dads dianogses.....its so hard.....and to tp this off I'm organising my wedding as i get married next September.

    I feel so numb and wanted to know is this normal??? a few people have said to time out of work to digest things I'm just so concerned about letting my new company down, but i just don't think I've really take in the enormity of it.

    my dad is super positive and my mom up and down , I'm an only child so feel a huge amount of responsibility esp for down the line.

    My head it thinking all sorts of things....can anyone relate and understand my year????

    Love zeta xxx

  2. #2
    Forum Member Streetwise's Avatar
    Join Date
    Dec 2016
    Mine was partly like yours but my mother who had Lou Gehrig's disease was the worker and like you had just started a new job .
    Also like you she had that mindnumbing work ethic ,I am autistic specifically very high functioning autism and I think my mother was as well, autism doesn't leave you a lot of room to be positive but we fight before she was diagnosed by a neurologist she had diagnosed herself as our diagnostic team at our local hospital was useless .
    This was 1997 all we knew about motor neuron disease was an actor,my mother knew more than me because she had had to study to diagnose herself, so she knew she had the same form of motor neuron disease as David Niven actor ,when we left the neurology clinic and walked down the street I wasn't panicking as there was no general information about motor neuron disease at the time all I knew was her speech was going and the neurologist said she had 18 months to live
    Then I began to panic when I heard 18 months
    Got to stop I've got a bad infection

  3. #3
    Forum Member Ellie's Avatar
    Join Date
    Oct 2012
    Hi Zeta and welcome to the forum.

    Yes, feeling numb is normal. As it anger, grief, sadness, loneliness, helplessness. You might be a bit too stressed atm to see the wood through the trees: Would you think about seeing a counsellor to talk through your stresses? Even 2-3 sessions can make a big difference and help you come to terms with your year.

    Is there a workplace counsellor? or a trusted manager you can talk to before deciding whether or not to take leave?

    I know things seem dark and muddled now Zeta, but, with time and support, they will get better. You need to take care of yourself so you can take care of others.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.

  4. #4
    Forum Member
    Join Date
    Nov 2017
    Hi Zeta, welcome to the forum and sorry to here of your dads diagnosis. My wife was diagnosed in April WITH ALS/MND/PBP. I went through mostly the same emotions as you. Take all the help you can get because you are the most important person to you in this journey you are about to embark on. .. Take up on Ellies comment that a problem shared etc.
    I took councelling early on and recently had a session with the local MND teams psychologist on behaviour coping techniques. Knowing there is help out there and available will surely have a steadying effect. This forum is a good starting place
    Any manager worth his / her salary grade will already know you are distracted because you already know it yourself. You may be surprised how supportive your colleages can be.
    Best wishes Steve

  5. #5
    Forum Member AndyB's Avatar
    Join Date
    May 2017
    Stone, Staffordshire
    Hi Zeta and welcome to the forum.
    I was diagnosed with MND in May 2016. I have a son aged 33 who is also an only child. At the time of my diagnosis he was studying in India. When I told him of my diagnosis he wanted to return home immediately to help take care of me. It took a lot of persuading to convince him to stay where he was to continue his work.
    If your dad is anything like me he will want you to continue to live your life as you would have done previously. My son has said that he wants to return home to help look after me when the illness worsens, but to me that would just make him a victim of this disease too.
    I'm happier hearing of what he is doing with his life.

    Best wishes
    Last edited by AndyB; 7th December 2017 at 17:55.

  6. #6
    Forum Member
    Join Date
    Nov 2017
    Hitchin, Hertfordshire
    Hi Zeta,

    I'm so sorry for all you're having to go through. I think the initial reaction of most people is to feel bad for the person that is ill. But everyone that is close to them suffers just as much. I know my wife certainly does. She is already speaking to people in her position and it has helped her. Please do consider talking to someone, get your emotions out and know that we are all here to support each other.

    Lots of love,
    Never a victim, always a fighter

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