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Thread: Hi Everyone

  1. #1
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    Hi Everyone

    Hello everyone

    My name is Adam. I live in Manchester and I'm 32 years old. I was diagnosed with ALS on the 6th October 2017. I believe that I had been experiencing onset symptoms around March / April 2017.

    I noticed that I was struggling to tie my laces, button my shirts, frequently dropping brews etc. I used to be an active person, frequenting the gym 4-5 times a week. But I noticed that rather than becoming stronger that I was actually becoming weaker. Fatigue was also increased, often having to fight to get out of bed.

    I'm married. I have 2 young boys aged 6 and 11. The day I was diagnosed was also the same day my eldest became 10.

    So here I am. Over 2 years from onset. Alot of tears. Alot of love. Amazing support from family and friends. A medical trial in America. Lots of trial and error.

    Currently living in hospice whilst we agree what is best going forward. Not only for me but as a family as well.

    If you are interested I have a PEG which is only used for rehydration and to administer medication. I use a cough assist usually once a day. I tried the nippy a few times but decided that ultimately it's not for me. I also have a grid pad using eyegaze which for me has been a lifeline. Enabling me to occupy my mind and keep in touch with friends and family.

    I know that the above is brief but I have been reading posts on this forum for over a year now and I now feel ready to contribute. Ask anything and I will be as helpful as I can.

    Thanks

    Adam

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Adam. It's nice to hear from you. It sounds like a fairly fast degeneration. I'm not surprised that you haven't felt up to joining in on forum discussions. Me and Dina are in Greater Manchester so you are probably not far away from us. Thanks for the offer to answer questions.

    How are the hospice dealing with your MND? Are they experienced? I haven't explored that option yet as I'm not as far along this horrid journey as you describe. But I try to take in as much information as I can to prepare myself.

    Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Adam and a warm wwlcome to you.

    It sounds as if you're well supported and set up, apart from the small matter of sorting out where to live...

    Are you looking for CHC, or maybe you already have it?

    May I ask which US clinical trial you were on? We're always interested to hear about those!

    Anyway, glad you posted and hope to get to know you - my own kids were young when I was diagnosed, so I empathise with you on that front.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
    Forum Member Barry52's Avatar
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    Hello Adam and welcome.

    If you have looking in for a while you will probably have got to know some of us and no doubt you have a sound understanding of MND. I always feel sad to hear about people affected by this disease in the prime of their life and with young children, especially as some of us are approaching the twilight years.

    Any advice or moral support you need just ask and may I wish you success in your search for a suitable place to live.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  5. #5
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    Hi lynne

    Thanks for the welcome.

    I too have been surprised by the quick progression. At first it was purely my left hand. A slightly slurred voice. That remained until June 18 when I started to use a wheelchair due to a few falls and loss of balance.
    I'm now totally reliant on others for help with every aspect of life. The only body part that I have control of is my neck. Though at times it gets sore. I tend to alternate between the bed and my manual wheelchair nowadays.
    The hospice have been great. I appreciate they might not be for everyone but my needs have been met so far. Much more relaxed than my experience in hospital wards. I have a large room, my own toilet. Staff are aware of my routine. They have plenty of experience with mnd patients.

  6. #6
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    Quote Originally Posted by Ellie View Post
    Hi Adam and a warm wwlcome to you.

    It sounds as if you're well supported and set up, apart from the small matter of sorting out where to live...

    Are you looking for CHC, or maybe you already have it?

    May I ask which US clinical trial you were on? We're always interested to hear about those!

    Anyway, glad you posted and hope to get to know you - my own kids were young when I was diagnosed, so I empathise with you on that front.

    Love Ellie.
    Hi Ellie
    Yes I have been approved for CHC funding and I am not sure if I want to go to a care home or whether to stay at my parents and take the personal health budget and source my own carers.
    I previously had social care package when I was at home and it wasn't a pleasant experience. I found it very intrusive on family life, different carers all the time, little to no knowledge of mnd or my care plan and often unreliable. I hear stories of great social care however it wasn't the case for me.
    I will do a separate post about the clinical trial that I took part in. However if you follow the link you will see my appearance on the local news in Virginia.

    https://www.facebook.com/KarinaNBC12...8239510221930/

  7. #7
    Forum Member Ellie's Avatar
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    Adam, do you wear a neck support? The right one should stop your neck from getting sore.

    Sorry the trial didn't work out for you.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
    Forum Member Gillette's Avatar
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    Hi Adam and welcome to the forum but sorry that you have this horrid disease.

    I am pleased for you that being in the hospice is meeting your needs at the moment. I donít envy you having to make such huge decisions about where and how to live.

    I really understand your feelings about having carers visiting the family home. Itís not easy, is it?

  9. #9
    Forum Member nunhead_man's Avatar
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    Good afternoon Adam

    And welcome for me too

    I note what you say about carers - joys to come for us here I guess!

    I note you decided that the breathing assist was not something for you - do you mind me asking where you are in terms of how much your breath function is affected?

    I ask as a nippy user, although that the moment is for sleep apnoea, not for MND

    Warmly
    Warmly


    Andy

    ​Diagnosed 03/2015. Limb onset (arm) sporadic ALS/MND.
    MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

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