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Thread: Shocked New starter

  1. #1
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    Shocked New starter

    Hi Everyone, Iíve just joined as I was diagnosed with MND this morning at the ripe old age of 55. Having seen that this affects anyone and at any age, itís good to know there are lots of people to reach out to of all ages.

    Iím Andrew, and I was in the RAF for 30 years so seen quite a bit of life. Iím happy to hear from everyone, particularly if you have good advice . I live near Huntingdon Cambridgeshire so if you are close, it would be great to hear from you also.

    This is only day one of this but I hope I will have many more days to tick off too .

  2. #2
    Forum Member Ellie's Avatar
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    Welcome to the Forum, Andrew, sorry youíve had to join us.

    Youíre obviously very much together, posting on Day 1 - that's the RAF-man in you ??!!

    May I ask if you have limb onset ALS/MND as opposed to bulbar onset or another type of MND?

    My entry level advice to you is to stay as healthy, mobile and safe as you can; be positive and live the most fulfilling life possible; check out dietary/food supplements; listen to your body.
    As youíre newly diagnosed, see what clinical trials your MND Clinic is offering and get on one.

    For now, stay safe

    Love Ellie (13yrs post diagnosis)
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  3. #3
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    Hi Andrew,
    Can I ask how long it took for you to get a diagnosis.

  4. #4
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    Hi Andrew,
    Welcome to the forum, sorry about your diagnosis.

    I and 67 and was diagnosed 16 months ago with Bulbar onset and live about 50 ish? miles from you in Ipswich. I’ve learned a lot since diagnosis and I’m sure we will all be able to help you with any questions you have especially about the help you may need, normally after diagnosis you are over whelmed with the amount of appointments you’ll have with various specialist but it will all be useful moving forward.
    Such a shock to start with but I’m sure you will get passed that point as I did and make the most of life.
    Regards David

  5. #5
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    Not sure yet, its started in my throat area with speech issues and swallowing.

  6. #6
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    Thank you

  7. #7
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    I first visited a doctor in January 2020 which directed me to hospital for tests. I was called back for an appointment on the 11th May but this was delayed until today.

  8. #8
    Forum Member Ellie's Avatar
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    Quote Originally Posted by bilvers View Post
    Not sure yet, its started in my throat area with speech issues and swallowing.
    OK, thanks. That sounds like bulbar onset - you might hear that term used by the healthcare professionals.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  9. #9
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    Hello Andrew and a warm welcome to the forum.

    I am so sorry for your diagnosis this morning but well done for posting on here so soon. Even if an MND diagnosis is suspected it's still a huge shock to have it confirmed and your mind must be reeling. It took me a while to come to terms with it before I wanted anyone, apart from close family ,to know.

    I won't add to the good advice you've had on here but do accept any help from your OT, physio and nurse. They are able to look ahead to plan for your needs wlth exercises and equipment to make life easier. When I was newly diagnosed I didn't want to so I waited until everything became urgent. They did understand and are still speaking to me !!

    It sounds like you have a great, positive attitude to life which will really help you as there are good times ahead to be had.

    Take Care,
    Love Debbie

  10. #10
    Forum Member Barry52's Avatar
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    Hello and welcome Andrew.

    Sorry you find yourself here but you can be sure of good advice and morale support. I was also bulbar onset which eventually turned out to be the MND sub division PLS. We have something in common in that my granddaughter’s boyfriend lives in Huntingdon.

    Stay positive and keep safe.
    Barry
    Iím going to do this even if it kills me!

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