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Thread: Progression of MND

  1. #1
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    Progression of MND

    Hello, my Dad was diagnosed at the end of last year. He started with foot drop, and a weak voice. His voice is getting weaker, with slurring and some gasping during sentences. He is generally exhausted, with difficulty walking. Iím worried and scared about the relatively quick progression.

  2. #2
    Forum Member Kayleigh's Avatar
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    Hello Moll,

    Sorry to hear of your dad's diagnosis.

    It is difficult to make accurate predictions about progression because everyone's
    rate of progression is different, and it can sometimes slow down for a while.

    There is a lot to come to terms with, but there is also much that can be done to improve the quality of life of a person with MND. Your dad should receive ongoing support from a team of NHS healthcare professionals, including a physiotherapist, occupational therapist, dietitian, and speech therapist - although sometimes it can take a while for the initial appointments to come through.

    Please feel welcome to ask any questions. We are a forum of friendly folk and we try to support each other as much as we can.

    Best wishes to you and your dad,
    Kayleigh x
    We are a fabulous forum family - the precious bond we all share is powerful and strong!

  3. #3
    Forum Member Barry52's Avatar
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    Hi Moll,

    Sorry to hear about your dad and I’m sure you are all still trying to come to terms with this. As Kayleigh says make sure he has a good support team set up because they can make dealing with the symptoms easier. MNDA connect can help with pointing you in the right direction for things like claiming benefits because the health professionals tend to ignore this side of improving the quality of life for people living with MND.

    We are just a message away from offering support and advice so please don’t be shy to ask.

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

  4. #4
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    Welcome Moll, sorry to hear of your Dad's diagnosis. My Husband was diagnosed last July, I know that it is difficult. People on here are very helpful with any questions or advice

  5. #5
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    Hello Moll
    Sorry to hear of your father's diagnosis and it can be overwhelming, but there is lots of advice and support here. Mnd can seem to move very rapidly, but can also then slow down. Like your dad, I rapidly developed footdrop and weakness/tiredness, but then things slowed significantly and that was now nearly 7 years ago, so there can be some hope, sometimes. I think we have to have hope.
    Best wishes to all your family
    Olivia

  6. #6
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    Thank you for all your replies! It’s hard isn’t it knowing that everyone has a different progression...the unknown can be frightening and frustrating. But yes, Olivia, hope is good ��

  7. #7
    Forum Member Ellie's Avatar
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    Hi Moll,

    Welcome to the Forum and sorry about your Dad.

    Just to add that, if he hasn't seen a Speech & Language Therapist (SLT) or had a Respiratory assessment yet, they should be on his radar.

    I hope he gets a break in his rate of progression.

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

  8. #8
    Forum Member Lynne K's Avatar
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    Hi Mill, sorry about your dad's developing symptoms. You have had good advice already so I won't repeat. Take care, 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.

  9. #9
    Hello Moll, the MND diagnosis is really hard to come to terms with. My husband was diagnosed last May, he deteriorated so rapidly I was really scared. However things have settled down and we make the best of each day. This forum is great for help and advice.

  10. #10
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    Hi Olivia, that was such a hopefully reply. I was recently diagnosed with mnd. And your reply has helped me focus on being more positive

    thank you, take care

    Sheila

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