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Thread: Hello everybody!

  1. #1
    Forum Member
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    Hello everybody!

    Been reading these forums sporadically for a couple of years now, and thought now would be a good time to introduce myself.

    My name is Ashley, I'm 34 and live in Petersfield, Hampshire with my wife Lisa. She is 38, and was diagnosed with MND in May 2014. This came as a massive shock - as I'm sure it does to everyone - and came only 6 weeks after our only child passed away suddenly. (Her name was Amelia, she was 3 years, 4 months, and she suffered an epileptic seizure in her sleep).

    So it's probably an understatement to say we've suffered a rough few years, but we continue to fight, and smile, and laugh. We ain't giving into MND easily. I say "we" as Lisa and I have a fantastic group of friends, family and specialists that we couldn't do this without them.

    Lisa is pretty much confined to her wheelchair, but can still stand for short periods, and can shuffle her feet a little. Her left hand has very little movement, but she is still pretty strong with her right hand. Her speech is slurred, but she can still make herself understood. She struggles to swallow certain foods, and has the occasional coughing fit. And also her breathing capacity was down to 65% at her last test back in October.

    She has recently had a Closomat toilet fitted, and is awaiting funding for ceiling hoist. We also have a new up-front WAV on order, and Lisa is awaiting a date to have a RIG fitted.

    Anyway I've babbled on long enough. Just wanted to introduce myself, and send my love to all of you guys out that who are battling this horrible disease.

  2. #2
    Forum Member Terry's Avatar
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    May 2012
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    Hi Ashley and welcome to the forum,

    What a terrible time your family had. lisa is so young to get Mind and to lose Amelia is horrific.

    Thanks for the introduction and hope that we can help each other.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  3. #3
    Forum Member GrannieAnnie's Avatar
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    Jun 2014
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    Hello Ashley, you have had rough couple of years and Lisa is young but its good you have support from fantastic family and friends. You have come to the right place as we all support one another. I live in Fareham and am under the care of Dr Halfpenny at QA hospital. Do you attend the MND coffee morning at the Rowans. I haven't been for some time now but plan to start going again once the weather perks up a bit. There is flu and colds doing the rounds here so for the moment I am avoiding places where I might pick up something. Keep in contact through the forum. Love to you both. Ann. xx

  4. #4
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    Hi Ashley. You and Lisa have certainly had a difficult time over recent years. To read about Amelia is so sad. I was diagnosed coming up two years ago and have found the forum a great source of information and friendship and I am sure you will find it helps to be in touch with people in similar circumstances to you. We regularly attend our local area meetings and would recommend them. Best wishes to you both. Philip and Carol.

  5. #5
    Forum Member Barry52's Avatar
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    Mar 2012
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    Newark on Trent
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    Hello and welcome Ashley,

    You have both suffered some heartbreak over the last few years and I am pleased to hear you can smile and stay positive throughout. Lisa will enjoy getting out in the new WAV and you have made a good choice with the chair upfront version.

    Please feel free to ask for advice, although after almost 3 years you both will have amassed a lot of knowledge. I so miss Hampshire where like Ann I lived in Fareham during the 80's. Of course you were in short trousers then.

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

  6. #6
    Forum Member Ellie's Avatar
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    Oct 2012
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    Hi Ashley & Lisa,

    My heartfelt condolences to you both for your tragic loss of little Amelia.

    I’m glad you’ve posted Ashley. Fwiw, Lisa is doing well for 3 years with ALS/MND.

    Sorry to get technical on you, but do you know why Lisa is having a RIG procedure rather than a PIG or PEG procedure? It’s just that the RIG procedure has more complications than PIGs & PEGs – minor enough issues but annoying and we can do without those!! Her breathing numbers shouldn’t be a factor @65%.

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

  7. #7
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    Welcome Ashley

    Wishing you, and your wife all the best.

    CCxx
    .

  8. #8
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    Sep 2015
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    petersfield hants
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    Hi Ashley, so glad you have written a post I know it is a big step. We are going to the rowans coffee morning tomorrow, if Lisa is up for it, it would be nice to see you both. Best wishes nicky

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