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David R RIG Fitting

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    Stonehengeman
    Forum Member

  • Stonehengeman
    replied
    I like David R was diagnosed with Progressive Bulbar Palsy. I had noticed that my speech was deteriorating some 4 or 5 years ago, but it was not until I moved house to Kegworth and signed up to the local Dr Surgery that I followed up the problem. I was diagnosed in Jan 2018 and since then my speech has deteriorated so that my wife cannot understand me. I use a boogey board as I find that easier than fiddling with the iPad. A number of correspondents have mentioned various computer programmes and I have tried ClaroCom but was not impressed.
    I can still swallow, but now it takes me twice as long to eat. I had a RIG fitted on 12 August 2019 in anticipation of when I could no longer swallow. It had been drilled into me that the RIG should not be left too long. I am lucky in as much I have not lost weight.
    I have had problems with discharge around the tube since day one and still am. I do not use it for feeding other than a 50 ml flush every morning. At one stage the RIG popped out and I had to rush to QMC, Nottingham for it to be reinserted. I have had the RIG tube replaced with a low-profile button about 4 months ago but I continue to have seepage. My wife has to clean around the tube every day and insert a pad between the button and my skin.
    This has been going on daily since August when the RIG was first installed.
    I don't know what to do! I have written this only so that others appreciate that a feeding tube is not right for everyone.
    Stonehengeman
    Forum Member
    Last edited by Stonehengeman; 30 April 2020, 19:39.

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  • Deb
    Forum Member

  • Deb
    replied
    Hi Lesley,

    So sorry to hear your mum's operation has been postponed. This must be so scary and upsetting for the both of you and I really hope she gets it done soon.

    In the meantime, I hope you are able to access support and advice. My MND nurse is always my first contact and I make sure she is up to date with any changes although this seems to vary depending on the area you are in.

    Thinking of you both,
    Love Debbie x

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  • Deb
    Forum Member

  • Deb
    replied
    Hi David and a warm welcome to our friendly forum from me.

    I am so sorry for your diagnosis last year but thank you for your positive posts about your RIG. It's really reassuring to read this and it will have helped lots of us considering a feeding tube in the future.
    It's good to hear you are still active.

    Take care,
    Love Debbie x

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  • Ellie
    Forum Member

  • Ellie
    replied
    Oh Lesley, that's awful to hear, I'm sorry for you both.

    If your mum's MND Clinic and her MND Nurse don't know the PEG procedure was cancelled, please make sure they know and that your mum is now an urgent case as she is at high risk of losing weight and of aspiration.

    If you haven't read the guide on eating & drinking, it's a good source of useful info, as well as recipies for food suitable for those with swallowing problems. https://static.mndassociation.org/ap...b-PDF-2017.pdf

    I read back over your older posts and wonder if your mum ever found a comfy NIV mask?? If she gets breathless during the day, using NIV for a while during the day would help but, if her mask hurts her, well that's not going to encourage her to use it, is it!!! Don't feel bad for insisting on trying different masks - honestly, there is a comfortable out there and she might need different ones for daytime and night, eg a nasal one may suit days and a bigger one for bed.

    This is the type I use now - it's called an Amara View and it's by far the most comfortable mask I have ever used, no contact with the nose bone at all but it sits just under the nostrils and covers the mouth too. Similar masks are the ResMed F30 and the Dreamwear hybrid.

    Amara View.jpg

    Big hug to you both.

    Love Ellie.

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  • David R
    Forum Member

  • David R
    replied
    Hi Lesley,

    Sorry to hear about your mum and I hope she gets the tube soon. I can sympathise with her eating issues, it did get to me a bit when stuff kept falling back out of my mouth! this is were the tube takes away the stress and makes every thing seem a lot easier. I just miss all the tastes and get jealous when I see people posting photos of lovely food on facebook they’ve just had.

    I think things will improve soon with hospital procedure availability and you’re mums tube should be considered as urgent.

    Regards

    David

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  • LesleyJ
    Forum Member

  • LesleyJ
    replied
    Hi David

    Welcome to the forum. My Mam was diagnosed with bulbar in November 19. Her speech is getting worse by the day and she is very breathless. She has her Peg procedure booked for last week which was cancelled. I am so worried as she is struggling to eat now, it’s getting worse. She’s normally so strong but cried tonight when she couldn’t eat her tea. I will tell her your experience of the Peg. I just hope she can get it done soon.
    Lesley

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  • miranda
    Forum Member

  • miranda
    replied
    Hi David. I’m sure your positive post will have reassured many people. I had my PEG fitted soon after diagnosis but have only ever used it for medication as I can still manage a soft food diet. As regards text to speech apps - unfortunately the one I used, Speak It, is no longer available. I tried Predictable but find it a bit frustrating. I currently use Speak but it’s very limited. I’m waiting for alternative suggestions from Speech Therapy.

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  • David R
    Forum Member

  • David R
    replied
    Thank you Ellie,

    I love the voice the Lost voice guy uses (Graham) sounds a lot more sophisticated than my voice, joked to my wife that I’m going to become a comedian! and probably better understood.
    Got to keep positive and make the most of life while we can.

    Regards

    David

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  • David R
    Forum Member

  • David R
    replied
    Hi Doug,

    I’m pleased this may have been of help to you, I know exactly how you feel, I felt like it was step downwards and giving in to MND, I had actually booked the procedure three months before having it fitted and canceled it myself at the last minute for those reasons!
    But now rather than a step down it has lifted me up and empowered me giving me much more control of my daily routines without the fears of finally aspirating which I think would have happened.

    I hope you’re able to come to terms with it at some point soon.

    Regards

    David

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  • Ellie
    Forum Member

  • Ellie
    replied
    Originally posted by nunhead_man View Post
    If you have a feeding tube when you can still swallow is this simply because your recovery is quicker and better and you get used to it sooner?
    Yes indeed Andy, the stronger one is before the procedure, the easier, faster and fuller the recovery.

    My progression was initially quick, so I guess that was the catalyst for the Neuro telling me to get the PEG procedure but the big indicators for timely tube placement are weight loss and respiratory function.

    It can be hard to get the timing 'right' - in reality it's not 'wrong' to have a tube 'early' as harm can be done whilst on a waiting list for the PEG/RIG procedure...

    Love Ellie.

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  • Ellie
    Forum Member

  • Ellie
    replied
    Sorry David, I use an inbuilt PC text-to-speech facility to communicate with eye gaze as my hands don't work to use a phone. I never voice banked - it wasn't readily available back in 2007 - so I don't use any Communication/Speech Apps, but plenty of others do so hopefully they can help? (Barry, Miranda?)

    And, yes, losing one's voice is very difficult but as you also say, not much we can do but adapt & conquer, just as you got a feeding tube to enhance your quality of life and your prognosis, voice apps let you continue to communicate.

    I see 'Lost Voice Guy" now does 'Live At The Apollo"

    Love Ellie.

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  • Doug Carpenter
    Forum Member

  • Doug Carpenter
    replied
    Hi David

    Thank you ever so much for posting a detailed and positive description of your RIG experience. It’s of enormous help to people like me who know the theory but have not yet faced the reality.

    To me, a RIG has always seemed a watershed moment in MND, one I’ve been inclined to avoid.

    I’m most grateful!

    Doug

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  • nunhead_man
    Forum Member

  • nunhead_man
    replied
    Good morning Ellie

    Thank you for posting – as you know I am arm onset and I can eat by myself at the moment but obviously there will be a time when I can't.

    Interesting that that was the point at which your medics suggested a feeding tube and as you say rather earlier than I thought it might be suggested but I will now keep this in mind.

    If you have a feeding tube when you can still swallow is this simply because your recovery is quicker and better and you get used to it sooner?

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  • David R
    Forum Member

  • David R
    replied
    Hi Ellie,

    Thank you for your reply.

    Re the tube feed, I must admit, one of the reasons I posted that is because I have met three people with MND who have totally refused it and two of them have deteriorated a lot quicker than I think they would have done had they of had the tube early enough, but that’s only my opinion, I could be seeing it wrong!

    Can I ask you what app or software you use to create speech to communicate with people around you? My voice is almost gone, I did do a speech bank a year ago but because my speech was a bit slurred at the time it’s not really very good. I’ve tried Predictable App with other voices as well but I’m not really happy with it partly because you can’t edit a typed message if you make a mistake so you have to delete it and start again which is a bit frustrating. I’m now in contact with another app called Prologuo2go that “The Lost Voice Guy” used on Britons Got Talent show to see if that might be better. I'm not really not looking forward to this step but we don’t have the choice do we. So as you have experience I’d appreciate any advice you can offer.

    Best wishes

    David

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  • Ellie
    Forum Member

  • Ellie
    replied
    Hi David and a warm welcome to the Forum and thanks for your positive post.

    Sorry about your diagnosis and happy to hear you're "lucky" to be still active.

    Wholeheartedly agree with you about how good it is to get/have a feeding tube and some medics broach the subject rather gently and without giving the person real life information on the pros and cons of the subject.

    Ultimately it is an individual's choice, which ought to be respected, and it's more common than one would imagine to reject getting a feeding tube, but the majority of us do get one but unfortunately some folk wait longer than they should.

    I thought my doctor was mad when I was 'told' it was time to get a feeding tube - I was eating and drinking normally - but it was timely and my recovery was relatively easy. That was not too long after my ALS diagnosis and my arms & hands were declining quickly meaning I'd soon lose the ability to feed myself.

    Stay safe.

    Love Ellie.

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