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Thread: A new life

  1. #1
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    A new life

    Over a period of six months we were batted between a Respiratory and ENT consultants. My husband has pulmonary fibrosis and gastric reflux. It was only when the Respiratory consultant discovered via two CT scans that there was another problem. He referred him to a neurologist. Three weeks and an MRI scan later a further test showed bulbar MND.
    The devastation was worsened because his childhood friend had died twenty five years earlier with MND aged just 57. We had shared his gradual deterioration visiting Disney with Pat in his wheelchair being fed through a RIG. My husband now cannot speak and can take liquid orally. He has been fitted with a RIG because we know that will be his only means of nutrition.
    He can no longer play bowls or golf. From being a fit 82 year old he is now an invalid. I am a carer and my role as a wife is disappearing.

  2. #2
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    Patsy, sorry to hear your bad news, I was diagnosed 4yrs ago two weeks after my 65th birthday and retirement. All my mates played golf but they liked me as had sailing boat but not anymore. You will find everything you need to know from this site and your nurses, my nurses very good. Luckily I have two sons who live nearby and we just got back today from a full family half term holiday with grandkids. The weather was great up near Blackpool no rain.
    Best wishes John

  3. #3
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    Hi Patsy
    Welcome to the forum, but so sorry your husband has to endure this awful illness as well as what he already has to put up with .
    You will find people on here who have a wealth of knowledge about MND as they have been living with it a long time.
    Feel free to ask any questions you might have, or if you feel like having a moan or vent you frustration . There is always someone to listen to you and give words of comfort and advice
    Take care
    Love Chris

  4. #4
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    Thank you both. We live on the IOW and have already had support from nutritionists, OTs, speech therapists and this morning we received an Ipad with a speech function courtesy of MNDA. Getting used to the detail has been a steep learning curve. We are supplied with meal replacements and supplements and the purple syringe for RIG flush. The balloon maintenance was more tricky because the syringes were supplied by the District nurse and the sterile water was unobtainable. I've just found out from our hospice nurse that we only need boiled water. The sterile option was apparently because it was thought erroneously that it made the balloon last longer!
    Our problem at the moments is that the area of skin under the plastic of the Rig is not healing and constantly wet and messy. We've used water wipes but unsuccessfully.
    Our hospice has a day centre where my husband can have physio. So we are very grateful for all the support.
    I have to admit that I just feel numb. I function on autopilot. We have a daughter on the Island and three other children on the mainland who visit regularly. The Island daughter does shopping and running around but after his diagnosis she has had mental health issues. I think I ought to feel something but I can't.

  5. #5
    Forum Member Ellie's Avatar
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    Hi Patsy and welcome.

    Sorry to read about your husband's diagnosis.

    Yes, boiled water is perfectly good for the balloon, just make sure it's cold before using it!

    When was the RIG procedure?

    Does your husband have the long feeding tube or a button?

    Does it rotate easily i.e. do you think it fits well?

    Does it constantly leak or just after use?

    Is the area washed, dried thoroughly and allowed to breathe i.e. no dressing?

    Sorry for the inquisition!!

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  6. #6
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    RIG performed on 5 April (long feeding tube) when he was first diagnosed. It was done in advance because we were warned that should he need it in an emergency it was possible that they would not be able to react quickly. He can still eat soup and pureed food. I flush the feeding tube daily and change the water in the balloon weekly. He showers daily and dries it but it gets red and sore during the day.It seems to fit well although the plastic patch does move around so it is taped in place with micropore.
    many thanks

  7. #7
    Forum Member Ellie's Avatar
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    Thanks Patsy.

    There should be a gap of 5mm between the plastic bit and his skin, and it should be able to be rotated as is - it needs to be rotated daily anyway. If the plastic is too near his skin, it will more than likely get sore. Could that be the problem?

    Some people tape the port end of the tube to the skin to keep it out of the way.

    If he'd prefer, he could swap the long tube for a low profile button - it's an easy switch as his tube is a balloon retained tube.

    Love Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

  8. #8
    Forum Member Terry's Avatar
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    Hi Patsy and welcome to the forum;

    Sorry to hear about your husband and like many partners of Mnd people, you end up being a carer and not a partner.

    You should speak to your Feeding Tube nurse and get help and advise. They provided my with sponge like pads to put under the disc to help keep the area dryer and some cream to keep the skin protected.

    You can get leaks to start with from RIG operations and sometimes infections so it's best to ask your nurse.

    I've hard a Tube for around 4 years and have only put straight tape water in it but maybe boiled water could be better.

    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.

  9. #9
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    My first tube lasted eight years and I've had the second one for three years. It's always oozed a. Bit of "gunk" but has never been infected.

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