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    Wedding worries

    Hi all. I have a big worry that is stressing me out. I've arranged to try a catheter. But I'm on to the next thing now! My son is getting married in April and instead of looking forward to it I'm dreading it.
    As I need to be hoisted on to the toilet I'm now obsessing with the thought of having to go to the toilet while there. I'll hopefully have a catheter but what if I need the other? Any tips? Unfortunately I don't seem to be regular so I could need to go anytime. The venue is an hours drive away so I can't just pop home.

    #2
    Oh Pink.. I really feel for you. I understand how you feel even if I can't offer practical advice.

    Our son got married in November and our youngest was his best man. I was so happy and proud but frustrated that I was worried about ramps and accessible toilets. It wasnt how I had envisaged his wedding with me in a wheelchair but in the end I was just glad to be well enough to be there because they were so happy. When they were about to say their vows he came and pushed me beside him so I could see properly.

    I was like you very worried about toilets but we managed, with a little help. People will just be so pleased to see you and your son will be so proud of you.

    I really understand how you feel because I was really worried and anything out of our narrowing comfort zone is scary. I hope you find having a catheter is helpful for you and wish I could offer you more tips.

    Love and hugs
    Debbie x

    Love

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      #3
      Hi Pink, so sorry for your worry. The only thing that I can think might help is to have a clear out the couple or three days before and eat no ruffage to hopefully delay the next performance. I'm not the expert so maybe run this suggestion by your specialist nurse or GP. If this isn't a good thing to do then maybe one of these would have a better suggestion. Love, Lynne x
      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.

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        #4
        Hi Pink;

        You could look if any changing places are near the wedding venue on this site:-

        http://changingplaces.uktoiletmap.org/

        I no it's not ideal as is wearing some type of pad. But if you sort and know what's there and how to get in it could give you some little peace of mind and the problem.

        Love 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.

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          #5
          Hello Pink,

          I hope you can overcome your anxiety and enjoy the occasion. Our son is getting married next week in Tokyo and the Japanese tradition is to allow up to 2 years for a ceremony. Fortunately he and his wife to be, who is Japanese, want the ceremony here in the UK in August so I don’t have to endure a 12 hour flight.
          Ask someone to check out the wedding venue and establish how long you will be there. Once you know what you are faced with you will feel more relaxed and should enjoy the event.

          Best wishes,
          Barry x
          I’m going to do this even if it kills me!

          Comment


            #6
            Hi Pinkelle. I have been thinking about you. Is the venue at a hotel - if yes maybe you could hire a room and a portable hoist? A bit expensive I know but maybe for peace of mind. I have also been thinking on the same lines as Lynne. If someone is having a colonoscopy they have a eating regime and then an enema on the morning of the procedure to totally clear them out. Maybe the district nurses would consider this? if you had a very low fibre, light breakfast before the wedding and possible took something like Imodium on the day there is no way you would need the loo. A bit drastic I know but it may be worth it for peace of mind. Our daughter got married last April it was wonderful and Tony just about managed to walk her down the aisle with our son following 'just in case'. A month later and he wouldn't have been able to have done it.

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              #7
              Thanks for the advice people. Like you Deb my youngest son is is best man. Its in an old private school so I doubt if the toilets will be up to much. It would have been good if it was in a hotel then as you say devonmaid I could have hired a room.

              Comment


                #8
                It's such a shame that we can't look forward to special days because of this worry, Pink.

                I don't know if this will help you but I did check out the venue before and they were really helpful about seating and making sure there was enough room for my chair at the top table. The disabled toilets were rather small so they arranged for me to use one at a local centre or a nearby pub. All a little undignified but it put my mind at rest and everyone was so helpful and accommodating. They even e mailed before the wedding to see if I was worried about anything.

                It was a wonderful day and I was walking on air for weeks, not literally unfortunately. Just enjoying the photos now. I really hope you get sorted so you are not too worried and you can enjoy the day. Maybe your MND nurse might have some suggestions about medication that would help.

                Love Debbie x

                Comment


                  #9
                  Oh Pink I do feel for you and can understand how you feel.
                  My daughter has just booked her wedding for the end of May this year! It was that or waiting until September. Sooner rather than later we all thought.
                  I’m hoping I will be able to use the sack truck but as we all know a lot can change in 4 months so I might well have the hoist problem too.
                  As always our fellow members offer good advice.
                  It really should be something that we are excited about and looking forward to. I always get emotional at weddings and I’m worried I’ll have a complete meltdown and ruin everything.
                  I so hope you can get the catheter and it works for you. The other issue, I hope you can get professional advice and find some reassurance.
                  And I thought our biggest worry was going to be what to wear!
                  Take care love Helen x

                  Comment


                    #10
                    Hi Pink,

                    The bowels issue is a difficult one to address, as much depends on whether or not you’re normally constipated and how often you “usually” go to the loo - daily, 3x a week, or whatever. But if it were me with the same hoist issues as you have, here’s what I’d do… (I usually go 3-ish times a week, but there’s no real predicting when, so I need to use laxatives)

                    I’d try to keep my bowels as empty as possible in the lead up to the wedding and that means Movicol and having someone to bring you to the loo. I know Movicol can be strong if you’re not constipated, so you may only need ½ sachet in ½ the amount of water. You’ll know if you need a full sachet or not. Don’t take any on the day.

                    I'd also bring Imodium Instant Melts as a "just in case" - of all days to get diarrhoea, this is not it. And I'd bring anti-nausea meds, but that's just me!

                    The venue should have an accessible loo but it may not be suitable for a (hired/borrowed) portable hoist.

                    Like others, I really feel for you Pink and I hope you will be able to enjoy the special day.

                    It may not be the ideal way to spend the few days before the wedding but needs must…

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

                    Comment


                      #11
                      Had a visit from my mnd physio today. Told her my worries and she is straight on it. Contacting the venue and asking about access and toilet size etc. Looking in to getting a hoist there (To hire if poss) if it's going to fit. She is a diamond and is always problem solving for me. Feel alot better now. Having catheter fitted on Monday.

                      Comment


                        #12
                        Sounds great Pink. Good luck with getting a hoist and getting used to your catheta. Lynne x
                        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.

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                          #13
                          Good Luck with it all Pink

                          Comment


                            #14
                            Hi Pink,

                            It's great to hear that things are getting sorted out and that your physio is being so helpful.

                            Hopefully you are less worried about things and you are able to look forward to the big day. As mother of the groom, you are definitely entitled to lots of pampering before the event! - including getting your hair, nails make-up done etc (the full works!).

                            I hope everything goes smoothly for you from now on.

                            Love and best wishes to you and your family,
                            Kayleigh xx
                            Last edited by Kayleigh; 7 February 2019, 22:47.

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                              #15
                              Right..... After 3 attempts to get catheter in nothing is draining away. She leaves it in incase my bladder has gone into spasm. Nurse come back to check an hour and a half later. Still nothing and I'm bursting. So out it comes. Going to try again in a few days. She thinks it could be the mnd that could have made the bladder go into spasm but other mnd sufferers have them! I got so upset I just think it's going to happen again next time. Really uncomfortable now as well x

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