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    MND Newbie

    Hello. I’m Charlotte. I was diagnosed with MND in July last year at the age of 48.
    I have a ton of questions, but wondered if anyone had advice for the following two please:
    When (if relevant) did you decide to change bathroom layout? I had a rather nasty fall last night getting out of the bath (despite having rails) so it’s on my mind.
    Where do you buy pretty front fastening bras? I know this is really shallow but I’m disabled not blind and I don’t want to go from wearing pretty lingerie which boosts my well-being to ugly, beige underwear.

    Welcome to the family. Nobody wants to be here but everyone loves the company. 😁😍x
    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx


      Hello Charlotte, Good you found this forum - sorry you had to - We had a wet room just before Christmas - it took 3 weeks to install - at that time my husband would have been 18 months down the line and now doesn't walk at all.......this all takes time even from getting the quotes in and the measurements done for special shower chairs etc etc - I would get on with it........see if you can do it through your local authority - they will come out and assess you and the property

      As for the bras - cant help you I never wear them - nobody goes out so who cares is my motto!!!! good on you for continuing to do so

      Best wishes

      Husband Albert diagnosed PMA Feb 21


        Hi CW and welcome to the forum.

        In terms of your bathroom question I will say I left it too late and ended up rushing to get it done which caused a lot of stress for my wife who was the sufferer. If you intent to go down local council funding then it can take any months just to get the ok for the funding.Then many many months to get the work done. Even if you go down the pay for yourself route you will be looking at lead times from reputable companies a few months.

        My view is if you have an issue with the bath then get your OT involved now. They will understand the local situation and be able to advise on what the adaptation should look like for you taking into account your individual situation.

        In terms of your second question It’s outside my comfort zone so I’ll leave it to the ladies.

        Wishing you all the best.


          Welcome Charlotte - can't offer bra advice (at least I don't think so) but best wishes from me.


            Phil quite right outside your comfort zone!! - they are the most uncomfortable things ever invented - ha
            Husband Albert diagnosed PMA Feb 21


              Originally posted by Suefromwakey View Post
              Phil quite right outside your comfort zone!! - they are the most uncomfortable things ever invented - ha
              If I carry on putting weight on at the rate I am I might need similar advice 😁


                Charlotte just another thought have you considered talking to your OT about a bath lift. We found this bit of kit a great help in taking some of the stress away from Ann enjoying a bit of a soak in her fav bubbles.


                  Hello Charlotte and welcome.

                  Falls and resulting injuries are a major issue so I suggest you don’t leave it too late to use a walking aid. I altered my bathroom long before I really needed it but I need it now. Progression of the disease differs in everyone but one thing that is certain is that you won’t be safe using a bath. Some but not all councils will offer funding via a grant to make alterations and your OT is the first point of contact. I self funded my alterations and if you go down this route then ensure the builder is aware of VAT exemption.

                  Sorry I can’t offer advice on the second point.

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


                    Hi Charlotte and welcome. I second the advice given already to contact your OT about your bathroom and where your current bathroom is situated. A wet-room is what you’ll need.

                    About front fastening pretty bras. I know where you’re coming from. I bought two pairs to try and unfortunately I could not pull the fasteners around to the front. I couldn’t even reach them as the elastication pulled these behind me. I can still fasten regular ones at the front then twist them around my body to the correct place and then pull the straps up (with great difficulty and often called on my husband to help). This is the method that I’ve always used. But it takes me ages and it’s a big struggle. I end up nackered. So I only put bras on single handedly occasionally. I ditched all of my lovely boned expensive bras about a year ago. It was getting painful to put these on. I tried my sleep bra of a day (full cup non boned support bra from M & S) and haven’t regretted it. I bought several more of these. Now I have help from my husband most days.I get the bra in place and he fastens it at the back. This is easy and much quicker. The only issue that I have with these bras is that they show above the neckline of a couple of my dresses. But I could look for another design. There’s lots of choice in non boned bras, some very nice but will never match the look and feel of a well fitting boned, and in my case balcony bra. Despite nobody seeing what’s underneath my clothes I’ve always been very particular as it seems are you. But needs must. Good luck, Lynne x
                    Last edited by Lynne K; 13 March 2021, 12:04.
                    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

                    I'm staying positive and taking each day as it comes.


                      Thanks all so much 😊


                        CW100 Hi Charlotte, ouch falling in the bathroom sucks. My leg gave way and I fell in the bathroom, banged my head pretty badly on the sink. I don't wear a brassiere but have you tried M&S.

                        Dennis. X


                          Hi Charlotte
                          I'm a carer for my husband and he's had many falls. It's really dreadful.
                          I just checked m&s but doesn't look like they do front fastening bras. I felt sure they would. Have to say I agree with Lynne they can be hard work trying to do them up.
                          welcome to the forum.
                          Denise xxx
                          when i can think of something profound i will update this.


                            Welcome to the Forum, Charlotte - nice to meet you.

                            If you've had a fall in the bathroom and you only have a bath, I would say it's time to think about getting a level access shower, for your safety.

                            I had my bathroom converted soon after my own diagnosis - by 'soon', I mean 3 months, but my balance was quickly getting worse and my legs were starting to lose strength. As I said, safety is the key consideration - injuring a foot or breaking a wrist is the last thing you need!!

                            Many of the front-fastening bras you find on the High Street can look frumpy, to me at least !! The European and Asian sites, e.g. Shein, have pretty ones but watch the sizing on the Asian sites.. Some sports bras also have front-fastening.

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


                              A warm welcome to the forum, Charlotte.

                              I'm sorry for your fall and hope you're not too sore. It gives you such a shock. As others have said its best to get the ball rolling with home adaptations as soon as you can as they do take time.

                              Before I was diagnosed I was unable to use our bath and I was struggling with the step up to our shower so we started straight away. We had our bath taken out and the bathroom made into a wet room. Although we had to fund this ourself the OT was involved in the planning. Our council had an agreement with the wetroon fitters so it was the same price as if they, the council had paid for it and it was cheaper than any other quotes we had. .. im not sure how common this is.

                              Im sure you are aware how differently we progress but as Ellie has said safety is the most important thing.

                              Its certainly not shallow to want pretty bras... anything that boosts our wellbeing is vital ! I know it sounds frivolous but I really miss having my hair and nails done in lockdown. I'm afraid I can't help you with bras... I'm an m and s girl.

                              The forum is a great place for support and friendship. There is usually someone with an answer so do ask if you have questions.

                              Take Care,
                              Love Debbie x