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Awaiting diagnosis

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    He was probably looking out at you mowing the lawn smirking to himself thinking it's about time that woman got to know the lawnmower

    If you don't laugh at crisis times as these are, you just cry...

    Hope you can relax a bit over the long weekend with the family xx
    Last edited by Ellie; 18 April 2019, 15:48.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.


      I’ve cried most of the afternoon now that just made me laugh! Funny I was thinking when I was mowing the lawn just how spoilt I was!
      No long weekend for me! The joys of being a nurse! 12 hour shift Saturday and Sunday but I’m off Monday and Tuesday. Hope you enjoy your break and thanks for the much needed laugh


        Dear Kitty.

        I feel for you and your husband. I remember how frustrating it was to have to wait for test results. Hopefully your husband will get an appointment with a neurolgist very soon.

        Ellie's post made me smile and I'm glad that it cheered you up too.

        The amount of stress is we are under is ridiculous sometimes - but I try to have a laugh and joke with my family whenever I can.

        Although - my husband isn't too impressed when I 'jokingly' remind him not to miss the edges out when he is mopping the kitchen floor! He's not nearly as good at mopping as I was - but with my 'helpful' instructions (or as he says, 'bossy' instructions!LOL) he's getting much better at it! LOL

        I hope you are able to get some time to relax and rest. Hopefully, your family and friends are helping you out with things, as it must be extremely tIring if you are having to work shifts as a nurse as well as running your home by yourself.

        Kayleigh xx
        Last edited by Kayleigh; 19 April 2019, 11:33. Reason: Realised my spelling mistake - had put moping instead of mopping - husband is quite good at both though! LOL


          Hi Kitty,

          Please dont apologise.. waiting for test results is agonising and extremely frustrating. It is hard to cope when you dont know what you're coping with. Also, you and your husband are not getting the practical and emotional support you need to make life easier and safer.

          Ellie's and Kayleigh's posts really made me chuckle too and I am glad it made you smile.
          Ellie's made me smile because I never cut the grass either and just to be contrary, now I really want to!
          Kayleigh, my husband never washes the corners of the floor either ! If I am feeling tactful I ignore it and dont look ! Like you we do laugh and joke about the strangest things.

          Kitty, I hope you manage some rest and relaxation after your long shifts. I know its easier said than done, but you do need to look after yourself.

          Love Debbie x


            Debbie and Kayleigh,
            Thank you so much for your replies and your support. From your replies I’m gaining more and more useful insights to how my
            Husband is feeling and coping. Yes it’s good to laugh at things as well, humour can be a great medicine.
            On another note I emailed consultant re MRI results and have received a reply this morning saying a letter is being sent out to my husband today. Hopefully some news soon. Will keep you all updated and again thank you for all your kindness. Oh and Debbie every time I mow the lawn I will think of you and be thankful that I’ve had the chance to do it!


              Hi Kitty;

              It's good therapy, if you automatically think of funny things when doing something.

              I try to see the funny side of things and people.

              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.


                Thank you. I’m going to try to see the funny side of things more often, way better than crying. Just need a change in mindset. Thanks again for reply


                  Hi everyone,
                  Hope you all had a nice Easter. My husband got a letter this morning re MRI results. . He has been referred now to spinal consultant as results indicate tension on the spinal cord. He has appointment on 29th May.
                  Thanks again to you all for all your support and kindness
                  Kitty x


                    Oh Kitty, that's good news insofar as there is a non-MND explanation for your husband's symptoms.

                    Hope he gets full information and a treatment plan at the May appt.

                    Best wishes to you both.

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


                      Thank you Kitty for letting us know about your husband's MRI,

                      Although I know you have another month of uncertainty and worry, I have my fingers crossed for you that it is a treatable condition.

                      Here's hoping you get some answers in May and until then take care of each other.

                      Love Debbie x


                        Debbie and Ellie,
                        Thanks for your ongoing support. Such a lovely supportive forum. I wish you all the very best. I will post again after my husbands appointment at end of May. I started his story here and think it’s right to let you all know his diagnosis.
                        Again thanks for reading/listening
                        Kitty xx


                          It's always lovely to hear from you Kitty.

                          I hope the appointment goes well and your husband is able to get some treatment for his spinal tension very soon.

                          Being in limbo, without a diagnosis, can be extremely stressful and unsettling - but hopefully your husband is becoming less anxious about things now.

                          Hopefully, your husband will be more interested in the option of using a wheelchair, so that he can get out and about more with you and the rest of the family.

                          It took a little time for me to get used to using a wheelchair (and I started to use it gradually, so that I could get used to it) but its definitely worth it - especially as I don't want to miss out on fun days out with my family!

                          I had never really noticed before how many people do use mobility scooters and wheelchairs - but since I have been using one, I have realised that they are a very popular and convenient mode of transport for many people - any worries about looking 'out of place' in my wheelchair have very quickly subsided! It's just those pesky high kurbs that get on my nerves!

                          Love and best wishes to you and your family,
                          Kayleigh x
                          Last edited by Kayleigh; 28 April 2019, 15:18.


                            Thank you for your kindness. I have a wheelchair for him from shopmobility charity for £20 a month. I have it in boot of car for just in case. He has yet to use it. Our local council elections are on Thursday and I know he’s very keen to vote so this may be his only option. Yes I think once he sees the benefit of it,it will be used more and more. Again thank you for your kindness and I wish you all the best. I will update you all after his appointment and then I will leave the group. Thanks again
                            Kitty x


                              For future voting we can all register for postal votes. I did it a couple of weeks ago. Lynne
                              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.


                                You can also apply for an ongoing proxy vote