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    Hi All
    I'll just jump right now - a month ago today my mum passed away after an extremely short battle with MND. She was only diagnosed in November (after having to pay private due to a 3 month waiting list for the conduction test - that's another story). My mum was incredibly brave throughout - she never once cried for herself and never lost her humour. She really was an inspiration but I was just not ready to loose her (not that there is ever a "right" time).
    It all started back in July last year when she fell down the stairs as her legs gave out. We all believed it was a problem with her spine (as she had really bad back ache for 4 months). Anyway she was rushed into hospital and I spent the week going back & forth to see her. I always remember it as she said "well thats a rubbish way to spend to your 35th birthday". We were told at that stage she had FND and sent him. Then by August she was bedbound and I became primary carer.

    I'll be honest I'm so angry with the NHS - I totally understand MND is hard to diagnosed but it wasn't until the end that anyone actually seemed to care. Even the weeks leading up to her dying (her breathing started to become laboured) not one GP would come and see her. It ended up me just ringing and ambulance and lying to get them to come see her (and I glad i did as they were able to prolong her life longer).

    The MND was so aggressive that she never got to see a specialist or the MN team at Salford.

    As you can probably tell my mind is a little erratic and unfocused right now. We had the funeral a week ago which to be fair was exactly what my mum wanted (a celebration of life) and she choose literally everything. I have friends and family all around me but I just feel alone and lost. Full of anger and floundering. I'm angry that back in July she should have concluded all the tests then - not just kick her to the curb with "thats an outpatient test". Obviously something was seriously wrong.

    I don't know what I'm looking for - any advice maybe?

    Sorry for the randomness!

    Hi Marcus and welcome to the forum,

    I am very sorry to hear that your mum has passed away. Please accept my condolences.

    Please don't apologise for what you may see as being random words. There is nothing random or insignificant about what you have said. They are your heart-felt thoughts and feelings and you are always welcome to share them with us on this forum.

    You hardly had time to come to terms with your mum's diagnosis before she sadly passed away, and so it is totally understandable that you are feeling a mixture of many emotions right now.

    It sounds like your mum was a wonderful lady who lived life as fully as possible and always stayed brave and positive about things. I think that she must have been very proud of you for always making sure that she was looked after properly. It sounds like you are an extremely kind, thoughtful and caring person. I hope you find comfort in knowing that you did everything you could to make the most of the time that you shared with your mum.

    It is sad to hear that the NHS wasn't supportive enough. Unfortunately, although we are supposed to get a certain standard of care after being diagnosed with MND, it's not good that in reality the provision of care is often very patchy and can vary throughout the country.

    I cannot imagine the pain of your loss, but hopefully the many happy memories you have of your mum will help to ease your pain.

    Please feel welcome to join in on this forum as much as you would like to. We are a friendly forum family and we try to support each other as much as we can.

    Take care,
    Kayleigh x
    Last edited by Kayleigh; 4 February 2019, 21:24.


      Complain! Go through your MP. Where were the district nurses in this? What help were you given at home? Hospice? Marie Curie? We are in Cumbria but under Preston and they are very good. But my husband was diagnosed elsewhere (it took 6 months) and then tranferred to Preston. However, we are both from Greater Manchester originally. Presently I am complaining through Tim Farron, our MP, about his treatment in our local hospital. It won't help him but I do it in the hope it will help other MND patients in the future.
      So you were told last July she had MND? But diagnosed Nov?
      Yes, your thoughts will be erratic for a while especially after such an aggressive form of MND. Take a bit of time then consider making a formal complaint if you think it justified.


        I am so sorry for the loss of your lovely Mum x


          Hi Marcus. I'm very sorry for the loss of your lovely mum so fast from a very aggressive type of MND. As Kayleigh says you are bound to be distressed since you had no time at all to come to terms with your mum's MND.

          It took me over a year to get a diagnosis after my first neurologist dismissed me. You could look at my previous messages for more information. My second neurologist at Salford nearly a year later was great and got me appropriate tests before he'd commit to a diagnosis. I'm going to my 12 weekly MND Clinic with Amina Chaouch at Salford Royal Wednesday afternoon. She's lovely.

          I'm sorry that you and your mum did not experience the best that the NHS has to offer. The early stages of MND are apparently hard to diagnose, but your mum seemed to be well along the MND journey so surely it would have been easier to spot. The slowness of getting appointments for tests was ok for me but sadly your mum missed out because of it.

          Would you consider getting some counselling? Talking about your feelings with a non judgemental professional might help. But come back here whenever you feel like offloading or just passing the time. Take care, Lynne
          Last edited by Lynne K; 4 February 2019, 22:45.
          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.


            Originally posted by shrew View Post
            I am so sorry for the loss of your lovely Mum x
            Thank you


              Hi Kayleigh - Thank you for your kind words, it does mean a lot. I was actually thinking about speaking to a counsellor as before the funeral (and after her death) I was doing OK but since burying her my head has just turned into chaos. Like every little thing just feels magnified. The one thing that has helped was her telling me I was the best thing in her life.

              Hi PSJ, I did speak to my MP and he was just "sorry for your loss, blah blah blah". My mum only saw a district nurse once (who was lovely to be fair) but just going on about bed sores all the time. As she hadn't seen the team at Salford it was very limited support. In July she was diagnosed with FND (Functional neurological disorder) but obviously carried on deteriorating. The consultant that eventually saw her in November and recommended private for the test (to speed it up) gave his consultation time for free as he believed it was unfair the way my mum had been treated. I still can't shake those words my mums GP said to her the last time she spoke to her "What do you want now?". My fear is if you are more vulnerable than my mum (she was a "bolshy bitch" - her words) you wouldn't get any support.

              Hi Lynne K, thank you for your words. I did speak to Amina however we were on a waiting list so it never progressed. Then the whole progress of just getting a wheelchair. My worry is that no-one really were that bothered until it was the end stages. None of it really matters now though - I just miss her deeply


                Hello MM,

                I’m sorry to read about your mum and please accept my condolences. You mention counselling and people I’ve spoken to say it helps. You may want to try your local hospice as they have a good service.

                What you say about MP’s is often correct in that they pay lip service to complaints about the NHS. I don’t want to criticise all of the health services but it does appear to be a postcode lottery.

                I hope you find peace in time and will be able to look back at the happy memories with your mum.

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


                  Hi Marcus,

                  It is lovely to hear from you again.

                  In my experience having some counselling is a positive thing to do. It is going to take time for you to adjust to life without your mum, and hopefully counselling will help you to come to terms with things.

                  You might be interested in reading some information on the 'Cruse Bereavement Care' website. It includes information about bereavement counselling and support groups.


                  As well as grieving for your mum, you are probably in shock because you never expected your lovely mum to pass away so soon. Please be kind to yourself. You should be proud of yourself for having such a close relationship with your mum and for looking after her so wonderfully.

                  Coming to terms with the loss of a loved one is a gradual process. You might feel like your world has been shattered, but you are a strong person, just like your mum was, and you will manage to build your life up again. You will be able to have happy times again, just as your mum would want you to.

                  I hope you find comfort in the treasured and happy memories of your mum. She will always be with you, in your memories and in your heart.

                  Hopefully, you have support from family and/or friends. Please feel welcome to return to this forum for support or advice, whenever you would like to.

                  Kayleigh x
                  Last edited by Kayleigh; 5 February 2019, 14:50.


                    Hello Marcus, I'm so sorry to hear of your dear mums passing.
                    My hubby was diagnosed in May. We went private after a useless GP and consultant rheumatologist. I can understand your hurt and anger there. We all want what is best for our loved ones.
                    I hope it's a comfort that you did everything you could.
                    Please look after yourself.