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New to site ...coming out of denial phase, I think!

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    New to site ...coming out of denial phase, I think!

    My husband was diagnosed with MND in November 2020, two years after being told he had a trapped nerve in his neck which was operable, then being told he had Parkinsons and finally the MND diagnosis. His symptoms began in his hips and left side, and he has been using a walker to get about in the house.

    The shock of the diagnosis is immense. When I go to bed I fall asleep in tears and wake up in tears. 8 months down the line, I actually almost had a full nights sleep last night. I cannot focus, have lost all motivation to do things and it has taken me all this time to read this site and begin to accept help. The physio mentioned how we grieve for what we have lost in terms of the things we used to be able to do, and the future plans we had for retirement have all now gone. So, we both need to change and adapt to a different sort of future ...be positive etc . I listened and appreciated she was trying to help but I cannot accommodate these thoughts at the moment.

    I work part time but worry most of the day - my phone is glued to my hand just incase my husband falls again at home. Work sort of keeps me sane but I realise that I will have to stop shortly. I was trying to plan ahead but now realise one day at a time.

    Lastly ... is anyone else having a nightmare with NHS Wheelchair services. My husband has been waiting since August 20 for a powered chair and it is my weekly battle which causes me immense anxiety. This piece of equipment would transfer our lives. Gone through to PALS now but I could really do without this additional stress.




    #2
    HelenS hi I'm a newby too👋. There will be ppl on here much wiser than me about the practicalities however regarding the wheelchair service I wonder if your husband has a social worker...helps to have them nudge other professionals.
    I'm recently diagnosed so I'm living in a permanent state of anxiety & grief. I just keep saying to myself take one day at a time.
    Hope you find support here now you've taken a big step.I'm finding lots of info and very many friendly ppl.👍
    Initial diagnosis 7-4-2021 'suspected MND' confirmed by 2nd opinion 4th June 2021 ALS. Began with R foot limp and lots of falls. Generally weak. Mostly terrified.​​​​​​

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      #3
      HelenS A warm welcome to the forum Helen.

      May I suggest you do counselling? Even if you don't see yourself as 'that type', your emotions are naturally all over the place after your husband's diagnosis, which must be both physically and mentally exhausting.

      Your husband can be referred to his local hospice, which is a great resource for people with life-limiting conditions, offering various services from nursing to counselling (for you too) Their OT could probably try to hurry on that wheelchair - I think 10mos is the longest wait I've heard of 😡😡

      Sorry you've had to join us, but congrats on making your first post and you'll get advice, support and laughs from the forum family.

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

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        #4
        Hello from me too Helen. Afraid can't help with wheelchair services but others here I'm sure will be able to offer advice. xx

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          #5
          hi Helen, welcome. Although I lost Mick I come on here most days. I could have written your post. I too cried every day, I was worried sick at work too. Has your Husband a pendant to press if he falls?sorry about the wait for the wheelchair

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            #6
            Hi Helen, the denial phase is not so helpful, and it’s great if you are beginning to move on a little. Not easy and we all deal with it differently. There is a lot to think about, plan and organise once you do get to the next stage and it made me feel much more positive and in control of the situation.
            In Hertfordshire my physiotherapist referred me to the wheelchair service. It worked out well for me, but processes do seem to vary based on geography.
            Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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              #7
              Hi Helen, Many of us can relate to your situation.I was diagnosed in June 2020 with MND and was referred for a powered chair about November 2020.It finally arrived a few weeks ago so a 7 month wait.I think your husband didn’t have the MND diagnosis when he was referred to wheelchair services?As Ellie said it’s worth getting a OT /physio to pursue this on your husbands behalf.Also covid seemed to hold things up.

              I live in Warwickshire and wheelchair services did ring me periodically to update me.I also kept them updated that my mobility was so much worse.Now it’s arrived I haven't yet got outdoors with it as need them to access my ability outdoors in it first apparently. Indoors my house isn’t ideal for such a big chair...I can envisage lots of scrapes on doors and walls😂

              Like you and your husband we had plans for our retirement that had to change drastically after diagnosis.(I was 65 when diagnosed)With help from the palliative care team, counselling ,family , friends and my Catholic faith we reached acceptance.That doesn’t mean it’s plain sailing and we don’t shed a few tears ..less often lately though that could change at any time.

              I hope you get some support on this forum Helen.We all cope differently but there is no denying that MND changes not just our lives but the lives of our partners, spouses, family, and friends.
              With my best wishes
              Mary

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                #8
                Hello Helen and welcome from me.

                As others have said I recommended counselling and ask your husband’s consultant if they offer the Commend acceptance therapy in your area. It is being rolled out in many areas of the UK where they have an MNDA care centre.
                I’m going to do this even if it kills me!

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                  #9
                  Hi Helen, what a nuisance waiting so long for a powered wheelchair. I hope that a light weight manual wheelchair was given already. In my area you get one of these early on. I hope that the powered wheelchair arrives very soon, Lynne x
                  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.

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                    #10
                    Hi Helen

                    my husband was diagnosed 2 years ago. It's a terrible shock and takes a lot of getting used to. Perhaps those are the wrong words it's something that is difficult to get used to. Taking one day at a time and trying to make the most of those days. Trying to deal with different situations and how to cope. Well this is a great place to come. Someone will have been there and done that and will share their experiences. You will never be alone.

                    love and hugs Denise xxx

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                      #11
                      Hello Helen, this situation is the pits init,

                      My husband was given a self propelling manual chair which is hopeless so for the last 6 months he's been using his travel mobility scooter in the house, by chance he is off today for a wheelchair assessment - don't know why as he's already had 2. I think he may well be given some kind of power chair. Apart from 2 trips to see the consultant he's not been out of the house since December as he doesn't feel too confident on the scooter outside - so I am about to stress the need for a proper chair now as he no longer walks.

                      As for coming to terms with this thing - that another whole issue

                      Best wishes

                      Sue
                      Husband Albert diagnosed PMA Feb 21

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                        #12
                        Powered wheelchair definitely then Sue. Good luck for your husband getting one quickly, Lynne x
                        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.

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                          #13
                          Well I now realise why he had to have another assessment this was practically a full blown driving test, 30 minutes out on the street etc etc - we had no idea, anyhow he "Passed" and is now "Certified" his super dooper chair will come next week after a few adjustments - yet again I cannot fault Wakefield Council for their help and assistance,

                          Tomorrow will be another assessment for a Hoist................another new normal I guess!
                          Husband Albert diagnosed PMA Feb 21

                          Comment


                            #14
                            Hi Helen and a warm welcome to the forum,

                            I am so sorry for your husband's diagnosis. I totally understand about denial because it took me a long time to come to terms with. It sounds silly now but every time I told someone I had MND I was as shocked as they were. I think your physio is right about grieving as we have had to change and adapt our dreams for the future.

                            I really hope your husband gets his powerchair soon as the right equipment really helps us to adapt. The wait must be so frustrating for you both.

                            Take care of yourself too,
                            Love Debbie x

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                              #15
                              Originally posted by Suefromwakey View Post
                              Hello Helen, this situation is the pits init,

                              My husband was given a self propelling manual chair which is hopeless so for the last 6 months he's been using his travel mobility scooter in the house, by chance he is off today for a wheelchair assessment - don't know why as he's already had 2. I think he may well be given some kind of power chair. Apart from 2 trips to see the consultant he's not been out of the house since December as he doesn't feel too confident on the scooter outside - so I am about to stress the need for a proper chair now as he no longer walks.

                              As for coming to terms with this thing - that another whole issue

                              Best wishes

                              Sue
                              Sue, my husband was also given a self propelling chair even though he cannot use his left hand very well. He is 6ft tall, I'm 5ft and expected to push him in this extremely heavy chair. We were sent another light weigh chair but I now have a frozen shoulder ....so we cannot wait for this powered chair. A month ago, when he had his 'driving test' we were told his chair was in the warehouse and we would be able to collect it in 4 weeks! Being confined to the house is driving him insane ... and me! I sincerely hope you have a better experience than we have had with the powered chair. Take care and thank you for taking the time to reply. I am not only new to this site but relatively new to social media too!

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