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    New diagnosis

    Hi my wife has just been diagnosed and would love to get some help in understanding what happens next my name is peter

    #2
    So sorry to hear this ,, u will get great help from joining this forum from some great people as I did a couple of months ago ,, just be strong and take 1 day at a time

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      #3
      barto so sorry to hear of your wife's diagnosis Peter. You'll find that post diagnosis support services hopefully kick in...various referrals made initially by your neurologist team and GP.
      This forum is a good place for advice & support and MNDA as you'll see has huge amounts of advice and good people to talk to.
      It can all feel incredibly overwhelming but manage as much as you can in small steps. Good luck & welcome👍
      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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        #4
        Hi Peter

        Sorry to hear about your wife's situation. You're very welcome here. At this early stage I'd suggest you find out who is going to co-ordinate her care. In most NHS areas there is a specialist nurse or an equivalent who can help to steer you through what needs to be done. The exact order of activities will depend on your wife's specific symptoms and whether her first problems are with mobility or speech and swallowing etc. If you can't immediately identify the specialist nurse, get in touch with the MND Connect team for help. They can also put you in touch with your local branch of the MND Association who can provide lots of practical advice and support.

        Best wishes.
        Diagnosed October 2020 - See my blog at https://www.myneurodiary.com

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          #5
          Welcome Peter. It's big and scary I know but take it little by little and remember we are here to support you. You will have bad days yes but then you will have great days too. Stay Strong. 🤗😀😁✌️xx
          Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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            #6
            Hello Peter. I think, I as Linda said, the main a services should kick in now you have a diagnosis. You may want to explore voice-banking but SALT team should advise. Tell wife she's not alone xx

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              #7
              hi peter. its a huge thing for both of you. i was diagnosed 4 months ago. i use the forum as a search engine using the advanced search. you will have lots of appointments etc over the next few months. i found the occupational therapist invaluable re walking aids, cutlery, mattress etc. my advice is get a note book started. when you meet the many medical people involved with your wife you can jot their contact details down. try to be organised as it soon can get overwhelming with who does what etc. hopefully your mnd nurse will do a home visit soon. they gave me a book about mnd. i think you can order one from the association. its a hard read and both of you may want the shock to settle and decide how much you both want to know what is coming. some do and some dont. mnd connect are at the end of the phone and i used them when 3 wks post diagnosis i had not had any referals. maybe take some time to let it sink in. big hugs
              Diagnosed May 2021 bulbar onset als.

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                #8
                barto A warm welcome to you both, Peter.

                If you feel up to it, perhaps you could tell us how your wife is now?

                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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                  #9
                  Hello Peter, all I can say is that shortly you will become totally overwhelmed with people coming to the house, If I had to do it again at the beginning I'd try and calm it down a bit, I didn't know any of what was about to unfold, why would I

                  even now, down the line so to speak, I have too many people coming into the place, they don't seem to come in ones sometimes in threes, an OT might bring someone from adaptations and perhaps a trainee,

                  As an example, when Albert was being assessed for a ceiling hoist about 3 weeks ago I counted 20 people came through the place within the following 2 weeks what with the assessor, OT, Adaptations, 2 electricians (Twice) and then the hoist installer, it can be too much

                  How many will come when I get the Hoist Training is anybody's guess,

                  this week we have none scheduled................but then again it seems there's always something ticking in the background so that could change in an instant

                  There's a template somewhere which might come in handy - it lists all the necessary people about to come into your life - you just jot down the phone numbers - like a hit list - my local MND branch gave me it,

                  If you would like to know what happens to your wife physically that's a different issue - and no one on here will be able to tell you that - everyone with this lousy disease is different,

                  Best wishes

                  Sue

                  Husband Albert diagnosed PMA Feb 21

                  Comment


                    #10
                    Hi Peter. Welcome to the forum no one really wants to join. Here you will have many friends that can help and advise. We laugh, shout, scream an cry but most importantly we support each other.

                    What Shelley has said about getting a notebook is very wise and important. Write down the names and numbers of everyone you are dealing with and most importantly what their role is. It can very easily blur.

                    You can ask about anything on the forum, nothing is sacred.

                    Stay strong and find time to laugh as well as cry.

                    Richard
                    Richard

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                      #11
                      Hi Peter, sorry about your wife’s recent diagnosed. As people’s have said the earlier days are hard but mostof us have taken one day at a time.

                      Everybody who has already advised you I agree with especially having your wife do voice banking. Look at Speak Unique and Acapela for information and discuss with your wife’s Speech Therapist when you both get chance.

                      Take good care of yourself, 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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                        #12
                        I must first say thank you for ur support knowing that there are people like u out there makes me so humble.I now know I am not alone with ur help I know I will get through this thank u

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