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Mum's diagnosis this week. Feeling lost + devastated

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    Mum's diagnosis this week. Feeling lost + devastated

    Hi all
    I am so pleased I have found this wonderful forum. πŸ™πŸ» here's my story:
    this week mum was confirmed as having MND after seeing neurology twice last week and again today. Mum had a small stroke on June 23rd 2021 and has been in hospital since. Since December 2020 my sister and I (she's 36 I'm 39) and gp suspected mum had a form of dementia.( I live 300 miles away from mum and sister) but after her stroke when visiting mum in hospital we noticed that her speech was getting worse, mum's weight is dropping and her hand fuction has got much worse .she can only hold a Tommy tippee cup to drink from as hands do weak. Mum's been moved from the stroke ward to s palliative ward in the hospital and is now getting super care. We have been told to sort a POA. Which I have printed off and can't bare to look at at the moment. My sister asked what mum's prognosis is and we were told approx 12 months. My head is spinning snd I don't know where to start with everything. Mum's 73. Looking back it started about 3 years ago when her speech changed a bit. Any advice or help massively appreciated. Thanks for reading.

    Lydia

    #2
    Hi Lydia, so sorry to read about your mother and I can fully understand the turmoil you will all be feeling just now. This forum is in my opinion a great place for support, advice and friendship.

    Having been in your position myself I would suggest making early contact with MND Association Connect team. You can do this via a PM on this forum, by phone or email the details are on the front page. I would be asking to be put in touch with the relevant Area Support Coordinator who in turn can put you in touch with an Association Visitor. The AV is not just there for your mother but for the whole family and will be able to offer practical help at what is understandably a very emotional and bewildering time. The fact that you are 300 miles away from your mother isn’t a barrier to you getting this type of support as most of the contact since the pandemic is via phone.

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      #3
      Hi Stargazer it certainly is scary but try and take little bites. Get a boogie board and a txt to speech app on a smartphone. I use single words on my board when in Hospital. As for life expectancy well how long is a piece of string? I have Bulbar Onset. I am mute, tube fed, my right hand is very weak and I wobble when I walk. I was given 1-3 years of living and in January it's two so who's to say I won't make three? Really cool user name btw! Stay Strong. We Are Here To Help. πŸ‘πŸ€—πŸ˜˜πŸ˜xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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        #4
        Hi Lydia, sorry about your mum’s diagnosis. It is a bombshell to receive. I hope that you have your mum around for longer than expected. These forums are great for support, tips, and friendship. Take care, 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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          #5
          Stargazer sorry to hear your mum's diagnosis and health issues...it's not easy for any of you to manage. As others have said MNDA can offer amazing advice and support & there are many people in the forum who will always share tips and info.
          Hope your mum is home soonπŸ™πŸ‘πŸ€—
          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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            #6
            We offer advice and support too! πŸ˜‰πŸ˜πŸ€—πŸ˜xx
            Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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              #7
              Hello Stargazer - welcome to the forum. Sorry your mum had to join us. See if you can find out what form of mnd she has , then do a search on this forum for information to learn as much as you can so you have an idea what to expect and your mum's likely needs xx

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                #8
                Thank you for all your words of support and info.im sorry we are all here and are having to go through this in one way or another 😣 We haven't been told what type it is yet. But mum speech was first with her slurring words founding drunk (she foesnt drink,) then she had a twitch with her jaw. Now both her hands are badly affected - she wouldn't be able to use a mobile phone or tablet. I was reading alot on here and I think it's too late to bank mum's voice, as that's dlready gone and her words are just about recognisable, but that is also getting worse. When mum had her needle/ muscle test done this week (at a diff hospital) when she was getting ready with my sister she said 'I'm not going home am I" , she's terrified to ho home and atm sis and I are happy she's in and mum is happy there as her new nurses are lovely. When she was on the stroke ward a nurse ground her on the floor saying she'd had a fall but was ok 🀬
                Am I right in thinking, I can access support and advice on mum, even though I'm miles away ?
                I'm going to start reading the power of attorney- are there any tips on filling this massive document out? Thank you again.

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                  #9
                  We got PoA done by solicitor but mnda should be able to advise. I assumed I was too late for voice-banking but SALT team should advise. These services should have been set up xx

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                    #10
                    I never had my voice banked hence people who meet me for the first time assume I'm a Northerner when I'm actually a Southern Softie. πŸ˜‰πŸ€—πŸ˜πŸ˜˜xx
                    Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong πŸ€—πŸ˜˜πŸ€—πŸ˜xx

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                      #11
                      Stargazer A warm welcome to the forum.

                      It sounds as if your mum has Bulbar onset ALS - Bulbar onset means it started in that region first, i.e. her speec, and ALS is the most common form of MND.

                      Because your mum is currently an inpatient in a hospital, she has access to their SLT, Dietitian, OT services, which may or may not be as comprehensive as services she could access in the community, so hopefully it'll be the former 🀞🀞 (it can depend on where she lives)

                      Re communication: instead of a mouse, your mum could control a speech app or PC through switches, a head camera or with her eyes and this is where the SLT comes in. Speech apps come with voices, so voice banking isn't a prerequisite. On the low tech end, there are printable alphabet sheets and common help type phrases available online if the hospital don't provide them.

                      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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                        #12
                        Stargazer Hi Lydia. Welcome to the forum and I am reallly sorry to hear the reason for you joining. Here you can ask anything and get advice, you can shout, scream, laugh and cry. We have all done and support each other.

                        Richard
                        Richard

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                          #13
                          Stargazer I'm sorry you find yourself here. It's an excellent forum with amazing people πŸ’•πŸ’•
                          in regards to the POA our local Age UK did it. It cost around Β£220 to do with them. If you go to a Solicitor it costs heaps more. Please bear in mind they are taking ages to come through. Sadly we didn't get my Dad's in time.

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                            #14
                            Thanks Ellie. Mum has not seen a dietician yet ( she's soy, wheat dairy and gluten intolerant), she had 2 sessions with speech therapy, and a social worker.(all of those were before her diagnosis this week) I don't think mum would be able to use anything computer tbh.ive laminated words and phrases for her to use. Shes a shell of her former self. Her brain isn't the same and comes across as if she has alzhimers. I'd agree with guessing it to be bulbar onset als.
                            daught21- thank you. I wasn't aware what age uk did fully, this is very helpful. πŸ™πŸ»

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