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Mother newly diagnosed in Suffolk

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    Mother newly diagnosed in Suffolk

    Hello, my elderly mother has recently been diagnosed with MND so my brothers and I are on a steep learning curve. Two questions: does anyone have experience of being cared for through the hospital in Bury St Edmunds as Colchester would be closer to home, but we’ve been told the team at Bury are good (with nothing to compare them to). And we’re awaiting a first meeting with a multidisciplinary team to discuss ongoing care, so any tips on what we need to ask/know would be great. She’s got bulbar symptoms, has lost her speech and is having difficulty swallowing properly at this stage. Oh, and it’s nice to meet you, even in the circumstances!

    #2
    Kate T A warm welcome to the forum Kate.

    I have no knowledge of either hospital, but if Bury has an MND multidisciplinary team, it's probably best for your mum to attend there for her first few appointments and get baseline tests and assessments from the various disciplines.

    She'll get a feel for the hospital and its staff and, if she wants to change hospital, or if travelling to Bury gets too arduous, she could maybe switch to Colchester. It's definitely worth asking at her first appointment if she can do shared care and what can Bury offer that Colchester cannot.

    She should also get a referral to her local hospice for support and services - hospices are *not* only for end of life care, they are also for those of us with life-limiting conditions, and our families.

    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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      #3
      Welcome to the best site in the world for help, advise and empathy. We mostly use humour as a coping mechanism so be prepared. Stay Strong and ask absolutely anything 🤗😚😘😍xx
      Bulbar started Jan 2020. Mute and 100% tube fed but mobile and undefeated. Stay Strong 🤗😘🤗😁xx

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        #4
        Hi Kate T and mum. I and others on here also have bulbar onset mnd. I would just suggest making a note of things / changes will need whilst time to do them. Love to both x

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          #5
          Hi Kate. Welcome to the site. I’m not in your mum’s area so cannot answer your questions but good luck, 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.

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            #6
            Hi KateT
            when you meet a member of the MDT team I suggest you have a few questions ready to ask maybe written down.
            Yours moms loss of speech and swallowing problems seem to be the main issues so I guess that’s where you start.
            Maybe you and your mom need advise on communication aids?
            You may both need advise on swallowing issues from a dietician and nutritionist.?Speech and language therapy(SALT)team.
            How is your moms mood might need discussing?
            Maybe your mom has her own questions she needs answering.
            No doubt you will be left with contact numbers/ names.

            I remember when I had my first assessment 14 months ago...I typed a list under different headings that were important to me to know about.
            I wrote ..for example ..Housing adaption issues, Benefit entitlement, mobility issues, What ongoing support will I receive etc.

            I used a book to record names and contact details as I progressed so my hubby and family would know who to contact if I was no longer capable of doing so.We continue to use that and have added lots more contacts such as physio, psychological / counselling. District nurse team,Respiratory team, neurologist, Carers support,wheelchair services......the list has grown.

            Hope the first meeting goes well for your mom and yourself.
            Best wishes
            Mary

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              #7
              Hi Kate T
              Here is the best place for your questions.
              Or even when you just need talk with someone.
              I found a lot mental support here when I just felt drain of energy.
              You aren't alone.

              I'm bulbar onset MND /ALS since 29 June 2021

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                #8
                Thank you everyone. I can’t tell you how my mother is feeling, because I have no idea and she’d probably be cross with me for talking about it, but my brothers and I are very grateful. Clearly there are a lot of fantastic people, you included, on here.

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                  #9
                  Hi Kate, I’m in Ipswich and have Bulbar onset and under Ipswich hospital and St Elizebeth Hospice, they’ve all been very good and the MND specialist nurse in St Elb is always ready to help. Also the MND hold and meeting/get togethers of MND patients every month at the moment in Ipswich which is well worth visiting as its so helpful to meet others going through the same and learn things.

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