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  • Ellie
    replied
    Ange Do you know what type of MND you have Angela?

    You seem to have slow progression given your long road to being given a diagnosis, which might have an impact on which services should be priortised for you. xx

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  • Ange
    replied
    Thank you Mary, for the information given, can i ask are you on a medication called riluzole.

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  • Mary C
    replied
    Hi Ange, I got contacted within a week from diagnosis by MND nurse and then hospice.Having the hospice nurse arrive sent me into orbit as thought they must be expecting a quick death.Not the case....the nurse to introduce the service and a baseline assessment.
    My hint would be get a notebook and write names and contact numbers in and a brief summary of what they do.
    I rarely see my GP as no need as have support from palliative care team in community and local hospice.
    Then I have regular respiratory appointments, check ups with a neurologist, zoom sessions with a psychologist 6 weekly.
    I really hope you get contacted soon by health professionals to offer support.
    Best wishes
    Mary x

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  • Suefromwakey
    replied
    Hello Ange, get ready is all I can say..........at the begining very quiet the wheels turn slow..............BUT, then you will be totally overwhelmed by people contacting you - I didn't know who on earth was coming next at one point, it just doesnt seem to gel at the start

    Sue

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  • matthew55
    replied
    Hey Angela and welcome from me. I know how shocking it is when you find out so please ask anything you want. We are here to support you 🤗🙂😊☺️xx

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  • Ange
    replied
    I started with a limp and then footdrop and falling asl couldnt balance, i saw one neurologist he left got appointed another, he left never saw him, then got referred to another which they ruled out mnd, but I wanted to told what I had, so got referred to another hospital where all tests where done again, 2 and half years later got told I had mnd. Everything as been so stressful, Drs no help at all.

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  • Gordan1111
    replied
    Speech and language therapy. Should keep eye on swallowing and arrange voice-banking x

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  • Ellie
    replied
    Originally posted by Ange View Post
    What is Salt, that everyone as mentioned ???
    Speech and Language Therapist.

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  • LindaB
    replied
    Speech and Language Therapy....help and advice regarding swallowing and talking.👍🏻

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  • Ange
    replied
    What is Salt, that everyone as mentioned ???

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  • LindaB
    replied
    Originally posted by Ange View Post
    Thank you lindab, my Drs are not very good, I have to follow things up myself, but don't know how long I will be able to to that
    Once other teams kick in I hope your GP situation improves. My hospice nurse meets regularly with GP at the practice. Good luck and keep posting👍🏻

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  • Ange
    replied
    Thank you lindab, my Drs are not very good, I have to follow things up myself, but don't know how long I will be able to to that

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  • Gordan1111
    replied
    Think it will come Angela. I had quite a long interval from diagnosis to things being put into place. You should get visit from Salt team and appoint for mnd clinic but it wouldn't any harm to remind them you're still waiting. Welcome to the liquorice all- sorts anyway. xx

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  • LindaB
    replied
    Ange the first few weeks were the most difficult for me as I did feel a bit 'abandoned' it took 4 weeks for the neurology department to type their report and send to GP and make onward referrals. Fortunately then the community Neuro rehab team picked up my case and then several visits from SALT, Physio, OT.
    It does feel as though nothing is happening and then suddenly you'll find yourself bombarded with visits.
    In the meantime you should have local counselling services available if you want to talk through how you are ....your GP should be able to advise on this and GP should also be available for you to talk to...even virtually.
    As others have said M ND Connect is also a brilliant contact for advice and support.

    Glad you found the forum....there's always someone on here and we're a friendly bunch 🤗😘

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  • PeterPan
    replied
    Hi Angela, so sorry that you’ve had to join us, but you’ll definitely find people to talk to on this forum. Welcome! MND is different for everyone, but there’ll always be someone here who can listen and help with practicalities.

    Take one step at a time, but you do need to find out how you are going to be supported fairly soon. The way support is provided seems to be different entirely by geography - it really is different everywhere. Your GP or neurology consultant would be good people to ask. If the consultant seems inaccessible, see if you can reach him/her via an email to their secretary.

    In time you may need support from an OT person, a physiotherapist, speech and language therapist, dietician, community nurse, MND specialist nurse, also possibly a local hospice and palliative care team etc. I’m very lucky in Hertfordshire - I do have contact with all those parties (and the National Hospital team in Queen Square who are brilliant), and the best thing about it is that they talk to each other in a pretty coordinated way. Hope it’s like that for you too in due course.

    Best wishes

    Leave a comment:

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