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Thread: Living alone with mnd

  1. #11
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    [QUOTE=kd1;89852]Hi,
    ; for me the OT has been crucial and the MND nurse useful.
    Thank you kd1. Yes at the moment my OT is going to be key to my decisions. Another question. Have you set up a lasting power of attorney to carry out financial transactions if/when required? I've been told that a solicitor can be assigned to do this but I have no idea yet how much it would cost.

  2. #12
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    Quote Originally Posted by Ellie View Post
    Hi Panniertank,

    Just wondering if you're linked in with your local hospice?

    They're usually good for knowing what's what and are an extra layer of help, so to speak - social worker, OT, physiotherapist, nursing etc.

    Love Ellie.
    Hi, I am ashamed to state I am not entirely sure what is meant by hospice. I have assumed it is a specialist hospital but the NHS also refers to "hospice care". When diagnosed I was referred to a specialist MND clinic. This has OT's , physios, neurologist, speech therapist, respiratory nurse, MND nurse, palliative therapists etc. I can attend the clinic every 3 months, but I can contact them at any time in between by phone.

  3. #13
    Forum Member Ellie's Avatar
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    Pannier, hospices are sanctuaries for those of us with life limiting conditions (forget about the old institutions where people went to die, they are SO much more that that nowadays!)

    They are an extra resource available to us, in addition to the MND Clinic and community services, and often succeed in procuring equipment when others fail by intervening on our behalf. They can also be invaluable by helping with form filling etc. and can be great advocates for us, not forgetting the chance to have a pampering massage...

    Find your local hospice here https://www.hospiceuk.org/about-hosp...find-a-hospice and have a read about it.

    You have to be referred by a healthcare professional for many, but some take self-referrals - it'll say on their website.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #14
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    Yes, I set up a PoA early on. Cost a packet (solictor) but the local hospice has a tame legal expert who would do it for almost nothing, as I found out too late. As Ellie says, they offer all sorts of help. I went to an 8 week course on coping with illness.

  5. #15
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    Thank you kd1and Ellie for your advice.

  6. #16
    Forum Member MNDConnect's Avatar
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    Hi panniertank

    Iím sorry for the delay in us responding to you. It looks as though youíve been receiving some excellent advice from the other forum users.

    Speaking to your health and social care professionals is a really good suggestion. They can help to guide and support you with decision making. It is perfectly normal to feel a bit overwhelmed by all of the decisions that you are faced with.

    Care provided by Social Services is means-tested and they would carry out an assessment for you to let you know if they are able to provide care, how much care they would provide and how much this would cost. You can contact the Adult Social Services Team at your local council to ask for this.

    We produce an information sheet on social care which might be useful and can be found here

    As Ellie mentioned, the local hospice can be a really good source of support. Peopleís perceptions of what a hospice is can often be misleading. A hospice is all about symptom management and living with a life-limiting condition. You can often access physiotherapy and occupational therapy through the hospice as well as complementary therapies, counselling and emotional support. Itís certainly worth being referred to the local hospice.

    We produce an information sheet which explains a bit more about the role of the hospice and it can be found here

    Please do know that the MND Association is here to support you as well. MND Connect is the helpline for the MND Association and you can contact us for anything. Whether you have a question or concern, or if you just need someone to talk to. We are available either via private message on the forum, via email at mndconnect@mndassociation.org or on freephone 0808 802 6262 Monday-Friday 9am-5pm and 7pm-10:30pm. Please donít hesitate to contact us if there is anything that we can do to help.

    Best Wishes
    Rachel

  7. #17
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    May 2019
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    Thank you Rachel. My next MND clinic appointment is next week so I will make a list of questions to ask them based on your's and everyone else's advice in conjunction with my own thoughts / concerns.

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