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  1. Thread: Lorna passed away

    by luce
    Replies
    16
    Views
    6,546

    Hi Kevin, so sorry to hear of Lorna's death. I...

    Hi Kevin, so sorry to hear of Lorna's death. I note that she was diagnosed the same day as my mum. Glad she lived each day to the full, I am sure you will have lots of wonderful memories, that will...
  2. Thread: Night Night DAD

    by luce
    Replies
    13
    Views
    5,792

    So sorry to hear about your dads death. I am glad...

    So sorry to hear about your dads death. I am glad it was peaceful for him. Hope that you and your sister can be a support to each other... Live with that sparkle that your dad once had and live...
  3. Replies
    3
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    3,477

    Hi I am sorry to hear about your nan - it really...

    Hi
    I am sorry to hear about your nan - it really must be very difficult for her, and you.

    You asked about choking- from my understanding, although it is possible to choke to death with MND i have...
  4. HI Geraldine We did a few sessions of family...

    HI Geraldine

    We did a few sessions of family therapy (sister, mum and I) - mum thought that sister and i would find it useful. Mum engaged with her lightwriter, she could prepare text in advance...
  5. Thread: My Dad has died

    by luce
    Replies
    28
    Views
    14,874

    Thinking of you Helen, so sorry. Lucy

    Thinking of you Helen, so sorry.
    Lucy
  6. Replies
    19
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    9,429

    Hi Unbelievable... Outrageous!! My daughters...

    Hi
    Unbelievable... Outrageous!!

    My daughters were 3 and 8 when my mum had her "probable" diagnosis, so of course she we deteriorating before. Before mum was ill she was my child minder as we...
  7. Thread: Rubbish In Mouth

    by luce
    Replies
    16
    Views
    7,328

    Hi re the oral hygiene, can't stress how...

    Hi
    re the oral hygiene, can't stress how important this is. you can get tongue cleaners/ scrapers. I know mum found this useful. We also liaised with a friends who are dentists and also hygienists...
  8. Thread: holidays

    by luce
    Replies
    4
    Views
    3,096

    Hi Louise I remember looking on the web when my...

    Hi Louise
    I remember looking on the web when my mum was alive, there are hotels that have adaptations, including closomat loos etc. a key thing is looking also at the destination as with some train...
  9. Thread: Bye Dad....

    by luce
    Replies
    33
    Views
    16,539

    So sorry to hear your news Cookewitch take care...

    So sorry to hear your news Cookewitch
    take care of yourself, love and hugs
    lucy
  10. Replies
    33
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    16,907

    Magic and Cookewitch, I am so, so sorry to hear...

    Magic and Cookewitch, I am so, so sorry to hear your news.
    sending love and strength, take care
    x Lucy
  11. Replies
    8
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    6,299

    Hi glad you have been able to speak with your...

    Hi
    glad you have been able to speak with your mother in law about her wishes

    The best way perhaps for you and your mother in law to explain to the nurses that in no instance does she want to go...
  12. Replies
    8
    Views
    6,299

    HI Sorry to hear about your mother in law. ...

    HI
    Sorry to hear about your mother in law.

    Deciding what is the best option for your mother in law - a difficult time for you all. All i can say is involve her fully in the meeting, let her voice...
  13. Replies
    25
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    22,324

    Mich - Thinking of you today going to the funeral...

    Mich - Thinking of you today going to the funeral directors and beginning all the arrangements for your mum's funeral. Not an easy time, but remember that they will help you through as I am sure your...
  14. Replies
    25
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    22,324

    Hi So sorry to hear about your mum dying...

    Hi
    So sorry to hear about your mum dying recently. My mum died on the Queens Jubilee (just 60). Obviously I can't comment on if your mum was OK or not as I wasn't there however since you say that...
  15. Thread: riser/recliner

    by luce
    Replies
    11
    Views
    8,805

    Hiya our experience is it is important to get...

    Hiya
    our experience is it is important to get the right chair, not any one...

    my mum found the following:
    being measured for the chair helps to get the right length from hip to floor. this is...
  16. Replies
    8
    Views
    4,394

    Hi Smudge A nightmare experience, why not...

    Hi Smudge

    A nightmare experience, why not chase with the CHC comissioner and say you are concerned that you have not heard anything regarding the concerns you raised. You could also contact the...
  17. Replies
    5
    Views
    2,951

    Hi Tough times... I know there are other...

    Hi
    Tough times...

    I know there are other single parents with MND. It could be worth talking to MNDA about how/ when/ if it may be helpful to arrange for an assessment so that social services can...
  18. Thread: drink thickners

    by luce
    Replies
    38
    Views
    26,917

    Hi my mum had nutricia nutilis as her thickner...

    Hi
    my mum had nutricia nutilis as her thickner
    as well as having freshly juiced fruit juices as they were naturally a thicker consistency

    such as papaya and orange

    pineapple and apple
    ...
  19. Thread: My Dad as MND

    by luce
    Replies
    9
    Views
    4,746

    Hi Helen Interestingly, my mum could not manage...

    Hi Helen
    Interestingly, my mum could not manage the ipad owing to the finger movements but she could use a lightwriter even up to the day she died. could your dad manage with a light writer? my mum...
  20. Thread: Nebulisers

    by luce
    Replies
    8
    Views
    5,945

    Hiya yes, there are exercises that a respitory...

    Hiya
    yes, there are exercises that a respitory nurse can show you that can help to get the phelm up, sorry i cant remember the name of it either. Speech therapist can also be helpful
    best wishes...
  21. Replies
    11
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    7,784

    HIya see if you can get dual control if possible...

    HIya
    see if you can get dual control if possible
    my mum found a golf ball on the control allowed her to move the wheelchair
    best wishes
    luce
  22. Thinking of you Sammie. so sorry about your news....

    Thinking of you Sammie. so sorry about your news.
    It is strange, my mum died 18 months ago but i still think regularly about the lovely people that helped her remain independent and came with us on...
  23. Replies
    5
    Views
    3,101

    Hi mum had one. it is important to get the...

    Hi
    mum had one. it is important to get the measurements right in terms as it will affect positioning, coffort, ease of movement. OTs should be able to provide- hope you have a good area that can...
  24. Thread: Introduction

    by luce
    Replies
    7
    Views
    3,473

    Richard, sorry to hear your news. I am sure you...

    Richard,
    sorry to hear your news. I am sure you will find great support and advice on this forum, take care
    lucy
  25. Replies
    8
    Views
    6,092

    Hiya perhaps a walker may be helpful, positioned...

    Hiya
    perhaps a walker may be helpful, positioned near the loo so it can be used to help the transfer from the wheelchair to the loo. think the best thing is to explore with an OT. It really depends...
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