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Thread: New to the site

  1. #1
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    New to the site

    Hello to everyone, Im Nessie and my 84 year old mother has just been diagnosed with ALS motor Neurone. Its described as rapid, and in the last few weeks i've watched her speech deteriorate along with her ability to swallow or eat. She is also losing her strength and is now weak.

    To add to my problems she has lived in Spain for the last 25 years. She was and still is a very proud and independent woman although i know that time is running out as the disease take hold of her.

    I guess my first few questions are has anyone got any experiences they can share that are similar to my situation. Any advise about care in spain maybe what support is potentially available there. Or should i look to get her back to the UK and again what support or how to get support in the UK is available

    your help is appreciated

    Nessie.

  2. #2
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    Welcome to the forum Nessie

    Steve

  3. #3
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    Hello everyone

    I'm urging anyone that may take a look at the forum from time to time - but hasn't decided to join yet to consider joining.

    You would not only be able to post onto the notice boards but also receive advice and messages - you may well have a piece of advice orsnippet of information that another member may find invaluable.

    With respect and Kind Regards
    Steve Dolby

  4. #4
    Forum Member john's Avatar
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    Hi Nessie.
    I have no personal experience to offer but it seems like it depends where your Mum is. There are thoughts for and against on this thread
    Returning to the UK. if you are going to have to take on the role of carer then it may be essential that you go to live in Spain if you can or otherwise you will have to seriously consider your Mum returning to the UK.
    The 2 people posting on the above thread Michaelw and buzzer B may be worth sending pms to for their opinions. It may be that you will have to make 5 posts on the forum before you have access to profiles so that you can send pms.

    regards and good luck.

    John

  5. #5
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    Hi Nessie,
    Welcome to the forum, very sorry you have to be here.
    It's a very small world! Last Friday I went to see my Neurologist at Denia hospital and whilst talking to my interpreter ( I only speak social Spanish) she told me that after meeting me in July she now had another recently diagnosed patient to look after, a lovely English lady in her 80s!! I can only assume this is your mother.
    With regard to care......... unlike the UK, after diagnosis there is no Multi Dis team to prepare you for the future or use as a point of contact. Palliative care is available but is on request, from what I am told equipment can be obtained but again has to be requested.
    Private nursing care organisations operate in the Costa Blanca, one I have found is Premier Nurses.
    My situation is different to to your mum as my deterioration has not been so rapid, four months on from diagnosis I am still free of speech, swallowing and breathing problems. So apart from weak legs and hands I still have a fairly normal life. As a consequence we have decided to remain in Spain as the quality of life is so much better than the UK. We have a great circle of friends and a fantastic social life.
    I am sure that after 25 years in Spain your mum will also have very many friends who she would like to remain with, returning to the UK would rob her of that social network and might have a negative affect.
    Feel free to pm me for my 0845 (local rate) UK number if you would like to have a chat.

    Take care

    Keith.

  6. #6
    Forum Member Terry's Avatar
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    Good morning Keith and Nessie;
    Fantastic to see the site working so well, even in helping in other countries. I thought similar to Keith, mum might like to stay with her friends etc. I guess that she will make her own mind up on where she wants to be. If mum is coming home it’s best that she does it sooner rather than later.
    Great that you have a friend there, Love Terry

  7. #7
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    Quote Originally Posted by BuzzerB View Post
    Hi Nessie,
    Welcome to the forum, very sorry you have to be here.
    It's a very small world! Last Friday I went to see my Neurologist at Denia hospital and whilst talking to my interpreter ( I only speak social Spanish) she told me that after meeting me in July she now had another recently diagnosed patient to look after, a lovely English lady in her 80s!! I can only assume this is your mother.
    With regard to care......... unlike the UK, after diagnosis there is no Multi Dis team to prepare you for the future or use as a point of contact. Palliative care is available but is on request, from what I am told equipment can be obtained but again has to be requested.
    Private nursing care organisations operate in the Costa Blanca, one I have found is Premier Nurses.
    My situation is different to to your mum as my deterioration has not been so rapid, four months on from diagnosis I am still free of speech, swallowing and breathing problems. So apart from weak legs and hands I still have a fairly normal life. As a consequence we have decided to remain in Spain as the quality of life is so much better than the UK. We have a great circle of friends and a fantastic social life.
    I am sure that after 25 years in Spain your mum will also have very many friends who she would like to remain with, returning to the UK would rob her of that social network and might have a negative affect.
    Feel free to pm me for my 0845 (local rate) UK number if you would like to have a chat.

    Take care

    Keith.
    hi keith and thankyou for your thoughts

    yes it is indeed in Denia hospital .....as i understand it the interpreters name is candy?

    if its ok ill give you a shout in a couple of days time due to my work commitments...i look forward to our chat.

  8. #8
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    it doesnt appear that i can pm yet so could you pm it to me please?

  9. #9
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    i hope its to do with making five posts

  10. #10
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    mum does live on the costa blanca too in javea....

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