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Thread: Mum has just been diagnosed

  1. #1

    Mum has just been diagnosed

    Hi there - wow what a great forum this is! So, this is my story so far.

    My wonderful 83 year old Mum was diagnosed on Thursday, she lives in Spain with my Stepfather. After many discussions I managed to persuade her to see a private Neurologist as we were not getting anywhere with the Spanish health system. Previously through the system she had an MRI and CT Scan and the results were negative and they told her that she had cervical disc herniation in her neck and needed physio. Her speech was getting worse and she could no longer feed herself so we arranged for her to see a Neurologist who apparently diagnosed her straightaway with just looking at how she was walking. He told her ALS and that he needs to arrange for her to have an EMG to get the full picture.

    This is all so heartbreaking especially as I am in the UK and they are in Spain. They are due to fly out for Christmas for a week, but I fear that she may not even be able to make it (she is insisting still the she wants to come home for Christmas), she may not even be able to go back, but she may not be able to get support here as she has been out of the NHS system for 13 years now. I have arranged with the Red Cross to get a wheelchair and a commode to leave downstairs as I do not have a downstairs toilet. At the present time she is able to walk assisted down the stairs in the morning and up again at night.

    I think Mum is now in denial - being is Spain is so difficult as their care system is not the same as here, plus there is the language barrier.

    Any guidance/advice is welcome. I have been doing some research and it seems this dreadful disease affects people so differently but the outcome sadly is the same. I just want Mum to be happy but I am struggling not to be too pushy as I think she just wants to carry on as normal, my Stepfather who is younger than her but he is at breaking point.

    Sorry for going on a bit - actually it was good to write everything down!

  2. #2
    Forum Member Ellie's Avatar
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    Hi TT & welcome.

    Sorry to hear of your mum's diagnosis.

    It's harder on you as you can't see how she is physically coping with daily life, so you don't know how she'll cope with the airport walks and flying in 3 wks time. I'd suggest getting airport assistance.

    Do you video chat? That's a good way to keep an eye on how she is.

    IDK if this guide is helpful IF mum decided to stay in the UK: https://www.ageuk.org.uk/globalasset...abroad_fcs.pdf

    Had she symptoms long before her diagnosis? And when is the EMG?

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

  3. #3
    Forum Member Kayleigh's Avatar
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    Hello Twinkle Toes and welcome to the forum,

    I am so sorry to hear that your mum is so unwell. It must be a very worrying time for you and all your family. You have come to the right place for advice and support. There is also the MND Connect helpine if you would like to talk to someone about your mum's situation.

    You sound like a very caring and organised person. You are doing the right thing by researching what would need to be done concerning your mum's healthcare etc, if she were to return permanently to the UK. Regarding her healthcare in the UK, first thing that your mum would need to do is register with a GP and so It might be worth you contacting your GP's surgery to ask what information they would require for her to register.

    It was very helpful of you to let us know that you have borrowed a wheelchair and commode from the Red Cross. This lending service is not something that I knew about and I expect that others reading this post will also find this useful to be aware of.

    Hopefully, your mum will be well enough to visit you at Christmas.

    Best wishes
    Kayleigh x
    Last edited by Kayleigh; 1st December 2018 at 16:22.

  4. #4
    Thanks Ellie - we have already arranged airport assistance and we FaceTime everyday, we have done since she moved.

    We are waiting for he EMG appointment to come through. Looking back I think her symptoms started about a year ago where she was struggling to walk for long and struggle with the lack of muscle strength to walk up the stairs, it was all a struggle then, so it has just got worse and worse. Talking to friends and family over the weekend, they all thought it was MND but didn't want to say anything! I wish they had had then we would have arranged tests so much sooner, we just put it down to old age!

    x

  5. #5
    Thank you Kayleigh. I will make contact with the MND Connect and also the local Social Services. I have been in to doctors and they have given me registration forms, unfortunately she has to be there in person to register, so will complete the forms prior on her behalf as she can no longer has use of her hands.

    I have everything crossed that she is well enough to visit at Christmas, she got really upset when I suggested that I go there for the holidays, I think she wants to be here for her maybe her last Christmas, so I need to make it extra special for her.

    x

  6. #6
    Forum Member Barry52's Avatar
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    Hi TT,

    Sorry to hear about your mum and it is difficult enough for family to cope with the diagnosis without having the problem of mum living in a different country. The care service in this country is excellent for managing symptoms, especially if you have access to one of the 22 specialist MND centres in England. Maybe you can broach the subject of them moving back to the UK during their stay with you.

    I trust you will all have a wonderful time over Christmas and hope there will be more occasions to share family events.

    Barry
    Iím going to do this even if it kills me!

  7. #7
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Twinkle Toes View Post

    ... Talking to friends and family over the weekend, they all thought it was MND but didn't want to say anything! I wish they had had then we would have arranged tests so much sooner, we just put it down to old age!
    Sometimes TT, ignorance is bliss and I think this was one of those times...

    You and your mum would have had an extra year of worry and anguish and, without meaning to be blunt, that year makes no difference to your mum's overall prognosis - on the upside, it gave you both a less anxious year and a "normal" mother-daughter relationship, which is good.

    I hope you can all get together and have a lovely, memorable Christmas.

    If you notice or hear of any specific symptoms causing her distress, please let us know and we'll try to help in any way we can.

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

  8. #8
    Thanks Ellie. I’m now in Spain for a few days to discuss the options of Mum coming back to the UK, hopefully she will be able to come back with me before she is too unfit to fly. I want to get her into the system and registered at the doctors etc. There is a disability shop close to me and they rent stairlifts so that will be extremely handy.

    She is complaining that her leg keeps going into spasm and in some discomfort, she said it’s not like the sciatica pain she gets but similar. Is there anything I can do to help?

  9. #9
    Forum Member Terry's Avatar
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    Hi Twinkle Toes;

    Hope you have some time out and some sunshine.

    Are the spasms at any time or just at night in bed?

    There are anti spam drugs such as Baclofen, these can work well in some cases. The risk is that you can take too much and the muscles are too relaxed and won't support much. it is probably worth trying but do bear in mind that it can take a couple of weeks to get to a equilibrium.

    I take 4 X 10mg per day but you can take 10 a day. Best that she asks her doctor about them.

    Love Terry

  10. #10
    Forum Member Ellie's Avatar
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    Oh I'm glad you went to Spain - it must be so hard dealing with this from afar.

    Spasms are all too common unfortunately. As Terry said, Baclofen is a commonly prescribed antispasmodic medication - if she were to take it, given her age and likely relatively low muscle mass, I'd start low, 5mg, to see how that affects her muscle tone.

    However, given the spasm is localised, you can try massaging the area with magnesium oil and keeping her warm. An electric blanket in bed (not too hot) can help and is lovely (even in Spanish winters!)

    If mum is on blood thinners (e.g. Warfarin) she'll really feel the cold and, if she is taking any meds, she should check with Pharmacist or GP for interactions before starting any treatments.

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

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