Page 1 of 4 123 ... LastLast
Results 1 to 10 of 31

Thread: New to MND

  1. #1
    Forum Member Chrissy's Avatar
    Join Date
    Nov 2012
    Location
    Cornwall
    Posts
    268

    New to MND

    Hi, My husband has just been diagnosed with MND, he doesn't seem to want help at the moment, struggling with the idea that it won't get better. I thought looking at what other carers had to say might help me

  2. #2
    Forum Member Joybells's Avatar
    Join Date
    Oct 2012
    Location
    PORT TALBOT
    Posts
    74
    It feels although the world has toppled when the diagnoses is made. I was diagnosed last year and my husband, who is my carer, could not come to terms with the idea even though I accepted the diagnoses. It does not get better but gradually you do accept the idea, it helps if you take each day as it comes and also talk to each other about your fears and don't be afraid to ask for help. Our local hospice has been so helpful with supplying wheelchairs, commodes, and this week I got a hospital bed. Be strong for each other at this traumatic time. xx

  3. #3
    Forum Member
    Join Date
    Jan 2011
    Posts
    283
    Hi Chrissy and welcome to the forum,

    I'm sorry to hear of your husband's diagnosis but you're in the right place to find advice and support for you both. It's not unusual for a newly diagnosed person to go into a period of denial, it is, after all, devastating news for anyone to be given, but look around you here for positivity in abundance.

    You'll find much practical advice and knowledge sharing among the community here, so if you have a question or are seeking advice, ask away, there's bound to be someone who has been through a similar experience.

    And if you feel you need someone to talk to, please get in touch with MND Connect, they are the Association's support team for patients, carers, family members and medical professionals alike. You can call them on 08457 626262 or email mndconnect@mndassociation.org. Their full details and times of availability are to be found by clicking the MND Connect tab at the top of this page.

    Best wishes,

    Mike.

  4. #4
    Forum Member
    Join Date
    Dec 2010
    Location
    Luton
    Posts
    238
    Thank you so much Chrissy for joining the forum. Sure that you will find a lot of interesting information from other members.

    Kind Regards
    Steve

  5. #5
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    Location
    South Staffs
    Posts
    2,295
    Hi Chrissy,

    Adding my welcome along withe the others, It's early days and it takes a long time to come to terms with it all, but we do in time, the one golden rule is don't put off doing things , you want to do , like going to the dentist, and try to stay positive , much said on here ,but you will find its the only way to go forwards,taking one day at a time ,and never give up hope.

    Regards
    Pete
    All I need is a miracle

  6. #6
    Forum Member Chrissy's Avatar
    Join Date
    Nov 2012
    Location
    Cornwall
    Posts
    268
    Hi All

    Thank you for your kind word, I will keep logging on, you're all so positive. As I said before it is very early days but in time he will have to come to terms with it. Just took him shopping this morning and he was really surprised that it exhausted him (he is still on his feet, just).
    Lots more to say and ask people but I won't bombard you with it all at once.

    Again, thank you all for being there, it means a lot to know we are not alone.

    Chrissy

  7. #7
    Forum Member Chrissy's Avatar
    Join Date
    Nov 2012
    Location
    Cornwall
    Posts
    268
    Hello again

    We have had our worst day today. Both my hubby's legs collapsed on the stairs (one leg useless already) luckily the O.T was here fitting a bath seat so she was able to support him and get him up, he was just hanging from the stair rails trying to shout (we were in the bathroom already. Okay, bad enough but he was also having an horrendous nose bleed, he gets lots lately, just wondered if any of you know if this is 'a thing' with MND or just hubby's bad luck. It's frustrating really not knowing, we don't even know what type he has although I suspect ALS (is that the one where everything is deteriorating at the same rate?)
    Would be grateful if anyone knows as I am unsure if he needs to see GP about this.
    Thanks
    Chrissy

  8. #8
    Forum Member pete's Avatar
    Join Date
    Oct 2011
    Location
    South Staffs
    Posts
    2,295
    Evening Chrissy,

    Nose bleeds are not something i have heard being mentioned with MND in any form, but having said that , everything else gets atributed to it ,so ,If i where you i would ask his GP thats one thing they may be able to help him with, And i think you may well be correct, it being ALS ,as with bulbar its as you know mainly the facial muscles and swallowing/speech problems you get first up and then gradually get the rest for good measure , Lucky for you both that you had the help of the OT saved you injuring yourself , stairs are not the best place to try to help someone as we have found out ourselves recently, you take care and wish you a better tomorrow.

    Regards
    pete
    All I need is a miracle

  9. #9
    Forum Member Terry's Avatar
    Join Date
    May 2012
    Location
    UK
    Posts
    7,813
    Hi Crissy;
    Sorry to hear about both of his legs giving away. I do get a nose bleed now and again but it’s self inflicted. I think that blocked noses are fairly common and quite hard to clear.
    Hope his pins feel a little stronger, Love Terry

  10. #10
    Forum Member Chrissy's Avatar
    Join Date
    Nov 2012
    Location
    Cornwall
    Posts
    268
    Thanks again Pete and Terry.
    Feeling a lot better now, we just showered him on his new bath seat, he says it's the best feeling to get thoroughly clean (don't we take things for granted) He is just being extra careful at the moment, think the time has come for a stair lift but he was desperate to keep doing the stairs. It may be misguided but he thinks as long as he can keep upright and mobile that he can ward off rapid deterioration, I kind of think it will come at it's own rate anyway but don't want to kill off any 'fight' he still has. Let me know if you think I should be more real with him, I'm not giving him false hope but also not doing the hard sell as he is still shell shocked, although our Neurologist thinks this started at least 10 months ago, we only had confirmation a week ago.

    Thanks again
    Chrissy

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •