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General health

Motor Neurone Disease - help!

15 replies

mummydreamer · 10/03/2005 11:41

My father has recently been diagnosed with MND and whilst he's coping reasonably well, I'm still reeling from the diagnosis.

I feel it would be useful to talk to other people who have had some experience of what to me feels like a very frightening disease.

Can anyone help?

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zippy539 · 10/03/2005 11:49

Sorry to hear about your Dad, mummydreamer. I can't help but bumping so someone else will see this.

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mummydreamer · 10/03/2005 11:51

Thank you zippy.

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bundle · 10/03/2005 11:51

mummydreamer, i'm really sorry to hear about your dad, the MND website has some local branches where you might be able to get in touch with other families. here

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mummydreamer · 10/03/2005 12:01

Thanks bundle. I have been in contact with the association and they have been great. I just wondered if anyone else is / has been where I am now...

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bundle · 10/03/2005 12:01

i don't have any experience, but what stage is he at?

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mummydreamer · 10/03/2005 12:07

He has very limited muscle control in his arms and hands which makes getting dressed and basic tasks difficult. He is also starting to struggle to swallow and finds certain foods tricky to eat- this being related to weakening chest muscles. This is what really frightens me.

On a positive note, he's quite an inventor and has devised a gadget to help with lifting / dressing etc. He's a brick - it's just me who is struggling to deal with the issues really. Complicated by the fact I'm 37 weeks pregnant and live 3 hours away!!!

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bundle · 10/03/2005 12:15

oh you poor thing, is your mum his main carer? you're right, the swallowing thing is v scary for everyone

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mummydreamer · 10/03/2005 23:57

My parents are divorced and Dad lives on his own. I do have sisters though who help me care for Dad. We have also been put in touch with the local hospice, who I think will be helpful when the time is right.

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mummydreamer · 12/03/2005 13:32

bump

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winnie · 13/03/2005 17:39

Rather than ask how it is all going with you on the other thread, I thought I'd come to yours. So, how are you? And how are you dealing with everything? I hope someone here will be able to give you some advice re mnd. I sympathise with the swallowing thing as Mum is finding it very difficult and painful to swallow and I think we are getting to the point where she is going to have to have food liquidised
As I said on the other thread; I am thinking of you xx

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mummydreamer · 13/03/2005 23:09

Hello Winnie,

I really didn't want to hijack your thread, just wanted you to know that there was someone out there who could relate to what was happening to you and was thinking positive thoughts for you!

Whilst I have the odd day where I feel very low about the whole Dad situation, there are many others where I feel glad he is still at the end of the phone and relatively independent.I am able to focus a bit more on "living for today" I suppose, although I suspect there may be an element of denial in there too.

I think that being heavily pregnant (37 weeks+) has intensified this feeling of powerlessness for me. Sometimes, I think the whole situation is so surreal and that I will just wake up and it'll be a mistake... I am also currently unable to see him as I have a chest infection and daren't risk passing it on to him.... Life conspiring against me I think!!!!

On a more positive note, we have made a list of all the things he would like to do and with my sisters, we're trying to arrange these things. I have also found the MND Association to be really helpful and supportive. (We have been given contact details for the local hospice but it all feels too new to contemplate that route yet.)

Anyway, enough for a Sunday Evening. I send warm thoughts to you and send you strength to tackle the bureacracy of arranging support services. Hope that you make headway with the Macmillan Service - I have heard great things about it.

Take Care.

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winnie · 15/03/2005 17:03

Mummydreamer, how are you?

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mummydreamer · 21/03/2005 22:45

Had a bit of a crap week with phonecalls from my dad's ex-partner stating that he's not coping and refusing all services. Dad insists he's ok but it is now taking him until midday to get dressed and he's struggling to prepare a meal etc. Situation looking grim but I can't really do anything until after baby arrives - due now in just over a week. Am having to organise a family conference at the weekend to put some sort of plan in place to get us through the next few weeks. On an emotional level am feeling quite strong all things considered - must be all those pregnancy hormones kicking in.....

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winnie · 23/03/2005 16:10

Mummydreamer, I am sorry that you've had a crap week. I hope the family meeting goes ok I think it is important. Your dad sounds as if he is trying not to be a burden (sorry hate that word but I hope you know what I mean). I am glad that you are finding the strength to deal with everything. Are you finding yourself more accepting of the diagnosis yet?
Thinking of you and your, soon to be, new arrival
Best wishes, winniex