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SJ13
25th January 2013, 11:38
Since Dad was diagnosed 9 long days ago, his condition seems to be deteriorating so very quickly. He only started with his symptoms of MND last October (we thought he'd had a stroke with the slurred speech) but in last week or so he is getting weaker and his speech is worsening. Dad sounds very flat and is extremely tired and my mum says his legs are alot weaker in the last two days. I don't know what to expect with Dad (we are due to see a neurologist soon it can't come soon enough)
I live 100 miles away and am ringing every day and keeping in touch via text. I'm trying to get Dad into the habit of taking his mobile everywhere with him so send him a snippet of something interesting each day at different times of the day so making him check it. I am visiting at least every two weeks to see Dad and support Mum. I have a family of my own and unfortunately have Lupus so my health is very unpredictable. I feel really angry and if anyone says they are feeling poorly I just think well you haven't got MND and you'll get better which is not my nature at all. I feel so mixed up. Sorry if this is a little mixed up my thougths are all over the place at the moment and I am on a different level half the time as I don't seem to be able to focus on anything properly. I know I need to be strong and I will be and I will make sure that Dad and Mum have all the support, help and love that they need but I'm struggling right now. :(

Rainbow12
25th January 2013, 12:15
Hi SJ13

I know it may sound impossible but try not to be so hard on yourself. Dealing with finding out your dad has MND is incredibly tough. My mum was diagnosed in March last year and i still struggle at times to cope with what it all means. For me those first few weeks were a bit of a blur. I found it all consuming. The balance between trying to help your parents cope and also trying to cope yourself is not an easy one - all you can do is your best. The fact they know you care is a massive support in itself.

xx

Andrew
25th January 2013, 15:00
Hi SJ13,

It is understandable to feel that way and I am very sorry to hear about your Dad.

If you feel at all able, please contact our team at Connect. Just like the people on this forum, they will be able to offer you support and guidance.

You can ring them on 08457 626262 or you can email them at mndconnect@mndassociation.org. They are available to speak to Monday to Friday, from 9.00am to 5.00pm and 7.00pm to 10.30pm.

I hope this helps,

Best wishes,

Andrew

Chrissy
25th January 2013, 15:09
Hi SJ13

Really feel for you, I don't have any answers just thought I'd say, you are definately not alone in your frustration, I think that we have all (sufferers and carers alike) felt like this at some time, there are days when I still do and it does help to post on here and wait for the sometimes humourous replys.. cue..Pete, Rory Roy etc...I don't do humour at the moment but maybe will again one day.
Keep your chin up
Chrissy

john
25th January 2013, 15:34
Hi SJ,
Just adding weight to what has been said above. It is terribly difficult to be upbeat with this illnesss as Chrissy says. Keep in touch and try and smile whenever your there and treat your Dad the same as you always did(except when you were a teenager).
Best wishes with it all.

john

SJ13
25th January 2013, 17:29
Thanks Andrew, I don't think i can hold a conversation at the moment. I'm crying typing this. Bad day ... but I will ring as soon as I get onto a more even keel.

SJ13
25th January 2013, 17:31
John, You made me smile through my tears ... And brought back some great memories. Thanks

Rory
25th January 2013, 23:17
Hi
These must be testing times for you and your family. Has Dad enough medical help and care at the moment. It may take a lot of pressure off you and mum if you know there is professional help at hand.
My wife goes to work two days a week and we have organised a carer for me - it gives my wife time with her job, time with her friends in the evenings , if she desires, and takes her mind off worrying about me !
There is a difficult balance of looking after yourself and your own family and at the same time caring for dad.
My situation is nil by mouth, virtually nil by legs, virtually nil by grip - I am just waiting for the missus to be nil by credit card !
Best wishes ,stay positive - your dad and mum and also your family are lucky to have such a caring person at hand.

Rory

mrs m
28th January 2013, 21:14
I havent really got anything constructive to say except that i agree with the other posts on here. Its got to be really difficult for you to cope with, as your dads mnd seems to have progressed really quickly and you probably havent had time to even start to come to terms with it. You sound like a fantastic, caring and compassionate daughter, so dont be so hard on yourself!!
take care,
will be thinking of you
mrs m

p.s. i dont actually agree with all the posts i.e. Rory's comment of 'nil by credit card'. Mr m knows that if i am out without him, i MUST obey the master (card)..... :)

roy
28th January 2013, 21:20
Mrs M.

Nice One :-)

Roy.

Rory
28th January 2013, 22:25
Mrs M
I should give you cash back for that one ! If my wife lost her credit cards we wouldn't report it - the person who finds it won't spend so much .
Hope everyone has enjoyed some light relief today from some of the other humorous posts.

We all deserve a laugh and smile, whilst not forgetting the cruel nature of the illness that is part of all our lives .
There is so much love and care for others and inspiration on this forum - truly great !

Rory

caz
28th January 2013, 22:37
hi rory .agree with you there my origonal post on nasty jason ended up with me having a much needed laugh.rob says i am a troublemaker but isnt it brilliant to push the boundaries and just enjoy ourselves . I think we all had fun with it today .wont see me and jeannie tomorrow no doubt we will be on the naughty step ALL day sent there by Andrew lol !ove caroline xx

caz
28th January 2013, 22:55
you have come to the right place.my hubby was diagnosed only last march. aged 49 .the shock is absolutely overwhelming for the first few weeks.you will be up and down every day but if you want to let off steam ask for help about anything.everyone on here is at different stages but believe me you will have instant friendship and compassion .this forum is my lifeline.after you have posted 5 times you can send private messages as well.as rob gets worse i know there is always a shoulder to cry on and someone to lift me up.with much love caroline xx

Rory
28th January 2013, 23:42
Caroline
I don't think Andrew would dare put you and Jeannie on same step - more mayhem !
I think they will split me and Roy also - just as well with his wind !

Rory
X

Andrew
29th January 2013, 09:01
Caroline
I don't think Andrew would dare put you and Jeannie on same step - more mayhem !
I think they will split me and Roy also - just as well with his wind !

Rory
X

Maybe that's the perfect punishment Rory! :D

caz
29th January 2013, 09:29
hey we could start a new club==the naughty step club with andrew as the headmaster!!lol.thats four of us already ha ha x caroline

mrs m
29th January 2013, 21:16
Mrs M
I should give you cash back for that one ! If my wife lost her credit cards we wouldn't report it - the person who finds it won't spend so much .
Hope everyone has enjoyed some light relief today from some of the other humorous posts.

We all deserve a laugh and smile, whilst not forgetting the cruel nature of the illness that is part of all our lives .
There is so much love and care for others and inspiration on this forum - truly great !

Rory

Hear Hear!! Mr m is due to go to day therapy at the hospice tomorrow. While he is gone i must obey the master. Sigh....;)

mrs m
29th January 2013, 21:16
Mrs M.

Nice One :-)

Roy.

Thankyou Sir lol !!

Rory
30th January 2013, 18:51
Give credit where it is due !
The only flexible friend I use is the tube from the suction pump - and that ain't too friendly !

Rory

Joydy
31st January 2013, 12:52
I too can only reiterate what many have said. Although I am smiling most of the day, inside I am so sad. But I do believe that, whenever possible, it is so good to laugh. Humour is so important, in fact I believe it helps to keep us sane. This is why this forum is vitally important because we can easily share our hopes and frustrations with so many wonderful people. We don't feel so alone.

Try to be strong - I know you will find the strength because you show so much love for your family. Just remember, you are doing your very best and your family know this and will be forever grateful to you. We are so thankful that our son and daughter care so much and when they visit they are a breath of fresh air. They instinctively know what to say and we always have a laugh. Equally our grandchildren bring us much joy. They are so natural with us.

Anyway, you take care and just remember, we are all thinking of you. Very best wishes to you and your family.

Susan1960
31st January 2013, 16:40
Hi.

What can I say? I know exactly what you are going through, as I went through the same thing a couple of years ago with my mum. I can only say that for the first few months I felt confused and angry that my mum had this dreadful disease, then all of a sudden I realised that my mum needed me and my dad to be strong for her. It's a very very difficult time for you and your family - especially your dad - but if you try to be strong for him it will make him feel better too.

I know you are all over the place at the moment, but things will come together.

Sue x



Since Dad was diagnosed 9 long days ago, his condition seems to be deteriorating so very quickly. He only started with his symptoms of MND last October (we thought he'd had a stroke with the slurred speech) but in last week or so he is getting weaker and his speech is worsening. Dad sounds very flat and is extremely tired and my mum says his legs are alot weaker in the last two days. I don't know what to expect with Dad (we are due to see a neurologist soon it can't come soon enough)
I live 100 miles away and am ringing every day and keeping in touch via text. I'm trying to get Dad into the habit of taking his mobile everywhere with him so send him a snippet of something interesting each day at different times of the day so making him check it. I am visiting at least every two weeks to see Dad and support Mum. I have a family of my own and unfortunately have Lupus so my health is very unpredictable. I feel really angry and if anyone says they are feeling poorly I just think well you haven't got MND and you'll get better which is not my nature at all. I feel so mixed up. Sorry if this is a little mixed up my thougths are all over the place at the moment and I am on a different level half the time as I don't seem to be able to focus on anything properly. I know I need to be strong and I will be and I will make sure that Dad and Mum have all the support, help and love that they need but I'm struggling right now. :(

poz
2nd February 2013, 21:45
my hugs and thoughts are coming your way SJ13 x

tracy.hunt
27th February 2013, 10:57
Hi. Please dont be hard on yourself. I couldnt belive how quick my mum was deteriorating, even with out all the tests being done and no full diagnoses. done so much research yet wasnt prepared for how quick the syptoms took over. We wanted mum at home, had the front room fitted with special bed, hoist etc, in the end I couldnt sit back knowing dad was there 24hrs aday. I changed my job so I could care for mum in the day, I dont know how I done it as I suffer with ME, I just went intio auto pilot (im paying for it now). Id phone when I wasnt there but mum was unable to talk on the phone. Just your dad knowing you are phoning and thinking of him helps. There never seems to be enough people can do but you are doing everything u can and they know that. Being on this site is important as u need support too. Keep strong and dont eat yourself up with guilt, u are a good daughter xx

SophieM
29th March 2013, 18:10
Dear SJ,

you replied so kindly to my introduction post. I am so sorry to read this thread - this is so extremely difficult, especially with you being so unwell yourself. I so understand about your thoughts being all over the place. I think you are doing incredibly well with everything. My dad is also far away - I actually need to take an aeroplane! I am trying to see him as much as possible, try and ring etc...It is really hard for me to be so far away from him.
I just wanted to let you know that I am thinking of you.

Lots of best wishes,
Sophie xxx

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