My mum

day1 · 10-01-2009, 01:54 PM

My mum has just been diagnosed with MND, she has had slurred speech for the past 18months but nothing wrong with her muscles at all, and is mobile and active.
I'm in shock i know very little about it, and she was informed via a letter so didnt even have a doctor to ask!
I dont know what to do or think but am very sad, sad for her, sad for all of us. My children adore her and knowing that their time is limited with their wonderful grandmother is perhaps the hardest thing i am facing.

Al · 10-01-2009, 04:54 PM

Hello day1. Sorry about your mum. If she has just slurred speech after 18 months then I would guess that she ihas a slow progression. She may be with you for far many more years than you are thinking now. MND's are strange and not everyone is the same. She could be one of the lucky ones. Don't lose hope.

AL.

flyingaseagles · 10-01-2009, 09:24 PM

That is good if you have ALS to only have a burred speech after 18 months. There is alot of people that has been Diagnosed with ALS that live a long time. Your mum sounds like she maybe one of them. I understand your pain, my mother had ALS and I lost her in 2004. I still hurt so bad. It has took me a long time to even get to the point to talk about it without crying. But now I feel like I am going to do something to help ALS patients hopefully I can. If you need someone to talk to just send me a message I will try to help anyway I can.

Debra

day1 · 10-02-2009, 01:04 AM

Thanks for the messages, i'm praying that she will be able to live with it for a long time now, i love her so much, its all such a shock. She goes to the doctor on Monday to find out some more, so we may have a clearer idea of what is going on.
She also has a difficulty swallowing, and my dad says her strength isnt what it used to be i.e. she struggles with jar lids if they are on too tight but that might just be because she's in her 60s? He said she still lugs the vacuum cleaner up the stairs when he's not around!

Five · 10-02-2009, 03:06 AM

Hi day1

My 69yr old mum was diagnosed with mnd last month. I too have kids that adore her and we were expecting to have her around for a very long time. I really feel for what you are going through. There is lots of information on this forum and people willing to assist you with your questions - or just lend an ear. My mum is also having trouble swallowing. For her, this all started in June and seems to be progressing quickly.

All the best to you.

day1 · 10-02-2009, 03:47 AM

I'm sorry to hear you are faced with this also. Just so hard to come to terms with, my mum is such a vibrant go-getter type, loves running round with the children and playing with them....

Five · 10-02-2009, 04:15 AM

We are finding it helpful to try and stay a step ahead of things for my mum. Without speech it can be quite isolating (my mum is living on her own as we lost my dad to pancreatic cancer last year). We have installed a phone that she can type into rather than speak to maintain her independence. Also, we have got her set up on MSN, so my kids now "chat" on line to her nearly every night.... it's taken a bit to get her to take up the technology, but it is keeping her and us in touch. Don't know how old your kids are, but if they can text your mum or email her, or chat on-line, it can help with that connection. Keep in touch with the outcome of her Dr's appointment.

day1 · 10-02-2009, 04:30 AM

Hi Thanks for the info, we live about 2hrs away at the moment from her and they've had their house on the market because they wanted to move closer to us to help with the children (aged 4 and 20mnths), and are still wanting to do that. They are on skype at the moment but as it progresses we will have to look in to alternatives. Just cannot believe its happening to us. My brother is going to the specialist on Monday with her, which i am glad about as he is very assertive and will get some answers, i have invited my parents down next week when my husband goes away with work to help me with some painting, i'm trying to carry on treating her as 'normal' and she loves to help me with the children and the house, painting, making curtains that type of thing. Its only when something like this happens that i realised how much i take my mum for granted, that she has always been there for me......i feel so sad yet she's still here isnt she?

Five · 10-02-2009, 04:46 AM

She sure is... and at the moment I am trying to just go a day at a time. Every morning mum wakes up and can see her friends, go out to restaurants, spend time with the people she loves is a good day and that's what we have to enjoy now. I must admit, knowing that she may not be able to eat well in the future, we have been booking every restaurant she has ever dreamed of eating at! A bit of advice I picked up from these forums was to let my reaction to this be led by how she reacts... so if she wants to just "get on with things" I just go along with her. We too live 3hrs from my mum. We are moving up to live near her in December. My kids are 9yrs and 12 yrs. Its great to have your brother going to the specialist with her... often its hard for just one person to remember everything that is said and to remember to ask all the questions!

day1 · 10-02-2009, 05:13 AM

Thanks for that, my mum seems to be quite upbeat at the moment, its me thats a mess! I've just rewatched a TV documentary we made last July and her speech has definately got worse since that time, although she is still coherent. Its just the big unknown isnt it? What happens next, what will happen, when will it happen.....to many questions and no answers. I'm glad you are enjoying time with your mum, i'll have to snap out of this and get on with it myself

tdamess · 10-02-2009, 07:51 AM

just want to wish you and mom the best, it is very sad my mom had a stroke that took her speech and she knew it inside,it was a major stroke and could not care for her self at all but, she was able to eat but, never got out of bed for 7 yrs
so , i understand how you feel.

dldred · 10-02-2009, 08:30 AM

Hi day1,

I couldn't get over how much your mom and my mom are alike. My mom was diagnosed early this year and it was devestating at the time. When I look at it now it doesn't seem so bad. My mothers speech is also slurred and that seems to be the only thing that is getting worse. She does have to use a walker sometimes but is still very strong. The only place she has any atrophy is in her hands. When you were talking about your mom taking the vacuum cleaner up the stairs it reminded of my mom. I called the other day to see how she was doing and she said well I just got done moving some furniture around. I said OOOOkay, I was totally amazed. I think we have to treat them like we always have, if they are strong enough to handle this then we should be also. It takes some time to adjust to this and every day it gets easier. Please don't ever lose hope and know that I am here to help you if I can. Tell your mom to keep up with her great attitude, that helps so much. Thinking of you and give your mom a hug from me.

Dana

day1 · 10-02-2009, 09:17 AM

Wow, thanks for that, your mom sounds like a trooper!!! It will take time for me to adjust my grandmother on my mums side lived to 91 and i just imagined we'd all trot along the same path for some reason. Hearing others experiences are a real comfort, so thank you for sharing and for the support.