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Kate
30th March 2012, 22:04
Hi everyone my name is Kate and on wednesday 28/03/12 my lovely mum was diagnosed with ALS. She is 78 years old and for the past year has noticed some changes noticably in her speech and losing the use of her left hand, eventually after undergoing tests we were given the news we were dreading.
We are devasted and have gone through every emotion known to man as all of you also must have done on diagnosis. I have joined this forum as right now I need you all to help drag me through this initial period as I am really scared. Now I know that may sound really selfish as after all its my mum who has this but if I am not strong then I wont be any use supporting her both mentally and physically. We are now waiting for the specialist and multidisciplinary team to contact us. Many thanks for reading this, I look forward to conversing with you and joining in the supportive network
Kate

magic
30th March 2012, 22:44
Hi Kate, sorry you have had to join us but welcome to the forum. Like you I am the carer and was overwhelmed by my husband's diagnosis last December. I have found this forum invaluable. I have accepted the help of friends and just started cognitive behaviour therapy to give me some strategies to cope with the challenges ahead. I am also on anti depressants. You can see I am using all the help that I can get. I hope that you find the support you need. You have started in the right place.
Magic

elle
30th March 2012, 22:44
Hi Kate,
so sorry to hear about your mum i too have ALSso fully understand what your all going through at this difficult time, easier said than done but try to stay positive and your mum will pick up on your strength, it is a scary situation but with the right support like mnd connect or through other members on here, through our own experiences we will try to help you through it, please feel free to ask anything you wish to know i and others will try to help you.

Take care x Elle x:)

pete
30th March 2012, 22:51
Hi Kate,

Sorry to have to welcome you to this forum, but if its help and advice ,there are many on here who will help you with anything you need to know, This may sound harsh ,but dont read everything about MND , it is certainly going to make your life change in some ways but dont read to much into it , Your Mom is unique as we all are and just because someone has problems ,it isnt sure that your mom will be affected in the same way ,and you need to stay positive ,its hard at the moment but it really does work for you all ,you need to face everyday as it comes and do not fall into the doom and despair that only makes life worse for you and your mom,Wishing you all the best ,hang in there ,and ask away

regards

pete

pete
30th March 2012, 22:52
Hi Kate,
so sorry to hear about your mum i too have ALSso fully understand what your all going through at this difficult time, easier said than done but try to stay positive and your mum will pick up on your strength, it is a scary situation but with the right support like mnd connect or through other members on here, through our own experiences we will try to help you through it, please feel free to ask anything you wish to know i and others will try to help you.

Take care x Elle x:)

Hi Elle

good to hear from you ,hope your ok ?.

pete xx

Kate
31st March 2012, 09:33
Hi All
Thank you so much for your replies, I know I have done the right thing joining the forum.
Kate xxx

ColinF
31st March 2012, 11:08
From my experience being open and talking with your mum about things will help both of you enormously. The diagnosis is a shock and it's easy to withdraw in on yourself but right now both of you need to do the exact opposite. Don't wait six months to realise that life didn't end with the diagnosis!

I've found having little things to look forward to helps quite a bit. The time-frame is obviously important but make sure she always has something to look forward to in the next week or so. It sounds like she's able to get around okay so why not organise a weekly trip to a coffee shop to meet some of her friends, or to go somewhere special (for me would be somewhere in the hills) even if you never get more than 10 m from the car, take a picnic! Does she enjoy the theatre or the cinema? If you call ahead then people will be amazingly helpful (if you haven't already done so call the council and get a blue badge). Equally if you want to stay in then why not get a DVD of her favourite movie and have a film night?

I know from experience that this is a hard time but give your mum a hug and plan something nice for next week.

Kate
31st March 2012, 21:45
Hi again
Spent quite a few hours at my Mum and Dads today. I had a good chat with both of them. Its clear we are all still in shock and my sister is so very angry so having a problem talking about this at the moment but I am sure she will come around at some stage. I said to my Mum basically what you have all said to me. My biggest fear is that when she has her appointment with the specialist she wont be able to handle some of the information she is given but I could very well be wrong and doing her a disservice. Right now I am just on the floor and cant make any sense of it all and my poor Dad is devastated.
So sorry to be a misery again tonight but hopefully over the next few weeks and months I will get stronger and more positive.
Thank you all
Love Kate xxx

michelle
1st April 2012, 01:14
Hi kate unfotuneatly were in the same boat my 75 year old mum was diagnosed in January and like you we were devastated by the news. All I can say is that you will be strong because you have to for your mum and all your family. It really dosent get easier in my opinion you just focus on what you need to do each day then go into your room have have a good cry. I hope you have the support you need to deal with all this as its those close that keep you going. There are some really useful tips and helpful folk on here and it's good to use them as a sounding board.

All my best wishes to your Mum you and your family

Michelle

Kate
1st April 2012, 07:52
Hi michelle
Thank you so much for your reply. I am completely terrified of what may come in the near future but I need to focus on the here & now. I hope your mum is ok at the moment and look forward to keeping in touch with you
Thanks again
Kate xxx

magic
1st April 2012, 15:54
Kate, my husband does not want to know the long term outcome of his MND. I always tell professionals, early on in any appointment, about his wishes and people have respected this. you may want to protect your Mum in this way. Also consider reading 'the selfish pig's guide to caring'.I find it pretty helpful and bought it on Play.com.
Good Luck
Magic

Kate
1st April 2012, 17:39
Hi magic
Thanks for that I think that's a really good idea. I have sent for the book from Amazon so will get stuck into that as soon as possible. I really am grateful for your support, hope you are having a good day.
I've just finished another whinging session, time to get stuck into the ironing!!!
Lots of love
Kate xxx

looby
1st April 2012, 23:34
Hi Kate
Like you I was devastated when my husband was diagnosed with MND bulbar's palsy last summer. My children were also struggling to accept it . But as everyone here has said the best way to cope is to try and make the most of every day. I know this is easy to say but I took this advice from the forum and although I still cry every day at least once -- I try and make each day count. I know I will never accept that this horrible disease is going to take my husband from me eventually, and one of my sons is still angry 9 months after his dad's diagnosis. But I try hard to make my husband have fun and do as much as he can of the things he enjoys. Get all the support you can. Best wishes -- keep plodding on !
Lyn

Kate
2nd April 2012, 08:07
Hi Lyn
Nice to meet you, if there is one thing I am getting on to very quickly it's the taking every day as it comes scenario. I am so proud of mum for how she took the news and has been over the past few days although I know how scared she must feel. I have took on board all the snippets of advice everyone has given, it's very reassuring to know people you have never met before know exactly how you are feeling. I look forward to hearing from you soon Lyn, have a good day (even though it's Monday)
Lots of love
Kate xxx

Robyn Copley-Hirst
2nd April 2012, 10:43
Hi Kate,

I'm very sorry to hear about your Mother's diagnosis. Just a word to say that our Connect phoneline is there to support you as well as your Mother. They can talk through how you're feeling and also help with the practicalities of getting things organised now and in the future. You can email or phone them on 08457 626262 or mndconnect@mndassociation.org

If you need any help whilst on the forum just ask in our help section, or ask myself or one of our moderators.

Best Wishes,

Robyn
(forum co-ordinator)

Kate
3rd April 2012, 07:24
Thank you Robyn I will certainly keep that in mind.
Best wishes
Kate

Kate
3rd April 2012, 23:23
Good evening everyone
My dad told me tonight that our GP wants to speak to my mum then the rest of us separately. I am a bit concerned as mum is still very shocked and distressed and I am worried about what he may say to her, then there is my dad who is completely devastated so I am going to speak to the GP but I don't expect he will tell me what he has in mind to discuss with my mum. Does anyone know on average how long we may wait to see a specialist as I think mum will feel better if she knows she is receiving some sort of treatment.
Thanks Kate xxx

Cath51
4th April 2012, 11:01
Hi Kate
Where has your Mum been referred to for EMG and Nerve Conduction Tests? Mic was initially referred to Wigan for initial diagnosis (although he is from Haydock) and they then referred to Salford Royal for the tests. It may be if your Mum is in the St Helens area that she gets referred to Walton - don't know much about the Specialists at Walton but Dr Hamdalla and the team at Salford are outstanding. Mic was quite quick to get his appointments from GP to Wigan and then Wrightington for MRI scan then onto Salford, not sure if this is the route your Mum will be taking. Make sure you get passed onto the local OT as they can sort out any equipment your Mum & Dad may need to cope and I am sure people on this site will always be willing to pass on advice and contacts to help.

Kate
4th April 2012, 17:57
Hi Cath
Mum has had all her tests and we were given the news last wednesday but now apparently she is being referred to Prof Young at the Walton Centre so that's what we are waiting for, It will be after Easter now but she will be better in her mind if something is going on.
Kate xx

margaretp
5th April 2012, 13:44
HI Kate, sorry to hear about your mum. My perfectly healthy son was diagnosed with this horrible disease on July of 2008, We did not know how we were going to cope. It has only been in the past year that he has lost the power in his arms and uses a wheelchair. All I can say is try not to dwell too much on what has happened as you cannot change the diagnoses and live for every day. We will not give up hoping for some sort of ground braking discovery to halt the progress and maybe someday a cure. Keep your chin up for your mum. Robert is now thirty.

Kate
5th April 2012, 23:00
Hi Margaretp
Thank you for your reply. I guess right now we are just going through the process of getting our heads together. Mum was diagnosed one week yesterday and I don't think a minute has gone by that we are not thinking about it. I have cried constantly, I am trying to concentrate on now but the thought of her suffering is killing me as it must you and your son also. I am scared stiff if the truth be told. Thank you for your support I am so glad I joined this forum as everyone has been so kind.
My best wishes to you and your family particularly your son
Kate xxx

louise
15th April 2012, 11:47
Hi Kate,
My husband was diagnosed 2yrs ago, like you I was very scared at first and still do get scared if I am honest. But eventually you come to terms with it, and then the day to day living with MND takes over. We cope by not looking to far ahead, and deal with each problem as they occur, this means we adjust gradually, almost without realising that we are doing so.
Its hard to see those we love gradually losing their ability to do simple tasks that we take for granted but I try hard not to show how badly this affects me and try and make light work of things I do for him. He now relies on me for all his personal needs, bathing, etc but we get through by having a laugh, and I do genuinely enjoy doing things for him.
The MNDA have been a godsend to us, giving us a lot of support and advice. They will put you in touch with all sorts of people will help you.
We are lucky in our family and friends who have listened to us and cried with us and are on hand when ever I have my down times, which are not often but do happen. Don't beat yourself, or feel selfish, its a lot to deal with, but you will be surprised as to how well you cope once you are over this initial shock. Above all don't shut people out, the more you talk about it the less frightening it becomes. And talk to your mum, you will help each other. We (my husband Dan ) and I, don't hide what we are feeling and are able to give comfort when one of us is feeling low. I wish you, your Mum and family all the best. You have a difficult time ahead, but trust me you will get through it.

Kate
16th April 2012, 19:18
God bless you for those kind words Louise, my sister & I just want to be with mum & dad all the time but obviously work comittments make that impossible & besides they need their own time. Mum seems to have deteriorated since her diagnosis but ime hopeful that the MDT appointment on thurs will help her feel less isolated and worried. I talk to her all the time but the emotional outbursts she now experiences are more frequent & she is drained at the end of it all.
Love to you and Dan
Kate

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