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It destroyed my life!

By Sarah Finegan - Guest writer
Sarah from Wigston in Leicester tells you her story of a disease that changed her live forever in a space of only 12 months. Read Sarah's diaries to find out the seriousness of motor neurone disease...

Can you imagine what it's like to live a full, busy life as a single parent and then you discover that you have motor neurone disease?

It's a devastating diagnosis which changes your life forever...

That is exactly what happened to Sarah Finegan from South Wigston in Leicester last year. It's a condition where damage to your nervous system leaves muscles wasted and weak - Sarah tells you her story...

Dear Diary - Last year I could do anything!

My name's Sarah, I'm 36 years old and I was diagnosed with motor neurone disease last July. This time last year I was able to do everyday things, hang out the washing and working. I worked as a house keeper at a hotel. I thought I'd give up work and enjoy what time I've got left to spend with my kids and my family.

"I've definitely put any ideas or thoughts of a relationship to the back of my mind... Because I don't think anyone would want me..."

Sarah Flannigan - Guest writer

Twelve months on now and it's progressed quite quickly, quicker than I'd hoped. It's a muscle wasting disorder, it can start in the arms, legs or the throat. Mine started with my right arm, I'm now not able to move my right arm... My left arm and my shoulder also have been infected.

I have visible muscle wastage in my shoulders and now my legs and my tongue - swallowing now has become very hard. I'm having to have a peg fitted in - hopefully September time to be fed to my stomach - so I can't swallow. The only thing I'm able to eat now is soup, so my meal times can be quite boring.

"What do I want for lunch? - What kind of soup have you got today?" My nephew Christopher comes up to help me.

My house now is very limited... Really I just get up in the morning, come down, wait for my carers to come. I've got a stair lift, normally I'll sit here and wait for my carers to come, 'cause I can't wash myself... I can't even wash and dry my hands on my own or brush my teeth.

They'll get my breakfast, a build up drink, they'll make me a milkshake with a banana in it, so that gives me a bit of energy for the day. They spend about an hour here with me, get my tablets out for me 'cause I can't even push them out of the packet now!

I will probably sit down and watch TV for a bit. I use the internet quite a lot now, I've got a lot of friends on there who also have MND so that's really a bit of a lifeline.

When it comes to bedtime normally my daughter, she's 15, she'll help me to bed 'cause I can't even pull the quilt over myself... So she'll tuck me in and put my head where it's comfortable and then she'll turn the lights out.

Dear Diary - It changed my social life...

I'm a very out going kind of person and this time last year my friends would pick up the phone and say, "Are you coming down the pub?" - and I would be there in a shot. But now I'm having to plan, make sure I get the right taxi, make sure someone's going to be there, who doesn't mind taking me to the toilet.

I still love going out, you know getting out and about... (laughing)... There was me, my sister and her partner - Chris and Laura - we'd been to the pub, had a couple of beers and we were walking back. There's another pub on the way back and the pub's front door was wide open. Chris pushed me, parked me up outside the front door of the pub and everyone ran off and left me there!

The bar woman stood behind the bar thinking, "Well, what the hell do you want?"... (laughing)... I didn't even get a drink!

When me and my friend used to go out we would only plan to go out just for a couple of drinks on a Friday night, but then we'd roll home in four in the morning, 'cause we'd found a club open all night. We used to love going clubbing, we had some great nights - non-stop dancing! I'd love to do that now, but there's just no way, I can just wiggle my feet, which is a shame 'cause I'd like to be out there with everyone else.

Shopping - I find very hard now to do. I used to like going out shopping for my own clothes, but even if I go into a shop - I can get into the shop, but I can't get my arms up to flick through the clothes... So people have to do that for me, but they might skip pass something and I'm like no hang on, I want to look at that one there! That can be really frustrating. I mean, just because I'm in a wheelchair doesn't mean to say I don't like going out, doesn't mean I don't like going shopping, doesn't mean I don't like wearing short skirts...

You know, even though I'm in a chair I've still got the mind I had this time last year. I'm still the same person! I think other people might look at me and hear the way I talk and think my brain isn't working as well as it used to - but it's working exactly the same as it was. You know, it's still racing away, still wanting to do things, I still have ideas of my own in my head that want to do.

What I would like to do know is go out for a walk 'cause it's a lovely day... "Chris - can you just pass my chair over... thank you?".

We're going over to the shop to get some bread and milk, but be careful at the top 'cause there's no ramp for me to go down... So you'll have to take me down backwards.

It's funny you don't think about ramps when you're able to walk. It's only since I've got the wheelchair that I've realised that there's no ramp on this path. So even with my electric wheelchair I can't come in and out on my own. I've always have to make sure that there's someone with me to push me up and down the curbs...

"Chris... You see them buildings over there?" I bet this time last year if I was walking up I'd get a few wolf whistles from them... Either that or I'd be over there chatting them up!... (laughing).

Dear Diary - It affected everyone I loved...

Motor neurone disease has not only affected me personally, it's affected the lives of everyone else around me.

I know my family are suffering, the kids are too - even though they're handling it really well. Laura, she's 15 and she's starting her last year at school. She's loves school thankfully and I'm obviously worried that this is going to affect her most important year in school. Luckily she's got great support from teachers and not only her friends, but also my friends and family.

My son, he's 16, he's in Ireland at the moment with his dad. He finds it hard not being here for me, I suppose he wants to be here. Again he's coping really well!

You do find friends sometimes back off, because they don't know how to talk to you. You do loose friends, but I can understand how hard it is for them to see me deteriorating the way I am. But also you gain some fabulous friends. I've got a lot of good friends behind me and relatives.

Matt is a friend of mine, met him off the internet. He'll come round - pop in for a coffee and he'll probably get roped into doing some re-wiring somewhere, or wallpapering. When I first met Matt, I didn't have MND yet he stuck by me as have a lot of other good friends of mine.

If you have got friends in similar situations as myself, I think the best thing to do is treat them as they are, as they were. Don't treat them any different, they're still the same person on the inside and they still want the same things. They still want to go out and have a laugh, they probably want quite times to themselves as everyone does... We just don't treat them any different!

I hadn't seen my nephew for about two years and about three or four weeks ago, I was having a bit of a rough time - on a downer, so I went down to my sisters for a break. My nephew Chris came round - for supposedly a cup of tea - and he nearly spent a whole week there. Then, the next thing I knew he was on the internet looking for jobs in South Wigston. His excuse is that me and Laura need an man around the house!

My daughter totally opposes me having a relationship. I think now personally myself with MND, I've definitely put any ideas or thoughts of a relationship to the back of my mind... Because I don't think anyone would want me... Mind you - it doesn't stop me from looking! I was always a passionate woman and I probably still consider myself being so...(laughing)... Hey ho! (Laughing) I'll see how I go!

last updated: 30/09/05

Have Your Say

Are you familiar with MND? Post your advice on dealing with the disease and your supportive message to Sarah here...

susan brown
my partner mark kealy who got mnd 2 years this august and he in a home now. he only 43 and now he on a vent in manchester...l love him very much and he my life. we been together 9 years now l am waiting 4 hope.l never give up on mark never. as long as l am alive he lives to..many thanks susan brown.

velma
hi sarah yes i know what your going through as i have lou gehiergs disease it took my speech and i now have a walker but it cant rob me of my faith in god

NATHAN
Hi there Sarah..I fully understand what you are going through..4 years ago my wifes mother was taken By MND,and we were all obviously devestated.Me and my wife alredy had 2 chldren and 7 months ago had our 3rd, a little baby girl...What we did not expect was 3 weeks after having our baby on my wifes 40th birthday she was told she had familial MND..I guess what i am trying to tell you girl is always try to stay positive and Never give in like our family is

Yvonne Heka
Your a load of laughs I like your attitude, my stepmum Dawn was diagnosed last year 31st August 2005, she is only 44yrs old, we are all trying our best to cope the best way we can, but she is finding it hard I have to push her to go out and travel and enjoy life while she can. Life can be cruel and life can be kind but its so unfair, thank you for sharing your beautiful story. kind regards Yvonne (NZ)

Hayley Comery
Your story made me cry. My friend has MND and I never realised how bad it became. I so hope they discover a cure soon because it is such an evil disease. My friend is the most fantastic man in the world - like a dad to me and he doesn't deserve this. Thank you for being so strong to share your story. It has made me more determind to fund raise this year!!

Elaine Shadlock
My husband was diagnosed June 2005 and I am still trying to come to terms with it. He is quite well at the moment with just his hand and arm, although his legs feel tired,he seems to be coping. I feel very sad and alone sometimes feel like running away. I am so frightended not only for him, but for myself and my sons. Hope you are okay and the best of luck to you, let's all pray for a miracle

Kori (Sproggy)
Hey Duckie .... no-more Quacks for you .... spread your wings and become the Swan you always have been. The world will miss the smile you gave to all.

Susan Brown
My parter Mark Kealy got MND. He was diagnosed on 26 August 2004. l know how you feel inside.

marie meehan
your story is an inspiration to all of us that dont understand the severity of mnd i wish you well and hope they discover a cure soon kind regards marie.

Barrie Kerr
Have mnd myself. Diagnosed 14 June 2004, while driving 44 tonne lorries for a living. 17 July 2004 ended working, unable to climb into cab unaided. Now cannot go down stairs as will not be able to get back up. This is worse than a dogs life but still hanging in there. kerrfull@hotmail .com

Lyn Bayliss
have just read your story and it has touched my heart - i lost my dear Dad to MND almost 6 years ago and still miss him terribly he like you was so positive and brave - keep living and loving - you sound a wonderful person , stay strong and God Bless, you are an inspiration to all XXX

marian
i am a nurse looking after a patient with mnd and doing a course on ltc she has given me permission to use her story for my assignment keep strong keep well you are prescious

mary hayter
dear sarah your situation sounds like the one I find my self in I am just 50 with husband 2 kids 10yr old girl as I have had a stroke at 47yrs old I have learnt how to walk and get around after a fashion, I don't know much about mnd your chat makes me think I shall look in to it, good luck with everything you do sarah just try to believe deep down you are going thru all this to end up with a stronger character than you were before , you probably don't want to be stronger than before, you are probably happy as you are, I'm sure you could make a difference some how along the line, sorry if these comments are too long winded and of no help.love Mary. I would be proud to call such a person as your self a friend xxxxxx

Sarah aka RavishingRosey
Sarah aka Ducks....the comments here are a testimony to your strength of character and to the very kind and generous person you are. I will always remember you cheering everyone up in chat and now, when you are suffering you are still doing the same, thinking of helping and inspiring others. Sometimes there seems no justice and life seems cruel, but hang on in there and keep strong, my thoughts and prayers are with you and your loved ones, Sarah xxx

Sue and Irene
Loved your story. We are visiting Leicester next week from Melbourne (Aust)and would love to call and say hello, any chance ? My fathers family all cam from Wigston. KEEP YOUR CHIN UP IF POSSIBLE, LOTS OF LOVE S AND I

Aquanaut
Ducks, its hard but keep smiling sweetheart, but then I know you will, xx

piX
hi sarah - i'll never ever forget the first time i saw you ..and you So know what i mean by that !! your strength , spirit and passion for life has always been the essence of you and that will never change . much love and friendship as always , Mair xx

Nobby Clarke
Hi Sarah I saw you on TV and i have to admit it made me extremely sad. After now reading your article i can see that the "Duck's" that i respected so much is still very much active. I Think of you every day and will pop round to see you Take care Gorgeous. x x x x

Tracy (AKKA Canny)
Hi Sarah, before you were diagnosed I'd only known about MND because of Dudley Moore. I watched his documentary and how frustrating it was for him and can only begin to imagine how frustrating it can get for you and other sufferers. At Dee's party you sid that you'd heard of people with MND living beyond 2 years. Dianes father, Aime & Jeannine have all exceeded that time and you will too. You have a huge group of friends who love you for you no matter what. We know what a wicked sense of humour you have and how you love to party. We're sending you a copy of our party where you stole the show singing girls just wanna have fun, among others. Party on hun. Big Hugs 'n' Kisses. Tracy & Rich MWOAH!

Lindy
It'll be twelve months next week since I lost my nan to mnd,reading your article reminded me so much of her,stay strong and take each day as it comes,my thoughts and prayers are with you

Paul & Paula
Sarah you are always in our heart we both love you to bits. YOur courage and strength are admirable. Be strong, stay safe. BJ & Phe xx

Ken (norb)
ducks you are a great person to talk to and reading what others have said about you you are aone very loved person i hope to chat to you soon ps look after the big burd you know what shes like big hugs from me

BRENDA
I D LIKE TO SAY TO SARAH TO KEEP YOUR CHIN UP GIRL , UN R VERY NICE AND BRAVE ....AND I DONT MEAN THAT IN A PATRONISING WAY AT ALL. GOD BLESS ANDTHE VERY BEST WIHES AND LUCK 4 THE FUTURE TOO.

Richard Scherff
I found out yesteday that Ihave als. I know it is very scary! Keep fighting Rich

May
Super article Sarah. I met Sarah on our MND website - I lost my husband aged 48 this year with this hellish disease. Sarah has a fantastic sense of humour and a whole lot of courage. She is an inspiration and a very special woman. Keep it up ducks! xx

Hayley (19)
I'm so glad MND is becoming more recognised, I recently lost my mum in April to MND, she suffered for two years with it.She sounded so strong and determind like you and got through everyday as it came. thankyou for sharing your story with so many people, It helps me to realise its not just me whose going through this.

fliss
Hi Sarah I just saw you on tv. You have a great attitude and I hope you can remain strong. I'll be looking in on your diary from now on to see how your doing...Take care and stay strong xxxx fliss

St George's Prayer Group. Derby
Saw you on TV,you looked almost as good as you do in the flesh!!. 12 months since we met and you are still an inspiration.xxx

diane holmes
My dad also has MND,he has had it for five years now,in November he will be 80yrs old,it's not going to be easy you really need a good support team.

Rachel
Duckie you are one spot on lass! Your fight amazes me chick! Even if you are a bad influence (rovers) love ya hun xxx

Lorna
Ello mummy :) your a star and ur so brave and im so proud of you ... wether your ill or not, your still my mum, and i'll love you forever xx

Roy & Dee
Sarah AKA Loony_Duck AKA Pert_Rabbit ;-) (Oh those early days of MSN Chat). You are in our thoughts and prayers daily hun as is your family and other friends who are supporting you. Keep your spirits up sweetheart. All our love Roy & Dee xxx

caz
sarah is my sister,and i just must say watching her deteriote with this illness is heart breaking her strength and courage through it all has amazed me shes a star and i love her to bits...

diane
that was a very moving piece ducks, I know you will fight this thing 100% you are made of strong stuff.

Patrick
I just want to say how brave Sarah is and hope everyone prays with John and margaret Hallowed be thy name

sarah and austin aka geri and oz
hi duckie hun just a little note to let you know we are thinking about you and hope you keep on fighting love n hugs geri xxxxxxx

Anne Scott
Thankyou for being so honest Sarah. It's obviously been a mad year for you and I cannot imagine how you coped with it all. I shall pray for you and I hope you shall know peace in the midst of this time.

Tonym
Hi Sarah, as a fellow sufferer I can only reiterate what the others have said. Stay positive, keep your sense of humour and with the love and support of those around you i'm sure you'll cope with this awful disease. It's a brave move publishing your condition. Stay strong someday soon they will find a cure.

Amie
Great article! I hope loads of people read this. I was diagnosed at 31 years old, I am now 38. I know it's especially hard when you have young children. Mine are now 9 and 13. You hang in there! You are an inspiration to us all!

Peter
Hi Sarah good to see your promoting awarness of MND. We support each other as best we can. You certainly give me a lift whenever we chat. Try and keep positive, your an inspiration. love Bluepete

Jeannie
Hey Sarah, as you know you have to keep an open mind and keep a positive attitude to fight MND, I know to well how hard it is to battle this awful disease. Being diagnosed with MND myself at the tender age of 22 with two young daughters to bring up is very hard, not is it hard for me but it's hard on all my family. Ive had MND for 5 years now and what a roller coaster it has been. Sarah your strength and courage along with your great sense of humor will help you battle this dreadful disease, keep fighting my thoughts and prayers are with you all the way through this terror journey that you will endure. love Jeannie xxxxx P.S great article hun ;-)

Rob Marshall
Hi Sarah, my duckie! Good to hear you. ;-) Keep up the great work.

Esther Camp
Hiya Sarah from one sufferer to another i'm always here for you just wish I lived nearer so I could come and see you. We have to keep positive that the cure is just round the corner before anymore peoples lives are devestated as ours have been. Hugs and loadsa love Esther

John & Margaret Sarahs Mum & Dad.
We are so proud of our Daughter. She has helped so many this past year with MND.We Pray and ask others to Pray with us.

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