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john
5th January 2015, 13:49
This has been posted on the alstdi website this morning. For those looking for hope(and who isn't) it may be worth spending€10 euros. It may be that the guy was always going to live 36 years or there may be something in the book which provides an insight into how anyone can do this.

DeeBee
Posted: Monday, January 05, 2015 8:37:17 AM
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Quote
Andy has had MND for 37 years and talks about his longevity in his new book...........

http://imnda.ie/shop/against-the-odds-living-with-motor-neurone-disease-by-andy-mcgovern/

....., part of his protocol seems to involve a combination of Guinness, Lourdes and Positive Thinking. Not things that you could try out on the mouse model.

'I am grateful to be alive today. I live a life filled with confidence and purpose. MND has changed my life completely. I am now a different person to the man I was before my diagnosis. To view it in a positive perspective, it has enriched my very humanity. It has made me a humble and considerate person. It has allowed me to now live my life at a slower pace, a pace where I can take time to enjoy my life thoroughly. I savour each moment. I relax and listen to the silence. It has much to say. I am at peace with my inner self.'

A.M.

MND, limb onset, diagnosed 2006. London. Granted UK Disability Living Allowance ( level 3 ).

ccinjersey
5th January 2015, 15:43
This looks like it's a very inspiring read John, thanks for sharing. Here is a little more of what the author said from the link.
CCxox



- At the age of forty-three I was on top of the world. I was married with a wife and six children, I had my own business and the world was mine. As I busily planned our future, I was not to know that the hand of fate was about to intervene and change everything. Our dreams came crashing down on us and all our hopes and aspirations lay shattered at our feet when I was diagnosed with motor neurone disease, a terminal illness of the central nervous system.

The story I now share with you is one of picking up the pieces and putting the jigsaw back together. It is a story of digging deep to find the inner hero and summoning every ounce of courage and strength that a human being can find. During the early years of this disease I experienced the daily struggles of living with a disability: frustration, anger and feelings of helplessness. Then slowly, like the phoenix from the ashes, I shook off my mantle of despair. I came to accept my disability, I reclaimed my life and, gradually, I found my rainbow’s end. To my amazement, I once more tasted the joys of living.

My greatest desire is that my story will bring inspiration to other disabled people to have the courage to deal with their situation. All royalties from the sale of this book will go to the Irish Motor Neurone Disease Association (IMNDA), which supports those who suffer from this devastating disease and also those who search for a cure for it. A cure may not be found in my lifetime but that does not worry me. If I’m not here to witness it, I will smile from the heavens above, knowing that I have made a small contribution to this achievement.

As I approach my eightieth birthday, I look back on my own life. It has been a wonderful life, with all the emotions that any human being could expect to experience. I grew up in an era very different from today. I believe that no generation has seen as many changes as the people who were born in the 1920s, 1930s and 1940s. I know that we all live in periods of change but the changes that have taken place in Ireland over the past seventy years have taken everyone by surprise. I am fortunate to have witnessed this period. I write my story so that my children and grandchildren and future generations can know something about the Ireland of the past and the way of life of its great people.

In 1977, I was diagnosed with motor neurone disease. Today, thirty-six years on, I am still alive, much to the amazement of my neurologists. As this is a progressive disease, I am now severely disabled and have lost almost all power in my hands and arms, but I am grateful for the abilities I still have. I wrote this book with the help of modern assistive technology, in the form of Dragon NaturallySpeaking voice-recognition software. The Irish Motor Neurone Disease Association lent me a computer and the software, which allows me to write by speaking into a microphone and on occasion using a foot mouse. The whole process demanded a lot of concentration but it was the only way for me to tell my story.

A disability can ignite initiative in a person and become the stepping stone for them to pursue other projects. This is the reason I’m writing the story of my life, as well as wishing to pay tribute to the inspiring people I met along the way.

njm
5th January 2015, 15:52
John:

thanks for this. When I was foirst diagnosed and was frantically searching the internet for glimmers of hope I came across Andy's story. It kept the spark of hope alive. It is an exceptional story of incredibly slow progression. So they do exist albeit rare. I will source the book to read.

Thanks

Charles

Bilando
5th January 2015, 18:17
A great post John ! Regards Ian

Jock
6th January 2015, 08:46
Cheers John.

Trevorhb
6th January 2015, 10:26
I believe the question we have to ask ourselves is, do we want a life when we are severely disabled and unable to do even the smallest task? I know for myself the answer is a definite no, that is no life at all.

pete
6th January 2015, 12:13
I believe the question we have to ask ourselves is, do we want a life when we are severely disabled and unable to do even the smallest task? I know for myself the answer is a definite no, that is no life at all.

Couldn't agree more.

Terry
6th January 2015, 12:13
I agree with Trevor we should be aloud to go when we don't have much quality of life and want to.

Jock
6th January 2015, 13:01
I agree with you gents. 35 years blinking an eye lid and little else is not 'life' to me, but I respect the right of others to feel differently.

crackers
6th January 2015, 13:10
I feel that having suffered the indignities of detirioration with MND we should be allowed to die with dignity, when and if we so choose.

Kelvin

Trevorhb
6th January 2015, 13:43
We all seem to agree lads, but what do the girls think?

Nettie B
6th January 2015, 14:37
I'm with you Trevor, of course, but a few years of slow progression would have been kinder for you and all the other poor bulbar folks.
It still sounds an excellent inspirational read for those of you with a reasonable quality of life. I'm sure lots of you would benefit from reading this book.

Davec
6th January 2015, 15:34
I have discussed this many times with Sharyn, she feels she has no quality of life being fed, dressed, being taken to the toilet and then being propped up till bedtime whence the routine starts again.
She has asked me to put a pillow over her head to end this misery, I could never do that, but it should be her allowed choice on how and when she wants to end it.

Ellie
6th January 2015, 16:20
I agree with you gents. 35 years blinking an eye lid and little else is not 'life' to me, but I respect the right of others to feel differently.

I don’t know from where you got the impression that Andy can only blink.
According to him, (08/08/2013)
I can still walk, talk, see, hear, taste, touch and smell. I can laugh. I can smile to brighten up someone's day. I can love, I can write, I can enjoy fun, I can eat and I can drink – even Guinness through a straw tastes just the same.

As for quality of life, that is a subjective issue.

Steve
6th January 2015, 16:31
While I can still push air in and out of my lungs I will carry on.

I fully understand those that want to end things on their own terms.

Jan
6th January 2015, 16:51
I for one want to end with dignity, I am undecided whether to go for a peg and will probably only do so that I can take medication to ease pain towards the end. I already have a DNR form filled in. I was so active before all of this and do not want to get to the stage where someone had to fulfil all my basic needs

willsandco
6th January 2015, 17:03
I am fighting every inch of the way. I am off to Sheffield on Thursday to get the feeding tube fitted on Monday 12th January. I don't need it at the moment but I might do later on. Mind you, I am aware that this positivity may well just dissipate as I become more infirm and more dependent on other people (not looking forward to that!) At the moment, I am taking all the advice and getting things done! I am with you, Jan. I don't want people having to do everything for me either Joycie

Alig2014
6th January 2015, 17:26
There is no right or wrong decision. It really depends on your progression and where you are. Jean started choking on her food in February but by then she was unable to walk and I was feeding her as hands were almost useless too. As Jean was limb onset speech/ eating were the last things to progress. Unfortunately She wasn't offered PEG until it was too late but I don't think she would have had it.

I think it's a good idea if your offered early and still have a good quality of life as obviously nutrician in the end will have an impact on your symptoms and progression.

all Jeans pain relief etc were given through syringe driver and patches so if you choose not to have it pain relief is not a problem.

I wish no one had to go through this awful disease :-(

Alison x

Nettie B
6th January 2015, 17:43
I'm constantly humbled by you all. You all have such different views and they are ALL right.

I don't think I could be as brave as any one of you!

Love to you all XXX.

Alig2014
6th January 2015, 17:48
Hi Nettie, I got the discharge summary for Jean today listing her medication.

One was called Hyocine hydrobromide patch and says it was to help reduce saliva and secretions. Did they offer Trevor an alternative. They are basically for travel sickness. I wonder if OTC travel sickness tablets might be worth a try.

Alison x

Springtime
6th January 2015, 18:10
Very Interesting and heart wrenching post. It is a very indivdual decision and I think all agree the same thing it depends on quality of life. I am with you Nettie very humbled by you all. And much admiration for those people like John who are constantly reading and researching for a cure.

Davec
6th January 2015, 18:15
The hyoscine hydro bromide chewables are also found under "Kwells kids"
Dave

Candle
6th January 2015, 19:03
I'm very pro-choice. Only the person in a given situation can decide what is right for them. I was surprised how hard my mum fought and how she still managed to enjoy a little of her "old" life. I would previously have imagined her new life wasn't a life worth living but I would have been wrong.

pete
6th January 2015, 19:20
Hi Nettie, I got the discharge summary for Jean today listing her medication.

One was called Hyocine hydrobromide patch and says it was to help reduce saliva and secretions. Did they offer Trevor an alternative. They are basically for travel sickness. I wonder if OTC travel sickness tablets might be worth a try.

Alison x

Hi Alison,
Your spot on ,kwells are the one I use and do work ,and no unpleasant side effects

Jock
6th January 2015, 19:27
I don’t know from where you got the impression that Andy can only blink.
According to him, (08/08/2013)
I can still walk, talk, see, hear, taste, touch and smell. I can laugh. I can smile to brighten up someone's day. I can love, I can write, I can enjoy fun, I can eat and I can drink – even Guinness through a straw tastes just the same.

As for quality of life, that is a subjective issue.

Hi Elle - For the record my line was not in reference to Andy, but rather 'You Tube' cases and one case not far from me where someone has been 'living' with MND for over 20 years, I could have said 10 years just as easily as 35.

All power to Andy - especially still being able to walk!

Queenie
6th January 2015, 21:08
I apologise for my ignorance but I am struggling to understand MND, my husband was diagnosed in March 2014 with ALS and told he had it it a year before confirmed diagnosis, you read people pass within 3 years and then you read people have it for 10 year plus, just how do you deal with this are people having the wrong diagnosis???

Springtime
6th January 2015, 21:37
Hello Queenie,
I understand it is so hard to get your head round MND and the way it progresses. I am sure somebody on this site will answer your post, sorry I can't be more helpful to you but I really think there are quite a lot of different types of MND, affecting different people in various ways but with a similar outcome.

Alig2014
6th January 2015, 22:02
Hi, there are several different types of MND and in Britain they seem to group them altogether. My friend had limb onset ALS which started in her legs. There is also Bulbar onset and respiratory onset ALS. ALS tends to be the quickest to progress and for Jean it was pretty rapid.
There are also other types of MND. I know PLS is thought to be pretty slow in progression but there is evidence to suggest that at a much later stage it can turn into ALS. Progressive Bulbar Palsy and progressive muscular atrophy.

Some don't have all the symptoms and I'm not sure how they can tell the difference in diagnosis at the beginning of symptoms. I would imagine they have to see how they progress.

And just to confuse you even more there are two subtypes. Sporodic which means anyone could develop it or famille which is genetic.

Add to that the each person will then progress at different rates. Jean would plateau for a while and then deteriorate quickly and then plateau again.

Sorry if that has confused you more and I have probably missed some things out but that was all I could remember off the top of my head. You probably guessed I spent a long time on Google in the last 12 months.

Alison x

Queenie
6th January 2015, 22:29
Thank you both I have researched thoroughly to for answers but never find them, you read about people with ALS who pass within 3 years then you read they can live longer I know it depends on the person as all is different to each, my husbands legs was first to wobble and cramp up and now arms are weakening then breathing not to good but hospital are happy with it but his throat muscle have shown weakness now but things have settled in the last month fingers crossed it stays like that.

Alig2014
6th January 2015, 22:34
All I can advise is to keep one step ahead. After Jeans first choking episode I had researched how to feed her and what foods to avoid. By the time the speech therapist came to see her I was already feeding her the correct way (chin down). Just don't rely on the doctors because they are not all familiar with MND. It's good to have some knowledge so you know what is available and what you can ask for.

Alison x

GrannieAnnie
7th January 2015, 09:54
I fear for the day when I too will need help with everything. I would like to choose to go in a dignified way - but in the meantime the forum and all it represents keeps me going. So much valuable information.

Nettie B
7th January 2015, 14:59
Alison. Yes, Trevor was prescribed the patches .. one a day to stick behind the ear.Trevor tried them for a couple of days. The saliva was like a torrent! So he stopped. The GP has another idea up her sleeve but is checking it out with the palliative care team.
Thanks for trying! Also the collar is helping Trevor a great deal.
X Nettie.

Alig2014
7th January 2015, 16:55
Pleased to hear it. Some medication can take a week or too to get into system. Doctor should be able to give you a tough timeline of when you should see results.

Hopefully get it sorted soon.

Alison x

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