View Full Version : first truthful conversation

1st May 2015, 19:21
Hi all , l have just had a chance to ask Tom how he feels about having mnd. He said as long as he doesn't sit back and give in easily he accepts the outcome. I was wondering if anyone is also taking this route and have you stayed in that mind set or changed . Lorret

1st May 2015, 19:30
It seems like Tom has the right attitude. Get on and live life the best you can on that day. Make the most of any equipment that might help he get out and mobile and anything that makes live a little easier so that he doesn't have to struggle more than necessary.

All the best, Terry

1st May 2015, 19:51
Yep, he is right. Don't look for problems they come along anyway. I came to that conclusion and now its every day for what its worth. I feel better about myself now than when diagnosed a year ago. I feel fine have no voice but then I am so used to that now that its almost a norm. When the next thing hits me, then I might think differently, but one can only adapt as one goes along and Terry is right put in place things that make life easier. Everyone on this forum has had some sort of experience or another and there is wealth of information out there, so just ask. Its not easy but together I am sure you and Tom will do well

1st May 2015, 22:14
AnnE, I could have written that myself. Much love Joycie xx

Night walker
2nd May 2015, 08:13
Good on Tom!!!
I love his attitude a lot and the people on this forum are the best there are.
Stay reading and posting on here Lorett there are lots of lovely people and a wealth of info in the old posts.
Best regards


2nd May 2015, 09:13
Its good to know you are there in the same struggle. Tom has a very positive attitude but I am not finding it so, changing from angry to scared of the diseases effect . We are nipping to the west of Ireland where Tom s family are, guaranteed to get well looked after .

2nd May 2015, 09:38
When my husband was diagnosed last March he stuck 2 fingers up and carried on playing his gigs, going out with friends in general and to gigs, having holidays nothing was stopping him he went full pelt!!! then we hit a brick wall within the last month or two his whole body just said no more now he is in his wheelchair, extreme fatigue, coughing and choking episodes etc etc but he says with a smile I had a bloody good fight with it for a year and yes he still trying to fight it and the last fight in his eyes will be he will play his last gig ever!!!

2nd May 2015, 09:51
same for me, Queenie. We hit the road after diagnosis in March 2014, did so many wonderful things, visited precious family and friends, attended reunions, had an unforgettable time...........now my mobility is questionable, using a wheelchair. Our mantra has always been to live, love and be happy.
We naturally are saddened, very saddened that MND has come into our lives but we are rising above it! Things will get worse, we know, - but we have had a really good time! Much love Joycie xx

2nd May 2015, 09:53
Very true Joycie it's all we can do is ride this god awful storm with our loved ones xx

2nd May 2015, 10:24
Queenie, my life's mission these days is to make life easier for Peter and my daughter. We are building fantastic relationships with all the medical professionals so he gets all the support he needs when it all goes belly up! I have the most immense admiration for all you carers out there - it must be dreadful watching this disease ravish our loved ones. Much love Joycie xx

2nd May 2015, 22:07
Hello Lorret
I was diagnosed in 2013 I am trying to maintain my muscles by going to the gym swimming and cycling.
If you want to pm me we can go into details

Pam S
3rd May 2015, 15:30
You are such a brave band of people, I hope I can live up to you all when we get Dave's results this month. Pam S

3rd May 2015, 17:50
Great to hear from you about your own ways of managing. We have four allotments which hopefully keep us fairly fit :) . We are often on the plot till 8 in the evenings, the veg and fruit seem an added bonus

6th May 2015, 11:58
Its great to hear such positive input from contributors to this thread. Over the years I have professionally been involved with examining all forms of ailment and death. Believe me what we have is frustrating and incurable but there are far worse diseases and ways to leave this mortal coil. What would we do without love and care in our final journey !!

6th May 2015, 14:43
Hello Lorret
Allotments are good but your not going to get any CV training with a shovel or carrot in your hand.
Don't forget we die from breathing difficulties.

6th May 2015, 15:10
T-Rex. whilst I do appreciate you have your own ideas about our journeys to the inevitable conclusion, I know other people do have wretched demises but every doctor I have ever spoken to about mnd will say, quite categorically, that is the one disease they never would want to have. Ask anyone who has cared for a loved one who has died with mnd. It is more than frustrating and incurable. It is vicious, evil, invidious and hateful. It locks you in, takes away every stick of your dignity and self respect, tests the strongest relationships and breaks so many hearts in the process. Joycie

6th May 2015, 15:30

Getting out and doing anything is good especially if you enjoy it. I do think that moving every part of your body is very beneficial and that includes the lungs. Over doing things could well increase the speed of your Mnd but lack of movement and stretching may well lead to the muscles getting weaker quicker and them shortening and possibly causing pain.

Above all, try to do what you like and can do, Love Terry

6th May 2015, 15:39
Hi T-Rex;

I can't help but to agree with Joycie. Mnd must be one of the worse things to have so to say there's far worse deceases is absolute rubbish. If I have too explain why then you have a very limited knowledge about Mnd.

Perhaps it's me that's naive, Terry

6th May 2015, 16:30
Ok all the advice is great . We are still very new to mnd and are still coming to terms with it. I certainly wouldn't rule out anything if others have found it works for them. Has anyone tried yoga, I used to love karate till a knee injury stopped me,but we used to do yoga breathing to unwind but not sure how this would work with mnd. Lorret

6th May 2015, 16:39
I had reiki yesterday, Lorret and I feel so energised today! I had had massages and indian head massage but I don't really like people messing with my muscles cos I am not sure how they behave! (Indian head massage left me with five days of neck pain) But yesterdays reiki was wonderful. See If you can get these through the hospice. I tried Yoga but my breathing was all over the place so couldn't continue. Love Joycie x

6th May 2015, 16:40
Well written Joycie and Terry, my beloved Sharyn died of this horrendous disease and to watch her die piece by piece,, day by day, hour by hour without any movement or voice would break anyone's heart

6th May 2015, 17:00
I have to agree with Joycie, Terry and Dave, T Rex obviously hasn't sat by the bedside of his soulmate and watch this disease take every bit of dignity and humanity from them. I think that he probably has not had any dealing with MND at all to say that there are worse things to leave this earth with.

I watched my darling husband fight this disease with every bit of strength that he had and I am quite frankly at a loss to understand why someone would say this. In fact in a way I think that he should, be made to sit and read the threads in here like Davec's and everyone who has lived with this awful disease may be he would think before he wrote such rubbish, I am not saying that it is the only terrible disease but it sure comes somewhere at the top of the list.

6th May 2015, 17:13
I was at the hospice today and had the most wonderful back, neck and shoulder massage, its made me feel a million dollars!

On another level I also agree with Joycie and Dave, the loss of dignity is for me personally the worst thing ever, I cannot comprehend any other disease worse than MND, I know that people get struck by all different kinds of insidious diseases but I don't know of one where you know what is coming for you, you just don't know the timeframe that it will come to freeze your body and your very last breath, its the anticipation of having to wait that is for me the worst thing imaginable (I have probably worded this all wrong but am sure that you all know where I am coming from - the brain is trying to work but theres no-one home!)

6th May 2015, 17:29
Great to get positive attitude from all the members . Tom has just got home from work after leaving the house at 7 this morning he is a ground worker not bad for a man of 68 he is made of stern stuff. Joking apart this will make it worse to watch him succumb to the horrible thing.

6th May 2015, 17:32
Before my Mum was diagnosed my only experience of MND was via my job as a Adult Social Worker. I can remember on a couple of occasions myself and my Colleagues returning to the office and saying what a horrible illness it is. I have always said it's the most cruel disease I have come across in my career and that I wouldnt wish it upon my worst enemy! Then my Mum went and got it!!! It's hard knowing what is probably due to come for my Mum.
I suppose everyone has their own ways of facing this disease.. but I reckon Tom has a pretty good approach and long may it last!
I can remember saying to my Partner shortly after Mum was diagnosed... well my Mum might have MND but MND hasnt got my Mum. Not until there is no breath left in her body, I know my Mum is in there somewhere and I'm going to cherish that piece of her until it is no longer possible. x

6th May 2015, 17:58
When my dear friend was diagnosed with this illness and I told other friends and family of her diagnosis many people would say 'At least it's not cancer'.

I don't think the average person that has never been touched in their life by this illness really 'understands' the devastation that comes with it, and what it takes for the person with this illness to cope, and manage an illness of this magnitude in their every day life.

If more awareness was given to als, maybe more pressure would be on for a cure sooner then later.


6th May 2015, 22:50
Not sure if I should join this debate but will voice my thoughts. T Rex hasn't explained his thinking but maybe if he did we would understand. To me mnd is not a nice way to go and the only plus, if that is not too controversial, is that it does generally give time to do things like Joycies bucket list. The person with the sudden heart attack or stroke doesn't get that chance. There are plenty of diseases which give considerable pain or months on end of hospital which mnd does not usually entail. There are people who meet violent ends like the victims of ISIS or their butcher John. The sheer horror of knowing that someone is about to remove your head.
I know all too well , like Dave c the awfulness of watching this disease take everything from a loved one but possibly there are worse ways to go but it does seem an odd way to introduce yourself on the forum.
Don't mean to be controversial and may be I have no right to speak, just thoughts and not intending to take anything from anyone's suffering.

6th May 2015, 23:19
Wouldn’t it be nice if we all could just pass away from ripe old age, nice and warm in our beds, free from disease, and having witnessed our children, and their children grow up.

My great Grandmother died that way at 101. The negative side to that is she also lived to experience the deaths of her parents, husband, siblings, children and grandchildren, and all of her friends. She outlived them all, and smoked two packs of unfiltered cigarettes a day!! Go figure ???


Nettie B
7th May 2015, 03:28
I find it hard to reply to this thread but equally hard not to. T - rex you may note the time of night. I am still waking at all hours in anticipation of my Trevor wanting help in the night. He died a month ago.
Suffice it to say that over 13 months from diagnostis I watched, supported and nursed a man who, previously, rarely sat still doing his waking hours, who loved public speaking, eating and drinking, fixing things, walking, gardening, driving etc etc. Week by week, in a relentless stream, he had every one of these "pleasures" taken from him. Speech went first. Most sufferers agree that this is probably the worst onset that strikes those with the Progressive Bulbar Palsy type of MND.
A month before he died he still had the "luxuries" of being able to type on his iPad with the knuckle of one thumb, being able to see the floor as his neck was permanently fixed 90 degrees from normal, being able to shuffle a few steps with the use of a frame. He also had the "luxury" of being able to breathe if only by using a tiny fraction of his lungs as the muscles in his chest were getting such a tiny spark of instruction from his brain.
13 months!! Prior to diagnosis he was simply slurring his speech during the late afternoon and evening. Oh and drinking fluids often made him choke. The dribbling that had caused him distress and embarrassment for at least the final nine months could not be stemmed until the final month by a drug that caused him dreadful constipation. Nothing else had touched it.
Throughout everything Trevor had complete function of his mind. He was totally aware of everything around him. That completely normal active mind was totally trapped in an increasingly unresponsive body.
We had a friend whom was a retired GP. He wrote to me after Trevor's death. He said that throughout his working life he had never known a more cruel disease than MND.
Who am I to disagree with him?
We had help from carers for the last week of Trevor's life which involved a Bank Holiday weekend.
Trevor was now so weak he could no longer hold or use his iPad.
He could not tell the carers what he wanted during the night.
I was asleep, exhausted, having had no proper sleep for two or three months, day or night until that week when carers came for four of those last seven nights.
Hopefully he died peacefully in his sleep, not fighting for his final breath!!!
This was all a living hell for him and not far off it for me either.
Rest in Peace my dear, brave Trevor! You had very little since Christmas 2013.

7th May 2015, 05:35
Thank you so much nettie for the truthful reply, I'm so pleased you have posted your own journey through this vile disease. It is comforting to know you are still on here as your help and knowledge will certainly give me strength when in need.lorret

7th May 2015, 07:56
I hope with all my heart that you, Nettie, Davec and Spring, continue to contribute to this forum. You have all experienced such sadness and we all, too, have walked the walk with you, to some degree. Trevor, Sharyn and Jim had become part of their lives and we grieve their passing. You all have seen this disease at its worst and experienced the trauma of caring for a loved one. This also applies to Jangobie and John and everyone else who has lived through the devastation this disease wreaks in its path. Besides which, you have all gained so much experience and that Is just invaluable, especially to those recently diagnosed. Please do keep posting and let us know how things are going! Much love. Joycie. Xx

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