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computatec
30th October 2011, 15:45
I have recently gone through one of those awful periods where mobility has declined further. This last week I have been thinking I must accept the fact that I am dying and looking for ways to predict how much longer I have. I found the answer to that, but along the way I found a paper by Mary Lyon which made me sit up and take notice. Here is the exciting bit:


Reasons for Living With ALS - By Mary Lyon, R.N., M.N.

Atypical Cases

"Walter G. Bradley, DM, FRCP, University of Miami, points out, "There are patients in whom the ALS has remitted; I have seen three and there are several in the literature. There is an even greater number of patients in whom the ALS seems to burn itself out; these patients stabilize and remain in whatever state they had reached by that time. A significant proportion of ALS patients have a much slower progression than the average; 10% of people live 10 years and 5% live 20 years."

I am not dying after all, I am living with MND. It is not a foregone conclusion that I will die from this disease. I may be one of the fortunate 10% or the disease may burn itself out. Who, except God, knows? In the meantime, I am going to carry on living with what I have got left.

Clive

wheelchairking
30th October 2011, 18:01
I am with you all the way on this. I was diagnosed 6 years ago. Within a year I was wheelchair bound and had to have a stomach peg fitted and expected the worst. Then it stopped. I've only had mild deterioration over the last 5 years. My consultant says that there is no reason for me not to live my natural life span [I'm 60], but on the other hand I might go down in 6 months [in other words she hasn't a clue]. I do have a good quality of life. Today I had a trundle down the local coastal path [ at Llanfairfechan in North Wales where the mountains meet the sea], then dropped in at the local pub for a couple of beers with some mates. I'm lucky in that I've had 5 years to adapt to my limitations and now they are just a normal way of life.
I'm sorry if people with unrelenting progress of this disease think I'm being frivolous, but I think that all should try and be positive and cherish that which makes life fulfilling [ family, friends, hobbies etc].

angnmick
30th October 2011, 18:18
Its great to hear such great inspiration from you both, at the moment we are waiting for Micks plateau (one thing after another lately) but normality is still something to look forward too, Thanks guys xx Ang

jen
30th October 2011, 19:56
I regard myself as one of the fortunate ones. My deterioration also seems to have slowed. Although when tired my speech is more difficult to understand. Most of the time I am grateful for the slow deterioration on bad days I sometimes wonder whether it would be better to get the inevitable over with. But then I would miss the kids grow up and I go back to enjoying what I've got now.

computatec
31st October 2011, 18:36
Wheelchairking, you have made my day! I have actually heard from one of the 10% atypical cases, so now I know it is a possibility.

I have found that the view of neurologists in this country is that there is no possibilty of remission, slowing down or any other relief from MND and then they go on to say progression is linear. I was told that Prof. Hawkins could not possibly have MND, that it was something else. Faced with total denial of the possibility of atypical cases by the professionals it is hard for us to have hope or exercise faith. We must resist this thinking and have belief in possibilities.

Clive

computatec
31st October 2011, 20:05
Hi Jen, my experience is very similar to yours and I have had the same feelings at times. I also get very weak and my speech is weaker at the end of the day when I am tired. I am 77 so I don't have such a strong motivation as you, but I would like to see my grandchildren grow up.

Clive

jadedjohn
31st October 2011, 20:39
Hi Clive

I can understand your drive to want to see your grandchildren grow up, I probably won't see my own children grow up. My son has just turned 6.

John

sarahezekiel
31st October 2011, 21:28
John

I was told that I wouldn't see my kids grow up too. I was told that by four doctors and made my Will, etc. I'm still here and not really progressing, so you never know! There is hope, so try to remember that. There are quite a few of us who have been knocking around for a while.

Sarah xx

Graham
31st October 2011, 22:32
Hi Clive,

All forms of MND exert the most extreme mental examination any person can have. It is no wonder we all buckle for periods. You are winning this latest examination.
I have a healthy disrespect for doctor who give us no hope. They are ill-informed. How are your cramps progressing? Have the cramping muscles strengthened any?

Best wishes

Graham

carolmike25
31st October 2011, 22:36
Hi All - it's that great unknown that's such a worry.
My wife Carol progressed rapidly through 2010 to the point where she only retained some head movement (and only with a support collar).
I was preparing the family for the next stage to happen during this year and yet here we are almost at Xmas and Carol's pretty much the same stage as she was this time last year!!
That's a positive in amongst everything that's been going on for us - even though I do know that Carol has some of those days when she wishes it was over.
But we're about to celebrate our grandaughters first birthday this weekend - something that we really didn't think Carol would see.
It's about taking each day as it comes for us now - keep the positive as much as you can - and as I tell everyone Carol's smile will light up any room in a flash - and we're all very happy for that!
Keep smiling everyone - all the best - Mike

PS - a quick hello to Sarah - I'm married to Carol from Newquay - you talk to each other over Facebook - cheers xx

computatec
1st November 2011, 13:32
John, I think we must reject very strenuously any timescale for the end of our life. My wife was called to the hospital to be present when the diagnoses was formally delivered to me. She was advised privately that I probably only had six months left. I somehow became aware of that timescale as well. That was thirteen months ago.

If you do not actively reject this news it will become a self fulfilling prophecy and your body will start responding to that and start giving up the fight. Reject it! Get angry about it! It is not the truth for you, it is an opinion based on statisical information. Doctors are human just like you, so they are not all seeing gods who can number your days. Remind yourself continually that the power of the human mind is beyond our imagination, so we need to direct it in working for our good.

This is a pep talk to myself as I slowly discover what I can do about what has happened to me. I hope it strikes a chord in you as well John and any other patients who think the outcome is inevitable and we can do nothing about it.

computatec
1st November 2011, 14:58
Hi Graham,

Thanks for the encouragement. All my cramps stopped alltogether earlier this year. It suddenly dawned on me that I had not had any cramp for some time so I did not record the date. I have not noticed any improvement in muscle strength, but have maintained good control of my right leg. I found your advice on stretching against a cramp was the best way to end it quickly and never took any medication for it. Now I get cramp in my arms if I try to make them move beyond their comfort zone but the cramp stops as soon as I stop the movement.

Regards,

Clive

john
1st November 2011, 15:06
Clive ,
I think you said in the past you do not like American sites but if you log on to Patients like me you can look around at other patients with ALS as they call it and you will find plenty of them there who have been living with the disease for over 10 and over 20 years. You can get more involved if you wish or just leave it at that but you will find it reassuring that there are plenty of examples of people who are beating the odds so why not you?

If you hang on in there is even a better chance than ever of a cure!!
Best wishes,
John

computatec
1st November 2011, 17:50
Thanks John. I will have another look at that and keep an open mind. I need all the encouragement I can get.

Clive

Crazy girl
1st November 2011, 21:17
My husband seems to be going through a rapidly progressive stage right now which is hard....but some of this has really helped me feel he might possibly be around a bit longer so thx for starting the discussion and all positive comments.

Tracy

john
1st November 2011, 21:30
Clive,
May not make you live any longer but may make your stay more pleasant. Irene takes quinine sulphate for cramp and has not had any for over 12 months except for one night when she forgot to take her tablet.

John

Z3 Driver
1st November 2011, 23:54
i dont look or think about time scales at all , i just take each day at a time and enjoy it best i can . im 41 and what will be will be.

A healthy person somewhere who doesn't even think about dying at all could be killed in a car accident tomorrow , so guess in some ways we are more fortunate than others as we know where we could be heading.

So enjoy and embrace every minute you have as who knows whats around the corner.

MND Connect helpline