Reassurance (or honesty) needed! Warning: potentially sensitive discussion.

[SarahWP]

Hi all

I was diagnosed this August and seem to have had a fairly rapid deterioration over recent months. My very first symptoms started late last year but progression really started around April, I would say - slowly at first but gaining more momentum recently. I can now barely walk, even aided, have virtually completely lost my speech, have trouble lifting both arms, some trouble chewing and swallowing and my neck is starting to struggle to hold my head up. On the plus side, I’m still eating relatively normally (albeit with care), haven’t lost weight and my oxygen levels are good.

What I want to know is...does all this mean I potentially don’t have terribly long, or can/do people sometimes live for years in this state (& worse)? I’m starting to work myself up into thinking that as it’s now progressing quickly, the prognosis is not good. On Friday I turn 51 and I just keep thinking how my life has changed since I turned 50- and whether I’ll get to see 52...

I know there are no definitive answers to this one. I’m just hoping there are plenty of examples out there that some quality of life can continue like this for a good while yet!?! But I do want the truth.

A hard one I appreciate, but I really want to know, and don’t know who else I can share these thoughts with.

Thanks all xx

Sarah

[Lynne K]

Hi Sarah, I'm sorry about your worry. I'm afraid that I can't answer your question.

I see that you were still awake at 3.42. Are you not sleeping well?

Happy birthday for tomorrow. I hope that you have a lovely day, Lynne x

[Guest]

my mam Was like you ,lived another two years, that was 20 years ago, it appears to have extended I was informed because of the care that is given ,she didn’t take any drug so I don’t know anything about that. do you have a diagnosis of pseudobulbar palsy or Progressive palsy,or was it ALS ?I had more information on it but unfortunately I loaned it to someone and they never returned it.

[Barry52]

Hello Sarah,

You ask the question that even the medical experts can’t answer because this disease presents differently in every patient. I offer my opinion based on 8 years of meeting people with MND and forging friendships with many.

You mentioned the loss of limb movement but this is not life threatening as many people get used to wheelchairs and you can have head supports to ease your neck weakness.

You say you are not loosing weight and eating normally with care so that is a positive thing.

Many of us cope with the loss of speech by adopting technology.

Even if your breathing deteriorates I know several people who use breathing aids which improves their health.

One overriding factor I believe is better than any treatment is positivity and the approach to solving the next challenge as the disease progresses. I wish you well on this journey and I hope you can suppress your anxiety.

Barry

[Deb]

Hi Sarah,

It's not surprising you feel so anxious, frightened and low. You have had such alot to try to come to terms with in a very short space of time. You must still be reeling from your diagnosis so it's understandable you are awake in the early hours.

I am no expert but I was told that everyone's MND journey is different so it is impossible to predict the rate of progression. I have had times of a fairly rapid progression followed by a plateau. I would say eat and drink well, do your best to avoid infections and dont be afraid to ask for help even if it is with sleeping because rest is really important. I had a really bad fall in June resulting in a broken leg and a pulmonary embolism because I was trying to do things that weren't safe so accept any equipment offered and dont fall ( it's a golden rule! )
Ironically now I am using my powerchair all the time I can do more things and have more independence.

Like Barry says positivity is really important but on a bad day it's hard to find the positives and it seems like one thing after another. I do try to take one day at a time because no one knows what the future will bring.

Sending you hugs and hoping today is better
Love Debbie x

[Ellie]

What I want to know is...does all this mean I potentially don’t have terribly long, or can/do people sometimes live for years in this state (& worse)?

Hi Sarah,

As you know, no one can answer your first question and, as to the second question, I can only give you my personal experience of living with ‘advanced’ ALS/MND and I am the first to acknowledge there is no right way or wrong way to live one’s life with an MND - each individual knows how they want to live and nobody should judge our choices. The last thing I want to do is come across as a sanctimonious prig, btw!!


I was diagnosed in March 2007, within a year I was in a wheelchair, had limited use of arms, useless hands, a feeding tube and a voice which was deteriorating. Not long after, I lost my voice and much of the remaining function that was left in my arms. My children were 3 & 5 at diagnosis.

I have lived “in this state (& worse)” , as you call it, for more than a decade - I just see it as living a different kind of life though, rather than being in any sort of “state” - and have thrived and have a good Quality of Life thanks to using technology, having great family and friends, getting good care, being positive and being surrounded by positive people, staying healthy, accepting any interventions offered which make for a better outlook and accepting that it’s up to me to ‘adapt & conquer’ (my motto )

Undoubtedly, I’ve had a massive dose of luck too - my initially fast rate of progression slowed dramatically and I have remained relatively stable over the last number of years, albeit with minimal function. Positivity alone will not stop us (eventually) dying….

I live a fulfilling life, thanks in no small part to eye gaze, as well as an ability to laugh (notably at myself ) I can still have dark moments, but far less often than in my first 2 years.

And I don’t countenance pity - if anyone shows me pity, they’re shown the door.

I hope you can find your own path through this, Sarah. Although MND is now part of you, it does not have to define you..

Sending hugs to you.

Love Ellie.

[Kayleigh]

Hello Sarah,

The question 'How long have I got left?' was at the forefront of my mind when I was diagnosed. However, as it's not possible to get an exact answer to that question, I try to ask myself the question 'How can I make the most of whatever time I have got left?' instead.

Obviously, we shouldn't be putting our heads in the sand about the implications our diagnosis (and, ideally, its good if we can plan ahead a bit), but I find that taking one day at a time helps sometimes, especially on the days when I am struggling.

Also, my advice is to keep in touch with your OT and physiotherapist, so that they are kept up-to-date with any new difficulties or changing needs you might have. The MNDA provide a factsheet which I have found is very informative, concerning equipment that might be useful for me now or in future (and, hopefully, equipment can be provided free of charge via OTs, wheelchair services, district nurse etc).

MNDA's Factsheet - Equipment and Wheelchairs:-

http://https://static.mndassociation.org/app/uploads/2019/03/14095610/11C-Equipment-and-wheelchairs.pdf

Trying to sort out the practical side of things helps me because it takes my mind off worries for a while and it also makes me feel like I am doing something positive, that will hopefully improve my quality of life. Concerning our emotional well-being, many local hospices offer counselling services, support groups and complimentary therapies.

I think you have already shown that you are trying to stay as positive as possible, about things. I try to do that too - but when I'm struggling to be brave and the challenges of life seem too overwhelming, I feel particularly blessed to receive the words of support and advice from you and the other forum members who generously contribute here - many thanks everyone!!!

Wishing you a very Happy Birthday tomorrow.

Love and best wishes to you and Sue,
Kayleigh x

[Kayleigh]

I forgot to mention Sarah, that I always read the MNDA's Thumbprint magazine because there are usually some very inspirational stories in there and it often includes tips and advice about equipment/technology etc that might be useful for us.

Link to online editions of Thumbprint:-
http://https://www.mndassociation.org/media/thumb-print/

I have noticed the MNDA always put a picture of people smiling on the cover - does the MNDA think we might need cheering up??? LOL

Cheers!
Kayleigh x

[SarahWP]

Wow, you are all so kind and inspirational- thank you! I think I just sometimes need just a glimmer of hope and you’ve certainly given me that. I think my downfall is reading comments on social media posts which say how grim this disease is and how people’s loved ones suffered. It is grim, we all know that, but we need to focus on the positives. You’ve all reminded me of that. I have many things to be grateful for and I’m certainly embracing all the help I’m given by my OT etc. I get scared, very very scared - not so much for myself as for Sue, who will be left behind. That’s what really breaks my heart. But it’s also my motivation for staying positive, and staying here as long as I possibly can.

Sincere and heartfelt thanks everyone for talking some sense into me. You’re all amazing. WE’RE all amazing - right?! 👍😄

I’ll raise a birthday toast (or 3, or 4...) in your honour tomorrow! 🥂 🎂 🍷 🎊

Love and strength to you all.
Sarah xx