Coping with uncertainty

[SueM]

Last week I finally had an appointment with the Neurologist who specialises in MND. We had read all we could find about PMA but had hoped to get more information regarding disease progression, however of course this didn’t happen. I was wondering how people cope with the uncertainty of this disease? I have asked to chat with the Clinical psychologist, but there appears to be quite a wait for this.

[matthew55]

Hi Sue, I remember the first time I realized I had MND and it was devastating. Now a year later I just take each day in bite sized pieces and don't think about tomorrow. Stay Strong and Stay Here 👍x

[Ellie]

Hi Sue,

The unpredictable nature of MNDs is certainly not helpful to us. I had counselling and found it very beneficial in getting my head around my diagnosis and prognosis, so I hope your appointment comes up soon. Check if your local hospice offers counselling and get a referral to avail of all their services (usual offerings are physio, OT, nursing, complementary therapy, counselling, social worker)

Sometimes just when we think we’re on top of an issue, our ability changes and we find ourselves back at square 1, despite our best efforts to stay one step ahead of our progression… PMA tends to have a slower progression than ALS - though not slow enough, obvs - so, in theory at least, ‘planning ahead’ should be kind of easier, and also easier if you have a good OT.

Some people want to look ahead and know what to expect, others don’t - there is no right way or wrong way, just whatever you’re most comfortable with.

Take care, Sue.

Love Ellie.

[Ellie]

I don't know if you read the MNDA's info sheet on PMA, if not, here it is: https://www.mndassociation.org/app/u...ar-atrophy.pdf

[SueM]

I don't know if you read the MNDA's info sheet on PMA, if not, here it is: https://www.mndassociation.org/app/u...ar-atrophy.pdf

Hi Ellie,
yes thank you I had seen that and it was probably one of the first bits of info we found.
Love Sue x

[SueM]

Hi Sue, I remember the first time I realized I had MND and it was devastating. Now a year later I just take each day in bite sized pieces and don't think about tomorrow. Stay Strong and Stay Here 👍x

Hi Matthew
I still haven’t quite got my head around it, when I was given the diagnosis, yes I was stunned, but also I think I knew deep down so it wasn’t a complete surprise.
As I said to my consultant I’m trying to understand the never getting better bit.
Take care
Love Sue x

[GaryM]

Hi Sue. I'm not sure we cope, we just deal with each hurdle as best we can. My wife gets very stressed thinking that she won't be able to look after me as I deteriorate. But we get through each day with laughter, love, frustration and a bit of swearing. The worst thing is that we all tend to take out our frustration on the person closest to us.

[Shaun]

Hello Sue,
my diagnosis day was a complete surprise, (Nov 2019), well had a little hunch based on the nerve conductive test, I was told slow progression 5-10years here’s a prescription for riluzole, then spent an hour in the queue of the hospital pharmacy, quite surreal really, and extremely numb.
You asked How do we cope, we are all different and behave in different ways, but I think we all go through the initial shock and it is bloody scary but it will ease once you accept it.
I spent the first month trying to plan everything and cost everything up. Read lots of scary things, it got quite depressing, then my wife put it into perspective ‘ you’re not dead yet and the bins need doing ‘
She was right.
If you are on a slow track my advice is don’t rush, I deal with it as it happens, help will be on hand, maybe a little slow, but it is there and you can ask on here and somebody will be able to point you in the right direction,

If your care professionals asks you how you are tell them, even if you think it has nothing to do with this illness,

s.

[Banned]

Hi Sue,

The reality that we ALL don't want to admit to is that we are mortal. Spin fate on its head and imagine if you had a heart attack. There would be no chance of telling your loved ones how much you love them, no chance to go on your holiday of a lifetime etc.

[matthew55]

We're off to see the wizard...... 😃😃😃

[Shaun]

The reality that we ALL don't want to admit to is that we are mortal. Spin fate on its head and imagine if you had a heart attack. There would be no chance of telling your loved ones how much you love them, no chance to go on your holiday of a lifetime etc.

Have to agree with you Graham but would rather of had a massive heart attack and get done quickly,

[SueM]

Thank you everyone for your responses, the last two weeks had been a bit overwhelming. I had waited a very long time for the diagnosis, not helped by Covid, and then all of a sudden after seeing the specialist I was being visited by the outreach nurse, social services were phoning me up and last week I had an appointment at the MDT clinic, thankfully that was by video link. It was all too much really. The MDT went on for some time, the last part was with the consultant and nurse, by which time I was loosing the will to live!

[Ellie]

SueM Yep, I think we can all identify with the long, long, long MDT appointments, but the video version doesn't even allow for people watching, so must be even more boring 🥱🥱

[GaryM]

I found the same, SueM . Not much contact from health professionals until MND confirmed and then it's like a tidal wave of support all within a week or so. Good but tiring. It eases off after a while.