1st consultation post diagnosis. 🤔

[LindaB]

Had a virtual meeting with my MND consultant. I say virtual....the technology on their side didn't work so ended up just using the phone.
My 1st thought was what questions do I need to ask🤔 I wasn't well prepared. I asked about staging...prognosis...and genetic testing. I'm sure as time and mnd progresses I will have more. I'll jot questions down from now on as I think of them.
He mentioned again peg feed as I had said no no no on the day of diagnosis.. He recommended a YouTube link to look at. Not sure...but stored the info.
It felt somewhat surreal to be talking DNAR and end of life in the context of myself. I've discussed these issues many times with others throughout my career..now it's my turn. Of course the consultant doesn't realise I'd planned to live forever.
I suppose in summary I was left thinking (as I'm sure is standard) there is no 'one size fits all' progression...prognosis so varied. Even though all roads eventually lead to the same place.
There will be progression that's a given and what my views are now will I'm sure change...I'm thinking it's probably useful to keep a journal. Anyway just my musings and ramblings - sharing is caring ❤❤

[matthew55]

My Grandfather made it to 100 and I remember asking him if he was happy. His reply. 'all of my friends and people I have known are dead. I have nothing in common with this world' Maybe we are better off dying young. 😉🤗😍😘xx

[Ellie]

LindaB It's a shame your clinic hasn't reinstated in-person appointments, especially for newbies such as yourself, Linda.

Don't feel pressure to get a feeding tube - it's one thing if your swallow, breathing or hand function is affected, but if somebody is a slow progressor or non-ALS and has none of the above issues, honestly, it's hard to even imagine the benefits of a feeding tube if mentioned too early.

That said, if a feeding tube is on the cards, it should fitted long before it becomes a crisis intervention. xx

[LindaB]

matthew55 I've chatted to a lot of very 'old' people who say the same. Friends and family have gone etc.
I'm grateful I've got to my age when others die really far too young. I had hoped for maybe 70.....but who knows. For now I'm alive and kicking....in a weak - limping - speech slurring kinda way 😂😂

[LindaB]

Ellie I asked about his view of my progression...he felt not slow but not fast either...it did feel a bit like guess work...I'm not doubting the man's knowledge and I suppose as with all progressive disease it's hard to be definite. Human beings....we're a weird lot and unpredictable.
I felt strangely calm about it all....which is unusual for me being a drama queen 👸
😘

[John D]

Don’t dismiss the idea of a PEG Linda. Keep it in mind. I waited 2 years before being persuaded it was the right time as my swallow became more difficult. I am using it for nutritional supplements and I find it really useful for making sure I am taking enough water onboard.

[matthew55]

I had a PEG fitted before I needed it and now I couldn't be without it. My views on extending my life are well documented but lack of certain things lead to Hospital visits. I rather a big bottle of feed personally! 😁😀🤗😍xx

[bromleycross]

Very similar experience started to trip/fall in March 2020, provisional diagnosis in Dec 2020 , diagnosis confirmed in March 2021.
Followed by 2nd respiratory disease in April 2021 - I asked what happens at 3rd stage but there isn’t one !!
Option of NIV not very keen but 10 weeks life expectancy without or 10 months with was a no brainier and it’s not too bad as only wear it at night.
Conversations with professionals about end of life care have been vague which I understand but really need to know what I am facing when NIV at my request is switched off I have contacted Dignitas for information only because I want a quick painless end.
I had a PEG done just in case but fortunately can still eat and drink a bit messy at times but wine still goes down and not a drop is split 😁
I am a bit like a swan gliding along but paddling like crazy to stay afloat

[Ellie]

... but really need to know what I am facing when NIV at my request is switched off

Your palliative care nurse/consultant will happily have that chat with you. If you aren't already linked in with them, your GP/nurse can refer you - many are hospice-based, so check out your local hospice online, if you're not familar with their services and referral procedure.

I've had various conversations with my palliative care nurses and know that I won't have any pain or air hunger (I'll have meds delivered through a syringe driver) when NIV is no longer a useful, or a wanted, intervention for me.

Love Ellie.

[Mary C]

Hi,
I can only say that when I was first diagnosed 13 months ago I felt is was important to know my options for end of life care but knew I would prefer to have palliative care at home or if necessary then at the hospice.
I have grown in confidence that the palliative care team in the community and from the hospice will ensure via medication that I will be kept comfortable.

Like Ellie said if I use the NIV at night and then become reliant on it 24 hrs then I have explored what support would be given to me if I choose to discontinue using it.The palliative team explained how I would be supported with medication until I reach the end of life.

After not wanting a PEG and lots of discussion I saw the value of having it in place for supplements when needed, extra fluids and for delivery of medication if I develop a swallowing problem.In fact just had the RIG fitted 2 weeks ago although not using it yet.
The respiratory team suggested I consider the PEG/RIG whilst breathing still reasonable.

It’s useful if you have a hospice team or community palliative care team that support you as my experience has been to build confidence in the team to explore my options and update my respect / DNR.
I keep a journal..not daily but as I want to record in it.I look back and realise how I have learnt to adapt to the various changes so far.
This forum continues to be a great source of support as let’s face it as we have MND or are carers, partners spouses we live the experience daily.Always good if we can support someone on here or receive support.
Best wishes
Mary

[LindaB]

Mary C Referral to my nearest hospice is on my to do list - appointment to speak to GP. I think it's absolutely right to plan a 'good death'. Home for me too unless hospice needed. I imagine hospice probably feels very reassuring at end of life. I intend to use whatever complimentary therapies are on offer too as soon as I can.
Thanks all for the comments and tips....you're amazing 😘

[Olivia H]

LindaB it is very much a personal choice, there is a lot of wisdom here but also difficult as everyone has very different experiences. In my own case, I was almost identical to you, a short period of unexplained falls, limping of left leg, leg cramps...within a couple of months could hardly walk the length of my road. Peg not mentioned by mnd clinic however. I think my initial consultant felt my walking loss was pretty fast. But, that was well over 9 years ago, I use a mobility scooter still. So it can be really hard to know what is in store individually. The one thing my original consultant told me, which has stuck in my mind, is that in her experience, people who remained positive did better. I wasn't at all positive at first but it has hauled me along subsequently. I now have an unrelated health issue to deal with, so trying to apply this again. Keep mentally strong x

[LindaB]

Olivia H thanks that's a positive account. Is it lower limbs only for you & how is your speech...9 years that's great and hopeful. Yes that's the thing with this MND such varying progression.
Sorry to hear another health issue to deal with...you sound as though you have a handle on it though- at least emotionally👍
For me I want to sort out all the death & dying stuff....park it...live for each day. That's the plan....😘

[Ellie]

For me I want to sort out all the death & dying stuff....park it...live for each day.

That's what I did very early on, Linda - it's strangely liberating 👍👍 😘

[Olivia H]

LindaB yes lower legs and core balance. Leg weakness; footdrop in one foot, useless big toe in other. Everything else pretty good, including voice. Like most people with this, get tired sometimes but think that's just that doing things takes more effort when your legs don't work properly. Hope you continue to stay strong x