saying hello. Bit lost.

[Boden1986]

Yes coronavirus. X

[benaldo]

Oh yeah of course, sorry I forgot there for a second about the dreaded invisible enemy. It is tough as the child, I understand well how you must be feeling. Please reach out if you want to talk.

thank you so much.
What do you mean the dreaded invisible enemy? Coronavirus?!

[Boden1986]

Oh yeah of course, sorry I forgot there for a second about the dreaded invisible enemy. It is tough as the child, I understand well how you must be feeling. Please reach out if you want to talk.

[benaldo]

Hi Benaldo, my dad was diagnosed early January.
I struggle still with what to do etc.
With dad most appointments just fell in to place as the consultant and mnd nurse will refer to things such as the SALT team ( speech and language therapy). Mnd association are always great to connect with. Loros hospice have been amazing with dad too so they are a good contact to have. Try not to get over whelmed to easy though it's hard to not get swept away with it all.
I really hope you are all ok xxx

you're really kind, thank you. My dad's been told (by specialist) to maybe stay away from local MND association and meetups for now, because he'll see people in a condition that may unsettle him, and that he should wait. I think he's getting to grips with what needs to be done, but not fully. He's done his LPA. I think the coronavirus shut down will focus his mind!

[Boden1986]

Hi Benaldo, my dad was diagnosed early January.
I struggle still with what to do etc.
With dad most appointments just fell in to place as the consultant and mnd nurse will refer to things such as the SALT team ( speech and language therapy). Mnd association are always great to connect with. Loros hospice have been amazing with dad too so they are a good contact to have. Try not to get over whelmed to easy though it's hard to not get swept away with it all.
I really hope you are all ok xxx

[Terry]

Hi Bx,

Maybe talk to him and his doctor to see if drugs will help. Just because you have them doesn't mean you have to continue to take them..

I doubt that it is is much too do with Mnd.

Love Terry

[benaldo]

Mnd can affect the brains ability to control emotions and along with this, in a few of this cases it can make people aggressive. I doubt that your dad will have problems like these if it has not happened yet.

Frustration and being newly diagnosed does take it's toll.

Good to hear his thinking and talking about things.

Love Terry

Ah yeah, thanks Terry. I think he's been struggling to control aggressive emotions for quite a few years, to be honest. I'm assuming that's not directly connected.

I really feel for him, and I think his next best step is counselling, in part to give his partner/carer a bit more emotional space and support. She can't really make the space to talk to people about her side of things at the moment - she's very restricted.

Thank you for your kind and supportive candour Terry and everyone.

BX

[nunhead_man]

Good morning Benaldo

Welcome to the forum from me this and it looks likes you're managing well

One comment on the driving stuff is that you need to tell the DVLA about your disease and they will probably issue a three year licence?

Also I swapped from manual car to an automatic one (actually a PHEV) when I had trouble with the handbrake - the new motor is all pushbutton which I can manage with my existing level of disability

I will have to stop driving though when I lose my grip as I won't be able to turn the steering wheel

[benaldo]

Great news everyone is that we've had a good chat with dad, and he's probably more on top of things than we'd thouhgt. It's hard because he's obviously also coping with it all, trying to stay positive. And I don't think he realises how worried those of us around him are about whether the things he needs sorting are getting sorted.

[Terry]

hi Terry - he doesn't, no. Why do you ask?
We've been talking about cannabis, and had a good chat last night where he revealed he's progressing more things than I'd realised. So, some hope.
B

Mnd can affect the brains ability to control emotions and along with this, in a few of this cases it can make people aggressive. I doubt that your dad will have problems like these if it has not happened yet.

Frustration and being newly diagnosed does take it's toll.

Good to hear his thinking and talking about things.

Love Terry

[benaldo]

Hi B, welcome to forums. I’m sorry about your dad’s diagnosis. As Ellie said hospices are good. One thing that I always mention to newbies is voice banking. If you put that into the search box posts will come up about this. Lynne

Thank you Lynne. He/we have been looking at voice banking, yes. Best wishes. B

[benaldo]

hi Terry - he doesn't, no. Why do you ask?
We've been talking about cannabis, and had a good chat last night where he revealed he's progressing more things than I'd realised. So, some hope.
B

[Lynne K]

Hi B, welcome to forums. I’m sorry about your dad’s diagnosis. As Ellie said hospices are good. One thing that I always mention to newbies is voice banking. If you put that into the search box posts will come up about this. Lynne

[Terry]

Hi B,

Does he laugh or cry uncontrollable or inappropriately?

Firstly he has to sort himself out because it will be hard to get him to do anything if not. Many of us take Antidepressants, sometimes for different reasons.

Your list seems quite comprehensive but don't try to do everything at once.

Love Terry

[benaldo]

Thank you Terry and Ellie for your further replies.

I'm trying to understand what needs to be sorted for/with him, even at what he thinks is an early stage. My sister's getting her head round lots of things. Mine is a bit in the sand. I've found advice on various websites, including MND association. But do you know of a list of 'stuff you should sort soon after your diagnosis' type thing? I'm thinking -

- counselling (via GP, but this is only 6 sessions, so look at private too) - for dad, his partner, and any of us! But mostly dad, because he's depressed and in some denial and getting quite cross, which is making life v difficult for those most close to him, those he needs the most.
- care assessment
- lasting power of attorney
- connect with local MND association (their next meeting is end of March - I'll try and go with dad if he's up for it)
- hospital clinic appointments with specialist (next is months away I think)
- sign up for research trial (just cos this was suggested by dad's specialist and he seems willing
- voice banking
- car adjustments (his left hand has very weak grip and he's reaching around with his right to indicate and put the handbrake on...)
- home upgrades for accessibility
- speech/swallowing therapist
- create a continuous healthcare plan

What do you think? Is there other stuff I/we should get on top of?

many thanks everyone. Bx