New to M

[fortuna]

Lesley j
You and my daughter must be going through all the same stuff. I feel so bad that she is having to do so much for me. Take phone calls I can't ring to make or cancel an appintment. Ring to get the b. Zimmer frame collected. (It is huge and is no good in a small flat.) So many things and now the peg thing. Has your mum had that done? I am wobbly on my legs but still able to walk.

[LesleyJ]

Hi Jill, sorry to hear you are a new member to this group. My Mam who is 76 was diagnosed with bulbar in November last year so if you have any questions just let me know or send me a private message. xx

[Heather R]

Thanks Ellie x

[Ellie]

Yes Heather, you can stop using a feeding tube at any time or you may wish not to get one at all, that's your choice entirely.

You can do an ADRT at any stage and you can change it at any time - it's not written in stone.

Love Ellie.

[Heather R]

Thanks for the advice, I had wondered about those. I suppose you then always have the option not to use them...... At what stage did you do your ADR what's it?

[matthew55]

I heartily agree a feeding tube is a gateway to happiness. Even when it breaks. 😀x

[Ellie]

Heather R If you were to opt for a feeding tube, that would take the stress out of eating, drinking and choking.

Love Ellie.

[matthew55]

Hey Heather, I'm almost exactly the same as you. I had a gene test done and got the happy news that I have a duff gene that my dear departed mother bequeathed me. Happy Days! 😀x

[Heather R]

Hi Jill
I am 73 and this is my first day to really look at the forum and write on it, it seems I have been so busy with appointments and thinking about moving to a more accessible home. I also first noticed my voice affected about the same time as you, had the throat camera looking for cancer, then referred by SLT to neurology which was a bit of a wait because of COVID. Then straight away admitted to hospital for 4 days having all the tests at once, and diagnosis of ALS bulbar onset, with my hands now affected. Like you when I can be philosophical about it, I think something was bound to go wrong sooner or later (and I already have COPD). But this diagnosis is pretty daunting, especially as my voice gets worse. I don't know anyone with mnd, so it's great to meet you all. At the moment the OT and person from adaptation team think my house is pretty unadaptable to a wheelchair, but I can't help wondering if my choking will cause pneumonia etc before my legs completely give out, but all a mystery I suppose.

[Ellie]

Jill, my local hospice does art therapy - although it didn't appeal to me, maybe your local hospice offers it?

Actually, if you aren't already linked into a hospice, it's well worth doing. They are great places and offer support in many areas. Some accept self-referrals but most need a referral by your GP, Nurse or other health professional.

Love Ellie.

[Barry52]

Hello and welcome Jill.

You will find friendship and support from this group. We have a no falls rule here but occasionally someone breaks this. Let it not be you.

Best wishes.
Barry

[fortuna]

Thank you all for your replies upbeat and cheerful. Ellie thanks for the advice abt my heavy head. Will do.
I paint but since this illness has been on the cards Icarve lost the urge. I ws hoping that once diagnosed my art would come back it hasn't!
instead I am spending my time putting my house in order My wardrobe for example about 25 items removed and sent to charity shops. 3 chest of drawers 2 bags of stuff removed!
!Now for the living room

[miranda]

Welcome jill from another one in her seventies who too feels I’ve had a life well lived but with a few glitches on the way.. the team at JR are fantastic so you are in good hands

[Doug Carpenter]

Hi Jill

Welcome to this splendidly supportive Forum.

You will be very very well looked after at the JR. Profs Talbot and Turner and their colleagues are a marvellous team.

I share your view about age of onset.

Hugs
Doug

[Ellie]

Hi Jill and sorry you've had to join our Band of Brothers (& sisters)

Ask your OT (occupational therapist) for a collar/neck support to help keep your head upright and stop your shoulders and neck from getting sore.

MND is a tough one to get at any age but I'm glad you feel you've lived a full life. I had to smile when you said you hoped it wasn't cancer 😏 there are good odds these days that one's cancer can be cured, unlike MND.

Take care and please don't fall, especially not with your RA...

Love Ellie.