First visit from the mnd nurse

[Stevedp]

Having met the consultant the other week and being told I provisionally have limb onset ALS, his nurse Caroline is attending my address today. Is there any questions people feel they should have asked that slipped by talking to the Mnd staff? Me and my partner have various issues and questions to ask about and we may miss issues to talk about while we have the chance. All the best for now Steve

[WheelsOfSteel]

Sorry to hear about your diagnosis
You will probably find you have a series of initial appointments with the various medical branches who will look after you going forward, occupational therapists, dieticians, wheelchair services etc. In my experience my (lovely) MND nurse acts as the central contact point who ensures all the others are doing what they should.
An MND specialist nurse should have a lot of information for you.

[Stevedp]

Thanks Eddie

[Tony]

Hi Steve , sorry you find yourself here. It’s not a great place to be but there is help and advice available.

If you are in the West Midlands I think we have the same nurse. She will have a lot of information for you and is very patient. Knowing your Social Services contact and other help providers is important. She will be able to contact her by email if necessary afterwards.

All the best to you

[Arcadian]

Sorry to read this, I have the same diagnostic situation in the north-west.
Got my third Neurologist appointment in 2 weeks, so have also started to shortlist practical questions for then.
Outside of the branch MNDA (who have been helpful), I'm not at present particularly confident of support resources or symptoms progression monitoring through medical professionals for my region though, if the last 6 to 12 months are an example.
(Other folk in other threads further down the diagnostic / symptoms pathway, highlight the 'variations' in medical professional interfaces across UK regions).

[Ellie]

Stevedp How did it go Steve? xx

[Deb]

A warm ( literally !) Welcome to the forum from me Stevedp.

I hope it went well today. My MND nurse is my first contact if I'm concerned about anything and she has got to know me really well. Xx

[Stevedp]

Hi everyone thanks for your support and advice. Caroline Davis came out from QE hospital and took time to explain quite a fair amount of information regarding my mnd. She answered the questions myself and Maggie asked and told us about the various departments who would form the basis of my care team. She asked how we were coping with all that was going on, told us about the various tests that are going to be organised in the near future. I'm to watch out for any swallowing problems or voice issues and also sleeping problems. But she advised us that each person with this diagnosis presents their own way. Got to thinking this morning now what? Should we go to the support groups? Carry on as normally as we can, it's alot to think about while Maggie's at work. Got through to the DVLA this morning to inform them of the diagnosis, will be filling in the paperwork when it gets sent here. Can't switch off as there's loads to be getting on with. Lots going on. I'm feeling a bit numb today cause I just want to pick the good bits out of it all, not that there's much. The last thing Caroline said was we're here to help you don't be afraid to pick up the phone and talk to us, not used to receiving help more used to helping others so that threw me a bit. Me and Maggie had a quick cuddle and chat after they had left. Gonna take one day at a time and crack on with living.

[WheelsOfSteel]

Gonna take one day at a time and crack on with living.

Yep, that's the best way to deal with it.

[AngieCanuck]

Stevedp You have an amazing attitude, and that’s more than half the battle. Sounds like you’ve got a great support system 👍❤️ My advice is never take things more than 2 days at a time, try to enjoy what you can and keep laughing/smiling (while you can 🙃☺️).
I also recommend Tiny Lady’s ice cream diet 🍨.

[Ellie]

Gonna take one day at a time and crack on with living.

Yup, agree too 👍👍

Get out and enjoy life with Maggie xx

[JamesW]

Well said Steve. Stay positive and focus on living….. I’ve always maintained that this shitty disease is as much a mental battle as a physical one and that attitude will make the journey so much better ❤️

James

[Olivia H]

Stevedp It takes a bit of time and everyone's rate of progression can be very different, but you will reach a point of waking up and not immediately having that sense of mnd panic dominating your thoughts. Live the life you now have, the fullest way you can. Adapt and survive x

[TinyLady]

Stevedp - glad you had a useful visit from your MND nurse today and that although an overwhelming amount of information to take on board, at least you are building the support network around you. Please do reach out to them for help if needed.
You sound like a positive person and I'm sure you will find a way to live your best life. But can I just recommend eating ice cream? As AngieCanuck suggested....

[Stevedp]

What's with the ice cream? 🍦🤔😄