Hello MND connect
Background summary: diagnosed Nov 2019, ALS flail limb (2 years undiagnosed). Slow progression
No immediate concerns, carrying on pretty normally, still working.
Have seen consultant twice, Nov for the news we all don't want hear and a 2nd last week for blood results (riluzole) and respiratory (all good) , so as I say no immediate concerns and it's slow progression.
So I have had a couple of months to get used to it, (almost accepting it) and have read through the mnda book and web pages.
The thing that I am lost on is the support mechanism; there is a lot of talk about specialist nurses, specialist centres, OTs etc. And how they can help on this journey
What happens when your health authority does not have a specialist nurse or the OT isn't required, (is that hospital or council ?). And your GP s advice is to get an emergency appointment if I get a temperature or if I need time of work he will give me a sick note.
As I say I'm low maintenance and the moment 1 hand only half of it working, shoulder means cant lift fully and one leg works only when it wants to. Who do I ask for help when it gets harder what should I expect my GP to sort out. Because at the moment he is as much use to me as a vegan at BBQ , at my last appointment he reminded we that we had run over time by 3 mins, and had to cut me short.
Thanks for any advice
Regarding local support trying to get there but I am still working and haven't been able to get the one meeting held, there is one this month which I will try to go, so thought I would ask on here in case I dont