Neurology annual review

The thing is that what you are going through is unique to you, it doesn’t matter what anyone else has gone through before.

Your experience is valid and if it makes you feel sad then that is equally valid, no need to apologise for it because you think someone else has got it worse. People used to tell me that as bad as my situation was there was always someone else worse off, but really they were just trying to make themselves feel better about my pain.

I believe that accepting your situation is important. There are milestones along the road for all of us but they only apply to the living. I take a lot of comfort from the fact that I am still alive to mark those milestones because we are all, able and disabled, heading in the same direction ultimately, and life is a ride that we should all make the most of.

ranald

Pre Car I used to get patient transport to all my Hospital Appointments, Used to have to book via GP but think you book it now via the clinic when you make future appointments.

aww well, soon youll have your sporty golf and wont have to worry about braving the bus. just the parking

I had my 6 monthly review last week. I always find my neuro doc and MD care nurse really helpfull. Its my neuro that organises and coordinates any treatment I need.

Please don’t stress yourself when comparing your present state to those of other sufferers. Every one is uniquely individual, not only in what stage they are at with their particular MD but also in how they deal and cope with it.

You are experiencing some ‘first-times’ that are understandably concerning, even depressing. You have the right to feel how you feel. Soon you’ll have the wheels to give you more mobility.

So I had my neurology annual review yesterday and came away feeling rather rude but I have basically told the unfortunate doc that I find this annual event to be unhelpful as all they do is rub my nose in my disability which isn’t very emotionally fun and achieves nothing as there is nothing they can do. I just wondered if others feel the same and also whether there is anyone who has stopped bothering with annual reviews? I am not trying to say that regular review with a neurologist is no use but I do wonder if there are better ways it could be done, whether it could be less often (appointment systems don’t seem able to cope with appointments less frequent than annual but surely if there was enough demand this might be possible) or be in some way more responsive to what people need when they need it. Personally I am on ventilation so see a respiratory team and I am also in the highly priviliged position of having access to regular physio via the neuromuscular centre in Winsford so the neurologist adds little. I must make clear that I am enormously grateful for all the excellent care I have received via the NHS and also the NMC but I would be interested in others’ thoughts.

Elizabeth