My mum’s diagnosis of RRMS was changed to PPMS on Thursday. I think everyone apart from mum had suspected PPMS due to age of onset and symptoms but it was still a shock. She is pleased that she does not have to worry about any new relapses, though.
The last year has been quite difficult for her and 12 month after initial diagnosis her neurologist said there was a clear decline in her neurological examination. I am TERRIFIED that this will progress quickly.
She experiences severe pain after walking for 30 mins or so, and the GP has been really unhelpful prescribing a painkiller that she can use when she experiences this pain.
I am taking her to Disneyland Paris at the end of next month with the rest of the family, to give her something to look forward to. I am really concerned as I think it’s going to be really hot / lots of walking involved. I have read that she should keep out of the sun as much as possible as it may make the MS worse? how true is that.
Have any of you got any tips to make this trip easier on her? It seemed less daunting with RRMS.
Thank you all so much, you’re all great here.