Hi Scudger, I know fatigue is your biggest PPMS problem for now, a break from the many other symptoms. Caring for your wife with dementia, giving you no time to dwell on your own problems, is pure altruism!
MS Nurse Appt. the main topic. If you have a good relationship with MS nurse, when she greets you & asks how you are, maybe say “fed up doesn’t cover it” She’ll ask why & how and you could say “there’s good, bad & indifferent news which I feel is spiralling out of contol” Say “I’ll briefly mention the problems I deal with every day and night for Dee but obviously need the main focus on myself”. Ask her to make sure you stick to the time allowed with no more than 10% given to Dee. Maybe take a list of all you want to cover. Perhaps discuss local support groups that you could attend, any subject you’re interested in, meeting other people. Inform her of how you feel exhausted.
As Loulla said earlier, can you attend Dee’s appointments & explain your difficulties to see what practical options you have?
Good luck on Tuesday.
Anne, I doubt you’ve read of any PIP benefit being reduced or stopped in cases of confirmed PPMS. It’s quite rare & creates permanent damage without any treatment to cure, slow down or even stop the progression. Any relief is temporary but invisible damage continues.