Hi, I am trying to get my head around the possible long term cognitive symptoms which can result from PPMS. Is anyone able to describe how their cognitive symptoms have been five years and ten years on from diagnosis? Also has anyone been told by their neurologist that their MS is stable? How long did the stability last? Thanks in advance for your help, I have a close member of my family who has recently been diagnosed with PPMS. I have read a lot of factual information but I have found that it is one thing reading factual info and another hearing about a person’s life experience of dealing with symptoms. Thanks again.
I’ve only been diagnosed for six years but my cognition is impaired. I was a nurse and reasonably intelligent. My memory is awful. It was initially only my short term memory affected, I’d forget to take my tablets, or take them and forgotten I’d had them and a few times I took them too often, fortunately I recovered. I spoke to my pharmacist who now puts my tablets in a blister pack so I can see at a glance what I have or haven’t had. There are ways of coping.
My calendar and phone are life savers so I don’t forget appointments, I have an Amazon echo which reminds me to put bins out, take tablets, remember shopping lists etc. I keep all my important information in files on my mobile phone as I now forget what meds I’m on, my allergies and many other things. I forgot how old I was on my last hospital admission and even though I remembered my date of birth I couldn’t work my age out.
It was very humbling to be classed as confused. Last week I couldn’t remember my address and had to find some post to remind me. It can be very frustrating, isolating and humiliating. You learn of ways to cope, like sitting watching the bath run so you don’t flood the house, setting loud timers when you put anything in the oven and having a pen and paper nearby to take notes if someone phones or friends invite you out becomes routine.
I know how my cognition affects me, so in order to remain safe living on many own I take that as seriously as I do my physical limitations. I hope this helps slightly.
Huge apologies for my delayed reply. Thank you so much for your very helpful post. I am sorry to hear how it has affected you but inspired by the amazing strategies that you have put in place. Thank you so much for sharing, this has helped a lot. Take good care.