Why are the MS cognitive issues so hard to describe! Do u get any? Also u know when your memory is rubbish its hard to get help because you forget what you are forgeting don’t you?
We cannot win with this one.
If you aren’t as bright as you used to be, people pay no attention because you are still brighter than most. If you are even dimmer than you used to be, people pay no attention because they never expected you to be smart and they still don’t. In either case, when you get to a certain age, people assume that’s what the problem is.
And even if you do crack it and find the right words to describe, there’s naff all to be done about it. Except maybe light a ‘Hamlet’ or something.
Whenever I see my neuro or MS nurse, I seldom mention cognitive issues. Most of the time I don’t think of it because the focus always seems to be on physical symptoms. I didn’t think it was a problem until I had to apply for PIP recently. That’s when I found that I should have told someone about the feelings of stress and anxiety I experience when travelling to somewhere unfamiliar. Which eejit decided to make the mobility component dependent on mental health as much as physical ability?
As for lighting up a ‘Hamlet’, other Shakespearean characters are available, or are you thinking about setting fire to a small village? (Yes, I do remember the cigar ads.)
I recognise that problem - forgetting that you have forgotten
On a few occasions (with work etc) I have provided a copy of this - or used it to remind me about things I can’t remember!
Your reply really struck a cord with me. I had a cognitive assessment done last year as I told my neuro that I was still having cognitive problems, as I have since diagnosis 10 years ago. The results were that yes you seem to struggle with short term memory, that hasn’t changed since the last assessment but, nothing too bad. The assessment did show that I was very intelligent, in fact top 95% of the population. The Psychologist seemed to have the opinion that, yes I’ve got memory issues but I’m very clever so what am I worried about!!! In fact he kept just saying yes but it shows that you’re very intelligent!
My response was yeah I know that but, it doesn’t help me when I get stuck in my head that I need to buy coffee when I go to the shop, then come home to find that I bought coffee on the 5 previous visits to the shop. Or when I’m having a conversation and suddenly drop the word elephant into conversation, not even realising I’ve done it until I notice the puzzled look on the face of the person I’m talking to. Never mind all the other little brain fart quirks that we put up with and manage to cover up as we go about our daily lives!!
Interestingly enough its my emotional issues and anxiety that affect my mobility the most I suppose in some respects. Ok I can still walk, BUT I have loads of barriers in my head to want to go out.
Fear of falling
Fear of being lost
Fear of breaking down in my scooter
Fear of forgetting where I am or why I am where I am.
Fear of being so exhausted after going out that I will spend the rest of 3 days getting over it.
I also have Transient Epileptic Amnesia so i have a double whammy where memory is concerned. Its either my MS FOG, or my TEA giving me short term total memory loss lol.
I never go out on my own now to the shops or the town, i want to so much, but i am too scared, and anxious. I would rather just stay at home and chill out then face going out on my own. I will pop over to the park as its right opposite my house, with my dog on my scooter, but i never go unless my husband is at home, and i take my phone with me.
How the hell did i get this way? Jeez i used to run 54 tutors, driver all over a city to 11 different learning satellite centres, and now i am scared to go to my local shops how stupid is that.
UGH bangs head on table, i might as well not have legs, as i am convinced its my brain who is winning this war lol.
Your post struck a chord with me, the massive mental effort involved in NOT falling is incredibly tiring. The extra fears involved in doing “regular / normal” stuff are flipping annoying. For me the fear of not doing stuff is a tiny bit bigger than the fears involved in doing stuff, however it is a close run thing and I have had to shift the goalposts (yet again) related to my public outings.
I also keep the phone close to hand and I now have a “community link” alarm bracelet which ensures that I have an option to contact help, should I have a serious problem whilst at home. This enables me to do things on my own that otherwise I would probably avoid.
There are some coping strategies but no total solutions.
Thank u so much
I’ve just forwarded this thread to my husband! Ten minutes ago I had a conversation with him where I explained that I feel he gets a bit impatient with me when I don’t ‘process’ something straight away! He was very apologetic (I’m lucky, he’s the best) Just to show him that it isn’t just me…
It’s very frustrating - I really feel the difference between now and the way I was just over two years ago, when I began to notice the problems that led to the MS dx. And I do consider myself pretty intelligent - it’s just that my thinking gets a bit muddied (if you understand what I mean.)