Hi everyone! I was just reading Terry's (saveone) newest post about her neuropsych exam along with everyone's comments. I think it was Quix that said after losing our other abilities such as getting around and other obvious physical deficits that this is a big blow.
I am fortunate to still be getting around and doing most things with out help (no cane etc.) My biggest problems are cognitive issues and pain.
My mother-in-law is in a nursing home with MS and we have a couple friends that you can tell just by looking that their MS has gotten worse.
Here is my question - Does anyone find it more frustrating because friends or family think we aren't doing bad just because we can still walk?
My family seems to think like that - of course one of my deficits is perception - I am told that I "read" people wrong.
Any advice or stories to share would be greatly appreciated.
Thanks - Erin
I'm undx, so as most people percieve, there is really nothing wrong with me. Especially since my MRI of the brain came out clear with no lesions. Even though my family see me unable to get up from the couch, walk, talk, see at times, think. Still there must not be anything wrong with me.
I do have trouble with walking, but have not purchased a cane yet. I think it would be helpful sometime, but just haven't wanted to go there yet. I guess for me it would be admitting how bad my legs have really become.
My biggest heartbreak in all this is the toll it's taking on my brain. I was always a multitasker, reading 2 or 3 books at one time. Running a business, being creative, etc.
Now I forget from one minute to the next, get overwhelmed just doing one thing at a time, don't retain info, takes me forever just to read one book now, lost my conversational abilities, can't cope in crowds, even hard to cook when using new recipes, emotions jump from anxious to angry to depressed to just not caring.
I guess any chronic illness effects everyone in a different way. Being dx, I'm sure doesn't make things any easier, for you.
I was diagnosed 13 years ago. I have been paralyzed 3 times and each time I have lost some of my abilities. I have severe cognitive problems and it is now starting to really interfere with my job and home life. The hardest thing for me has been having to deal with people saying," you look good, so must not really be sick".
I was told last week - you don't die from MS - I know that - you die from all the bad diseases it allows your body to contract. Two weeks ago a 24 year old female with MS died...so how do I make healthy people understand the complexity of this disease. I really am sick with multiple disease caused by having MS.....but I walk..not very good. I fall alot, run into things, so to them it's ok to laugh at me, but it's not ok. If I had a visible disorder you could see 24 hours a day they would most likely pity me, but that's NOT what I want.
People who are my friends and see me all day every day....see the disease.
So my biggest frustration is the lack of concern for people with "hidden disabilities" - but if you really know us the disease really isn't hidden at all.
Thanks for the response. This is why I posted this question. Like you, I am soo devastated at the loss of my cognitive functions. I used to read 3-4 books at a time and l loved multi-tasking. Now I can't do those things and I can't have intelligent conversations in person because I stutter, slur and take to long to respond.
I actually thought at one point that I would rather be the one in the wheel chair that still seems like the same person mentally that they used to be. At least they are still the "same" person "upstairs" that they used to be and people don't just think that they are drunk or goofy.
Thanks again for your response. Take care and know that you are not alone.
You sound close to my situation except when you say that you have been paralyzed 3 times. I had episodes where I tried to stand after sitting and can't move for several minutes because it's like my legs aren't there but never paralyzed.
I don't want PEOPLE PITY either. Just like you said I just want understanding. I know that the laughs and jokes aren't suppose to hurt but they do and not because I can't take a good joke but because it just reinforces that they don't get it and I don't know if they ever will unless I am in a wheel chair or worse. My neuropsychologist says that one of my brain problems is perception and that I shouldn't assume that I understand them I should ask them what they are thinking or feeling. Could you imagine on top of everything spending the day asking Are you feeling the way I think you are? Ha Ha then they would really laugh at us.
What I really want to know from you or anyone that can answer is are you more upset (having more difficulty)with the physical or cognitive losses?
Thanks for your response and take care
I am at the point right now with my ms that I have minor not so noticeable to others physical problems but the cog fog is popping up more regularly. My biggest concern is not the possibility of being physically disabled but being mentally impared. If I can think, I can still construct who I primarily am - I can do that sitting or standing. I try very hard not to dwell on where this disease is taking me but focus on the here and now. I know this doesn't answer your question well....
Take care, Lulu
For me the cognitive problems are the worst. Sometimes I think clearly, and other times I forget how to add and subtract. You can tell me something, and say repeat it back to me ....and I can't.
The physical problems are bad, especially when I get Bell's Palsy. That's extremely frustrating because my face is paralyzed and I drool and you can't understand what I'm saying. I have learned to expect pain everyday, so I when I don't have pain....I thank GOD. I still walk, not very well but I refuse to let this disease beat me. some people say," I'm stubborn", but the more I force myself to walk and do other things (I think) makes me heal quicker. My neuro says exercise helps keep down my tone (spasms).
If I had to choose between cognitive and physical problems....I would love to get rid of the cognitive problems. I have accepted the fact that I don't have much longer to walk, but I hate feeling like I'm becoming more and more stupid everyday. I have a professional career and the cognitive problems are effecting my work and I have been talked to about these problems by my supervisor. I 'm currently waiting to be admitted to the hospital in Feb 09, (I'm waiting to build up sick time) hopefully they will be able to find something to help with my memory problems.
For me, even though the cognitive problems are bad, I would still take them over the physical. I have been thinking about this all day because around 3:30 I realized I couldn't lift my right leg. That scared me, it is only the second time it has happened. It was then I thought I can deal with speaking slowly, saying the wtong thing, forgeting what I am doing or cannot remember how to do something I have done a thousnad times, or ebven to ed abole to type (I left this so you could see). I don't believe my cognitive problems will progress to the point I cannot function but I am afraid my physical symptoms will. I really don't want to not be able to walk, take a bath unassisted or dress myself etc. That is my biggest fear.
Don't get me wrong, the cognitive stuff is hard for me. I always depended upon my intellect. I enjoyed my intellect. I love deep discussions like religion, poilitics, our higher power however you define it. I can still do that just a little slower. I have to write notes so I can remember what I need to do and sometimes I forget even before I can get to my pad to write it down. Heck somtimes I have to post notes so I won't forget to take my notes with me. I have even on a bad day had to write a note and post it to remind me to dry my sweater.
I grieve for the person I was and I am struggling to accept the person I am becoming. Having the forum family makes it easier, because if it wasn't for them who would I talk to that understands, not says they do, but ppl who really do. So for me with all of my cognitive deficits, I still prefer them over the specter of losing my physical abilities...that is as long as I don't go totally bonkers.
I think I'd rather put up with mobility problems than cognitive difficulties. I've experienced both, and the cognitive problems scare me more. Besides, if I'm having trouble getting around, I can always paint, or play computer games, or read. If I'm having trouble thinking, I shouldn't be driving, walking around in a grocery store, or other activities, because they require my brain to be on.
I'm not diagnosed-yet, but hopefully I will be soon. I have the symptoms of all kinds of different diseases, like MS. Could severe pain in my right hip area be a symptom of MS? I've been wondering because the hip/appendicitis like pain is really the only symptom that doesn't quite seem to fit, and its the symptom that I experienced first, though now its not quite as bad...but I still can't walk and I don't know if its do to my "hip" thing or my muscle weakness or both..
Any advice is appreciated.
Tinners- can you go up to the top of this page and hit the green 'post a question' button and repost your question, instead of posting it here as a comment? I think you will get better responses that way! Welcome to the forum from "me" also!!
To all- I'm 21, and I've dealt with the mobility problems, used a wheel-chair to get around outside of my home so that I wouldn't miss any of the fun with friends and family, and have decided that I can handle mobility problems as long as my mind is fresh and I can laugh and smile. The only tough part is that whatever is happening is robbing me of my cog. ability... some days are very clear but those are fewer than they used to be now and as I've mentioned before I struggle with simple math, placing names, hearing things in a crowd, understanding the meaning of things, and short/long term memory is very bad now. This has been harder for me to accept than the fact that I can't run down the street... becuase I've just strapped myself into a wheelchair and rolled beside my friends as faster than they could walk. :)
Perhaps I'm just rambling, but then, I was trying to really think about your question, Erin, and I can't stand the thought of how fast my marbles are leaving and I would trade my the rest of my mobility any day... just take it and give me back what I've lost.. please...
Thanks for replying
I know I can post a question and all that jazz but then I'd have to explain ALL my symptoms..which I've done in other forums and this one, but that was awhile ago. :-)
I'm seeing a neuro on thursday and hopefully he'll have some ideas..
Thank you again!
It is definitely the mobility problems that are the worst for me. Not so much because of the things I can no longer do like sailing. I can always find other things to do to replace those things I can't do any longer. It is mostly a fear of the unknown that makes the mobility problems so bad. I live alone and have no family around, so what will happen to me when I can no longer physically take care of myself? I can't call on my brother for help as he is 3000 miles away, plus already taking care of our mother. I also can't conceive of calling on my daughter either. She has enough problems to deal with already with her mothers failing health.
Thanks for your post. I am having a VERY bad period of cognitive function right now. I have the stumbles and constant bumping in to things and of course trouble writing and any small motor skills but I am not handling this huge decline in my brain / thought function. I have family members asking if I have been drinking etc.. I had my son compare me to his grandmother who is 100% crippled and asked me how come grandma doesn't seem slow or out of it. Ouch that hurt. I know that he wasn't saying he would rather have me in the nursing home but wow I thought that I was faking the family out with the degree of decline. Now I'm paranoid that everyone is watching and I am on display.
I have decided that I want my marbles back and give me the wheel chair to race my friends like you!
Thanks again - Take care & if anyone has extra marbles send them my way - I NEED THEM
Sorry to here of your situation and thanks for the post. I don't want to be crippled to the point of needing someone 24/7 taking care of me anymore than the rest of us do but think of this. If your cognitive function gets too bad you won't be able to take care of yourself anyway.
I can't light candles or use the stove alone because I forget even the top burners on. I leave bath water running til it overflows leave the door to the car and house wide open, and those are just quick examples. It's only getting worse and when it does how will I live safely without someone following me around?
Didn't mean to make you upset - just another way to look at it.
Thanks for sharing. Those are all issues that I am having and you're right. Most days I can't and don't drive anymore. I have gotten lost in a restaurant & at a hockey game. I get so confused in the grocery store that I want to cry and even with a list I never get it done right without help.
Some days are better than others but the days of clear brain are long gone.
Take care of yourself and thanks for sharing your thoughts. It helps to know that I am not alone!
Please don't worry about upsetting me. You didn't do that. Yes I do everything that you mentioned myself. In fact just the other day I was filling the kitchen sink to do the dishes and walked off forgeting what I was doing and the sink overflowed.
I think I worry about the physical aspect more because it seems to be getting worse faster than the cognitive problems right now. Just two days ago I fell down while coming up the stairs from my basement and had to crawl to the living room because of the pain in my left knee. If my knee had gone out just 5 minutes earlier I would have been going down the stairs and could easily have seriously hurt myself. It is those kind of incidents that makes the physical problems so scarly for me.
I was sorry to read about your fall. I hope that you have recovered. You have every right to be scared with the physical decline. All of it is scary! I guess we do the best that we can and be thankfull for friends etc.
I hope that you have been getting the help that you need and that you will have a LONG time without any further decline.
Take care - Well wishes
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