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    #31
    Learn Something New

    Hello peeps ,
    Pretty far down the M.S. road for me, 25 years ago my first physical symptoms became apparent. My Dx was not until 2008, so I had to a lot of trial and error. But the biggest challenges came when I transferred to a clerical in HR in order to avoid more physical labors. My employer TARGET was very cooperative finding me this new position and all parties thought we had nipped this limitation in the butt, until I literally started losing my mind.
    I recommend learning a new hobby like painting, wood carving or learning to play a new instrument and reading music. I did all of these and have found they were all extremely beneficial. In the end it's just challenging your mind to learn something new, new brain connections are made. Now I'm not saying I've been able to reverse my extensive damage but I am confidant that it has increased my confidence and led to far less stupid mistakes !
    Tracy

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      #32
      Couple of responses....

      I've seen a speech therapist work w my mom after dementia-like symptoms began. It was very interesting. She came to the home and spent first session testing mom to see where she had difficulties and gave her things to do each day until her next visit. Two things she was very specific about were keeping up w time via clock and calendar, and to keep her writing/signing her name ea day.

      I showed up at my first Neuro appt w a 25-yr chronological list of major life events/symptoms including surgeries, childbirth, and possible flairs. He didn't even look at it and asked me if I wanted it back. I requested that he put it in my file.

      Can't remember the others.....what else is new?
      Dx 3/4/12. Tec X 2 as of 7/7/13
      Weebles wobble and occasionally they DO fall down!

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        #33
        cognitive issues

        Cognitive issues are an extremely difficult part of my day, but fatigue. Still remains my biggest challenge. I do find that on my "good days" fatigue wise my brain seems to work better.
        I use my smartphone for almost everything. I use Evernote to organize my thoughts so I don't have scraps of paper laying around everywhere. Of course my calendar to make sure I & my family make our appointments. But I have found that sometimes I just need paper & pen. So I had several folders that also have 3 binders to hold paper. I put loose leaf paper in the folder section and paper in the binders. I have different colors for different things. Green for my budget, blue for grocery shopping with coupons in the folder and paper clips on the folder, and so on. I find this helps me & my family.

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          #34
          cognitive issues

          It is hard to read what every one else is going through because it is just like what I am experiencing. I do not have any physical symptoms which makes it harder for even neurologists to understand. I did have a neuro psych testing and it helped me more than anything. I found out that I am not losing my mind but that there are things that just don't work.

          I found out that after a college degree and working and raising children that I am now at best sometimes at a 8th to 12th grade level. The newer things are the less I remember. I don't like to be around people because they don't understand that I can't join in the conversation. When I do say something I can't remember what I said later.

          Learning new things is the most frustrating because I can't remember long enough to do it again unless I do the same thing over and over. I had never been on any drug therapy because all the side effects scared me but when I was talked into starting Rebif I had to stop after 4 months. I already deal with depression which I have been treating for years but the Rebif sent me over the edge. I had to stop because I didn't know what I might do.

          I have felt so much better since I stopped but I still have the cognitive issues. The worst part is my children that are all grown and living in other states don't understand. They remember the mother that could multi task and did things with them all the time. I can't get out of my world because I would be so lost and not understand anything. I live on routine and if something gets out of routine I am lost and can't function. I only drive places that I have been before but I can still get lost. I got a GPS but it didn't work because it got me more confused.

          I have found that I have to slow down and just enjoy what I can do without any problems. I am rearranging my house so it is simple and I know where everything is to keep the frustration under control. My sense of time is totally gone. What seems like 5 minutes can be 30. I can't believe that it is already September because I can't remember anything that I did this year. I know that time always goes faster when you get older and I am always told "it happens to everyone when they get old" but when did 59 get old.

          I know my last MRI showed my brain atropy was advanced for my age but is that from the MS? There is so much that is unknown about MS and if I try to figure anything out about my MS it just makes me more depressed. I'm glad that I live alone (except for my 5 dogs which are great therapy) because I can't cook any more and if I think I just did something like vacuum or dust it could have been a week before. I am now just accepting things the way they are and not think about what I used to could do with no problem. Do what I enjoy and just live!

          ** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

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            #35
            cognitive issue

            Hi there, I have MS for 17 years, I saw the results of my MRI, brain decreased. I was desperate to find something which would help me. I found "lumossity" I am using more than a year, I think it helped me a lot, it is 96 dollars per year, but according my husband I am using it a lot, and I feel it helps with my memory, what I really like it is not comparing to others, it is always comparing to myself. How I improved.

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              #36
              Originally posted by its2much View Post
              it can take me days rather than just minutes as it used to.
              This morning I made coffee but forgot to put the carafe in its place - coffee all over the counter top and down to the floor.
              Hell, I did that before I had MS, you should see me now. I can't seem to find the words I want so easily. For example, I was writing a political blog and wanted to use the phrase "quid pro quo" and I got as far as "quid pro" and had to Google the first two words to remember "quo."

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                #37
                to JAH513

                about rebif and depression. most ms drugs do affect one emotionally. the only one i know that doesn't is copaxone. you might want to look into it. it has no side effects that i have noticed. it is the only drug i can take because of emotional side effects from the other ms drugs.
                sorry you are having such a hard time.

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                  #38
                  spelll...speeel...sp - oh, yuck!

                  My son, who is ADHD and dyslexic, brought it all into perspective for me. He is a senior in h.s. and still has vocab/word definition quizzes. Needless to say, there are plenty of chances for error. On his last test, he spelled the word correctly on the spelling portion of the quiz, but messed up on the definition part. He said to me, "Darn that chronic dyslexia!" It helps me to remember not to sweat the small stuff. What is the small stuff? Those little things that m.s. in changing in my life.

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                    #39
                    I sometimes can't

                    even think of the word to do a google search or look in the dictionary. Sometimes can't even give a description of the word I'm trying to find!

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                      #40
                      I have lose so much to MS but losing my mind is what was I saying?

                      Hey I know were you are coming from its not much fun its been 2 years of a really bad memory. Like simple words that are easy to spell and well you go blank! My work insurance didn't believe how bad it had become. So they flew me and my wife to Vancouver BC Canada to see a UBC cognitive specialist.2 days of extreme test we are taking 8 to 9 hours a day. Truthfully can't remember what she made me do. There were questions about what I don't know,spelling and reading and math not basic but math that a typical grade 12 could do. Was murder and embarrassing I do remember doing puzzles that had small pieces she got a little frustrated at how long I took to complete them, but I explained it by saying you put oven mitts on and try to pick up rice then you will know what its like! She calmed down. The worst part was the flight small prop plane lots of vibration a 55 min flight each way took a week in bed to recover. Don't worry about the cognitive it will drive you into a mass depression, it may improve it may not its just how we work not all of us but way to many. Even this reply to your post read it a while back so every day a read it again because I lose my train of thought and right some more,so this has taken days! But you know what I'm cool with that because I have MS I didn't mess my pants I didn't fall or even burn the kitchen down so its a good week! I did have the walking farts at mental health office but if I remember right it was so funny it didn't matter mind you my doctors receptionist did bang her head on her desk when she folded over let's hope it didn't effect her memory! This is my second or third year that I have not be able to work I'm a 49 year old that was forced to retire. Its hard trust me I lose my mind and my drivers license. So 2 years locked in my house I gave up! Even my garden that normally was perfect is a mess but that's ok I have MS and that's the way it goes. What brought me around was my kids this summer I have a lot of kids 4 daughters 2 sons then 2 grand daughter and 2 grand son my kids range from 25 to 5 yea see I was crazy for a long time! Coming to terms with MS is hard I know I have worked sense 14 till I was 47 for big company's from germany to LA to Toronto and Vancouver now I'm happy to cut the lawn on the tractor and that hurts some times! This Summer my oldest daughter and my grand daughter came to visit they live 8 hours away, so they took me to my happy place Barkerville its 45 min from our home, its one of the last gold rush towns in Canada, I know most that work and run it so its like seeing old friends. I couldn't walk it not even part of it so the kids grabbed me a wheel chair the one thing I had told my self I would never let my MS make me use one. Well with out giving in the trip would have been wasted so I used it and had an awesome day! Well I hear it was awesome but I can't remember most of it. But you know what that's ok cause I have MS. I don't write notes on paper but my smart phone is my new brain for appointments, medications, to make dinner or warn me that pot of food takes 15 min and I better get off the oven. We have to adapt. I my know be able to work but I know me I will again and it to will be a fun and profitable and all my children and there family's are my driving force and the wife (not married to each other) well we are but to different people! My kids say hey dad dance like know one is watching and I do. Don't worry its all good we all deal with this MS thing in our own way! Do like me just for get about it. PS you can now pass wind and get away with it! I don't care how old any one is its always funny!

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                        #41
                        Cognitive issues ?

                        Well I've had my fair share for sure !! I can't remember thing's a little to much for me ! I've even be caught
                        substituting word's ( like I have alzhimer's or something )
                        I could go on and on ( But that would make be a WHINER
                        I alway's call myself a " TROOPER " despite I have this STUPID DISEASE )
                        That's my thought's for now thanks for listening !
                        Holchel

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                          #42
                          This is the most troubling of my MS symptoms and so hard to come to terms with it.
                          I have problems in conversing with people because I am not able to keep up with a conversation, forget words that I need and I feel overwhelmed. I do better talking on the phone, why is that. I have problems in making decisions about important things that need to be completed. I sometimes have to just take on only one task at a time because it is so difficult to complete anything. It is so hard for me to learn something new or to understand something new. I have to read new data or information over and over until I can get it.

                          I made a decision to apply for disability without any help and it took so long for me to get the application completed BUT there was no appeal and I am receiving my ssdi. So it might take FOREVER for me to get things done, but I still do a good job when it is completed.
                          I cannot drive my car to visit my relatives that are about an hour away because I fear I will feel overwhelmed with the drive and get lost. I tell my relatives that it is my leg, but it is not my leg because it is my cognizant problem

                          I really appreciated everybody's stories about this terrible symptom. I looks like I am not alone. Thanks

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                            #43
                            Ditto to all.

                            I've found "Luminosity" to be of great help. It can be found online. There are brain games that focus on speed, memory, flexibility,attention & problem solving. They send daily reminders, it takes up very little time to do; and, you WILL have fun!
                            I believe it's so helpful because you begin to realize the skills you've never noticed you had, and, the steps it takes to regain them.

                            Comment


                              #44
                              MS memory

                              I take Namenda and Aricept, which hypothetically help, but as a guy who's actually disabled by MS memory problems, the best I can do is sympathize.

                              Ain't no fun, but it's a good excuse to re-read old favorite books and plead ignorance when fully necessary . . .

                              Comment


                                #45
                                Sounds SO familiar...

                                I hope you don't mind me responding. I am an MS caregiver to my husband, but I am a chronic pain patient. I also suffer cognitive issues, though not exactly the same, and help my DH through his...so much of this sounds SO familiar, on both fronts...I couldn't help but respond.

                                "I have been burning myself a lot lately while baking."
                                My DH has started burning himself - A LOT - lately. I hadn't really attributed it to the MS, just chalked it up to distraction and impatience in general, but it's happening so often. . . it makes more sense, where the distraction and impatience is coming from. . .he used to complain about my carelessness, since it would scare the crap out of him every time I would shout out if I cut myself or burned myself or dropped something on my foot, etc. . .I kept thinking how ironic it was...

                                "I like sudoku. . ." I'm not sure how you feel about it, but don't discount word or logic puzzles. They don't have to be difficult. I LOVE fill-ins, that LOOK like cross-words, but without the clues, and you have to fit the words into the grids. There are other types of logic puzzles as well that can make you think and keep your brain working. I love Sudoku as well, but it's ONE type of thinking and eventually gets easy. Changing things up now and then keeps those synapses firing!

                                "A central place to keep all my notes is very crucial"
                                My husband and I just began a new school year - I'm a teacher and he used to sub but just started student teaching - at 2 different schools - after 8 years of subbing and finishing college after 18 years working toward his degree. (He got his BA last May and student teaching is his last step to his license.) We have MASSIVE changes to our routine – I also started PT - and are desperately trying to adjust – getting up an hour earlier, going to bed at a set time, AND prepping EVERYTHING. We have checklists. One for the evening before. One for the morning, to make sure we don’t forget anything. And we really need more. Grocery lists, dinner menus, etc. Neither one of us has the cognitive capacity to THINK STRAIGHT long enough to PLAN for things beyond school/work – we’re bordering on autistic levels (slight hyperbole. . . I HOPE!) with the need for routine right now just to function, so these lists are lifesavers. . . right now they’re in MY little memo pad (we both have them!) – but I’m going to type them up and print them onto card stock, slip them into sheet protectors and put them in a binder. THEN, we could either get really good quality sheet protectors, OR slip the one we are using into the COVER of the binder and use dry-erase markers to check off each one as we go. Once we’re done with it, wipe it clean, back in the binder, and off we go!

                                “Laughing it off is good And so is asking people to slow down and explain in more simple terms. Sometimes I have to tell my children (older) that my brain is no longer working so please save their questions or stories for the next day. They always understand and can see the struggles written on my face ... confusion.” The tone with which this comes across HERE is SO appreciated!!! My poor dear husband has so much difficulty like this, and his frustration often overflows before I have noticed – with much less – laughable - results. I always feel so badly that I cannot sense his frustration, and our styles in THIS SENSE are quite incongruous – I need clarification and to understand. Having things explained to me so that I fully comprehend is what helps me avoid confusion and frustration. He finds “too much information” overwhelming, confusing, and chaotic, so when I think he doesn’t understand what I said or meant, or maybe even didn’t hear clearly, I AUTOMATICALLY go on to clarify, explain, describe further…(it’s just my nature, being part of my own needs). . . and he will lose it – and I will feel awful, knowing I should know better! Still, I feel bad knowing I should STOP TALKING, but it is also SO important to have patience with those you love, especially if/when they return it.

                                Re: "neuro/psych testing” - I hope you found what you were looking for. You won’t get many specific details – you really have to do it to find out what it’s all about…my DH finally got his done when he his cognitive and emotional symptoms flared up to inferno proportions in a blink. The tests are challenging – for anyone, with or without cog fog – so you will feel like you’re failing – but the whole point is to find a level…and at some point, whether it’s 2 years, 5 years, or 25 years, you may repeat the tests, and compare, to see how they are changing. This is what tells your neurologist – in VERY SPECIFIC (you have no idea how specific) terms, how much difference there is in that letter you referred to. You will get data giving you your “levels” on SO many different types of cognitive functioning, more than one of which is required to write that letter! If you get tested now, it will show numbers that would be VERY different had you been tested back when you could type fast with few to no mistakes. However, the sooner you test, the sooner you can find out what’s going on, AND have a basis for comparison.

                                “I used to be excellent at written communication, spelling, grammar, etc. 4.0 gpa in college all the way through…” I am an English teacher and struggle to find words in addition to having memory problems. I can’t seem to store new info very well since the accident…170 new names every year used to be cake, but now they won’t stick. . . between searching for a kid’s name and a word I’m trying to teach with, some days are just. . . tough – but I’m not giving up.

                                Have you heard of the Spoon Theory? If not, look it up on YouTube - it is my new mantra, and I'm LEARNING, but it's really an excellent way to look at things, just like everyone said. We have to learn to slow down and accept that we can't do it all. Count your spoons and save some for a rainy day. Say no. Accept your limitations. A LOT of people have a LOT of trouble doing these things - like me. Until we do, we're just beating our heads against the wall.

                                Good luck to you! Thanks for your post!

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