ChatMS this week was all about cognitive issues. I'm a few days late, but I'm still trying to get the word out there!
Love to all! Feel free to copy/paste the questions to your own blog to spread the word!
....
Q1.) Have you ever experienced cognitive issues (long/short term memory,
infor processing, word finding, etc) because of your MS?
I have - and it's one of the most devastating symptoms, and one of the hardest to prove to others. This is an easily invalidated symptom for people to say "oh, that happens to me sometimes, too," and they just don't "get" it.
Q2.) What kinds of cognitive issues have you experienced?
I have struggled with word finding, concentration while reading and listening, and most persistently - names. My cognitive issue of word finding was thankfully short-lived, and only stuck around for about six months. I was doing a lot of writing at the time, so it was obvious what problems I was having while going back through and editing. For example, I was writing part 3 of my 'novel' in the midst of the worst parts of treatment, but had consistently described one particular character's outfit as being made of leather. Well, apparently one of my word drop-outs was leather, because I inexplicably started describing part of his outfit as including "boots made of hide." Yeah, you can say what you want about fluffy descriptions, but this wording made no sense in the context of the story. I couldn't even think of "suede," so I picked "boots made of hide," when I couldn't recall "leather." That's the one I noticed the most, but it wasn't the only example. Thank goodness that didn't last long!
I also cannot remember names to save my life. I can tell you what movie an actor was in based on a voiceover for ten seconds, but I can't tell you their name.
Except Tom Hiddleston. I can't forget that name, haha! But it's very embarrassing with patients I see constantly to still grasp for their name every time. It took me weeks to learn all my coworkers' names - and there's only about 8 people in my office. When it was really bad just before my official Dx, I couldn't remember four women's names. Four!!
Early in my pregnancy (long before 'pregnancy brain' can be blamed) I had an early flare and dealt with a terrible MS fog. One day I stood in the kitchen, about to put the liquid cheese in my velveeta bowl for lunch, but something just.... didn't look right. I couldn't put my finger on it. It took me a solid five minutes of looking at the bowl before I realized: I didn't cook the noodles yet. I'm very glad that the fog didn't last long!
Q3.) How long had you had MS before you started to experience cognitive issues?
I've had symptoms since 2010, that's about when I started to get name drop-out. But the really bad word finding was all at my big flare in early 2014. Concentration may not be related to my MS so much as my hearing loss, I have always struggled to pay attention while reading and I have to work that much harder while listening. I would like to blame that on my MS but I don't think so!
Q4.) How have cognitive issues due to your MS impacted your daily life?
See the answer above re: name recall - that's the biggest thing for me, consistently.
Q5.) Did your doctor talk to you about the potential of having cognitive issues do to your MS?
Psh. No way!! I think so many MS symptoms are shirked as something else because the disease process is different for everyone. I think of this when I consider all the digestive issues, including MS Hug, that I've suffered from, only to be told that it wasn't my MS. I don't want to blame everything that I deal with on the MS, but I know what is because of the MS and what isn't. It would have been nice to be warned about cognition early on.
Q6.) Have you ever been tested for cognitive issues? If so, how?
Not by my neurologist, but I participated in a study at the local university just after diagnosis. One of the tasks was on word finding - remember, this was at a time when word finding really was one of my struggles. I'll never forget looking at a card with the word, 'panacea' on it, and being asked to describe it. I know that work, I know what it means, I know that it can be synonymous with "solution" and "safeguard," but I couldn't think of it. I told the kid doing the research, "I know what that word means, but I can't tell you what it means." About a week later, I had Steve ask me to do a similar task (my husband Steve is a psychologist) and I was able to complete them all. Again, very grateful that this issue didn't last forever.
Q7.) Is there anything (stress, temperature, time of day, etc) you think increases your cognitive problems?
Stress - and current flares. When I'm flaring, it's much worse. And pregnancy, haha, because now I have that to contend with!! I have started slurring my words and mixing up my consonants. I'm going to blame this on pregnancy until the baby comes before I panic.
Q8.) What measures do you take to improve your cognitive problems?
I kept writing. I do the blog and am always learning. I tell myself not to give up, and practice my music. All these things should improve my overall cognition.
Q9) Cognitive issues are invisible & can be hard to explain to others. Have you
had any difficulty explaining/getting people to believe you?
Absolutely! I have heard so many times, "Oh well I have dealt with that," but many of these folks forget that they are over twice my age. At 25, I should have been able to remember all the names of the 10 women in my class without struggling. At 27, I should have been able to remember the four names of the women I worked with daily - who had nametags on their desks!! I should have known that putting the cheese in my macaroni before cooking it was not correct. This is not 'normal' for anyone, cognitive dropout is not a myth - it may not affect me daily (thank God because I would probably lose my job if I had too much trouble beyond remembering names) but I'm not making it up!
I'm glad we got to talk about cognition with MS this week - please remember to spread the word!
Love to all, MSloan
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