Well, we need to apologize for not having updated this blog for so long! Life gets in the way sometimes and it has nothing to do with the cognitive meltdown and more to do with just being very busy.
In September we posted that we were a part of presenting a cognitive workshop in Green Bay, Wisconsin. Janet's daughter, Calysta Phalen, a media student at the University of Wisconsin - Stevens Point, produced a video for that workshop and the video is now available online via the Wisconsin Chapter of the NMSS's Facebook Page. This video shows how we work together to deal with Tim's cognitive symptoms that result from his MS. We hope that this video will give you some ideas on how to manage cognitive symptoms, so here's the link:
Ok, this actually is a word. I looked it up. It means to throw somebody into a state of confusion.
Those of us dealing with the cognitive meltdown of multiple sclerosis know this word well. Tim and I dealt with it this morning as we were trying to organize our day and all the things we have to do. Tim is becoming a busy man, which is a good thing, but it requires him to organize his time, his emails, and many pieces of paper. It also requires him to communicate with more people than what he is used to. The whole thing is causing both of us to become “discombobulated”!
How do we handle it? At least 15 minutes each day to sit down and talk through what we both have to do. Tim enters his schedule into his phone and has all the things he needs to accomplish in writing on one or more lists. He also needs to know my schedule, so anything I am doing that deviates from the normal routine also goes into his phone.
This 15 minutes a day doesn’t always happen. We are busy, or tired, or just plain don’t want to deal with it. The problem with that? Discombobulation! (Yes, this is also a word.) We really have to force ourselves to take our 15 minutes or the whole day can fall apart. It has before. It probably will again. At least we took our 15 minutes today so we both know what we have to do. We are up for the challenge, though, and we will do our best to keep our schedules organized. Call it our “anti-discombobulation” campaign. (No, I didn’t find that one in the dictionary.)
By the way, for those of you who are interested, our workshop went very well and we got some great feedback from the participants. The Wisconsin Chapter of the MS Society is working with us to put the workshop on again sometime next year, so we are looking forward to that.
Here is a new video from Lauren Parrott about her insecurities related to her cognitive symptoms from MS. She makes some very good points about the accommodatons you can apply for while attending university. These accommodations are available at most universities and technical colleges, so don't let MS symptoms stop you from going to school.
By the way, our workshop went very well. We hope to post some information from it when we have it organized.
This blog entry from Bonnie Groessl, MSN, APNP, emphasizes the importance of learning to slow down the damage to the brain that aging can cause. While people with MS need more repetition to learn new things, they can still do it and should. Don't tell yourself that you can't learn anything because you have cognitive symptoms. You can learn new things with a little extra effort and some adaptations to help your memory.
Does this mean go back to school? No, not if you don't want to. Learning can involve anything from reading a book to learning a new hobby or sport to finally figuring out how to program that darn DVD player! Read Bonnie's blog to see why learning is so important.
