tag:blogger.com,1999:blog-16030180600018841242024-02-19T01:55:33.583-08:00Thoughts on the MS Cognitive MeltdownOur thoughts on living with the cognitive issues of multiple sclerosis and how these issues affect our relationships with each other, our family and our friends. We will also include interesting and relavant links to articles, video, and other information.Unknownnoreply@blogger.comBlogger61125tag:blogger.com,1999:blog-1603018060001884124.post-30605111737208562352013-07-06T06:29:00.002-07:002013-07-06T06:29:11.779-07:00Switching to Gilenya<!--[if gte mso 9]><xml>
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Tim has been on Tysabri for over 3 years now. He really
likes how Tysabri has helped him maintain or improve his abilities, but he has
become worried about developing PML, so he has decided to switch. He will be
trying the new oral medication Gilenya. So far, he has been off of Tysabri for
a month and has had the vision exam done, but we have heard nothing else. I did
call his doctor the other day and received a message back stating that the
transition was in process. The nurse also said that Tim has to be off of
Tysabri for a few months before beginning Gilenya. Really? That was news to both
of us.</div>
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<br /></div>
<div class="MsoNormal">
While Tim is feeling some effects of being off of Tysabri,
such as some increased fatigue and walking instability, his cognitive symptoms
do not seem to be affected by the change. In fact, he had cognitive testing
done again last week and his skills have actually improved. He made the most
improvement on his ability to analyze spatial relations, and either improvement
or no change in most other areas. He did decline a bit on his word finding
ability, especially if the words start with letter C. Interesting that it would
be that specific. I had noticed that Tim has had a little more difficulty
finding words, but I have not kept track of whether or not they start with
letter c.</div>
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<br /></div>
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We will keep you posted on how this transition goes. Tim
will be very happy to not have to deal with needles anymore, but we are both
wondering how effective this drug will be. We hope that it will be as effective
as Tysabri has been.</div>
Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-19443188534296989372013-06-17T06:29:00.001-07:002013-06-17T06:32:26.839-07:00Tim and Janet On the Trail - Granite PathWe are going to begin posting here again, and the topics will relate to the many aspects of MS and how they relate to our daily lives. So here is an entry that is not about MS, but MS plays a role.<br />
<br />
For Christmas this year, Tim’s daughter gave us a Wisconsin state park sticker. This pass attaches to the windshield of the car and allow the vehicle admission into any Wisconsin state park for the calendar year. We thought we had better use it, so we decided to visit as many state parks as we can this year and hike on the trails. Periodically I will post an entry here about one of these state park excursions, called Tim and Janet On the Trail.<br />
<br />
Our first state park excursion was to Governor Tommy G. Thompson State Park in northeastern Wisconsin. This park is located about a half hour west of Crivitz, in river country. We started out in the morning, our car equipped with fishing poles, walking sticks, jackets, bug spray, and a cooler. We stopped to buy gas, a picnic lunch, and bait. Of course, since we are rummage sale addicts, we also stopped at a rummage sale, and then a flea market, and then another rummage sale. So much for our goal of getting an early start. By the time we got to the park, it was lunch time.<br />
<br />
We ate our lunch by the side of this little lake, which is surrounded by forest.<br />
<br />
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There are no motors allowed on this lake, and the wind was roughing up the water on this day, so there were no boats. In fact the wind was so strong that we had to hang on to our garbage pretty tightly so that we wouldn’t be accused of littering.<br />
<br />
We finished our lunch, pulled out our walking sticks, and started our hike by walking in circles. From our parking lot, we could not tell where the trails started! We wanted to hike the Granite Path, so we asked a nearby maintenance worker where it began. He promptly replied that he didn’t know, since he had only been working in the park a few weeks. He did point us in the direction of the trail head, where all the trails started.<br />
<br />
We hiked down the trail and up this hill along the power line clearing.<br />
<br />
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When we got to the top of the hill, we read the trail marker and realized we had hiked the wrong way! This was the Forest View Trail, which is 3.5 miles long. Nope! Not the one we wanted! We hiked another trail that crossed through the woods to the trail we wanted.<br />
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Once on the Granite Path, we hiked past several very large granite rock formations.<br />
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When you see these rocks, the first thing you want to do is climb on them, so one formation offers a trail to the top, shown here.<br />
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Judging from the stacked rocks and burned areas, this rock has been quite the party spot in the past.<br />
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We also hiked through a very pretty popple forest.<br />
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This little offshoot trail led to Popple Rock, which was the largest rock formation we encountered.<br />
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Popple Rock sits on the edge of the park and extends past the park boundary.<br />
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Tim uses walking sticks to keep his balance when hiking, and even though this trail was fairly easy hiking, the sticks came in handy on the down slopes. Tim uses the sticks for support when hiking down hill so that his knees do not give out. Good thing, since I would not want to pick him up! <br />
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We saw many varieties of wild flowers, insects, and birds on our walk.<br />
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Butterflies and moths flitted around the wild strawberries and columbine, while paintbrush danced along the edge of the trail.<br />
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We did not see any animals, but did spot some deer tracks, a few very tiny, meaning that a doe and her fawn had passed through. <br />
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This wildlife also came through the park. I think he was taking refuge.<br />
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This was a fairly easy and enjoyable hike. Unfortunately, we forgot the sunscreen at home. Tim is now calling me lobster girl!<br />
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<br />Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-67136466638258981072011-01-07T15:07:00.000-08:002011-01-07T15:10:06.374-08:00Cognitive Meltdown Video<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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:</span><br />
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<div style="text-align: center;"><span style="font-size: large;"><a href="http://www.facebook.com/pages/National-MS-Society-Wisconsin-Chapter/209106634762#!/video/video.php?v=1368486351188">You Are Not Alone: How Tim and Janet Take On the Cognitive Meltdown of Multiple Sclerosis</a></span></div>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1603018060001884124.post-58354001080529084252010-10-12T05:07:00.000-07:002010-10-12T05:07:58.633-07:00Discombobulated<span style="font-size: large;">Ok, this actually is a word. I looked it up. It means to throw somebody into a state of confusion. </span><br />
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<span style="font-size: large;">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”!</span><br />
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<span style="font-size: large;">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. </span><br />
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<span style="font-size: large;">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.)</span><br />
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<span style="font-size: large;">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.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-47601938086644606372010-09-22T04:27:00.000-07:002010-09-22T04:27:43.353-07:00Lauren Parrott on Cognition and School<span style="font-size: large;">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.</span><br />
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<div style="text-align: center;"><a href="http://www.youtube.com/watch?v=4f45btkPMPo&feature=player_profilepage"><span style="font-size: large;">Living With Multiple Sclerosis - Insecurity Part 2</span></a></div><div style="text-align: center;"><br />
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<span style="font-size: large;">By the way, our workshop went very well. We hope to post some information from it when we have it organized.</span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1603018060001884124.post-58164983133584928452010-09-09T04:16:00.000-07:002010-09-09T04:16:15.062-07:00Back to School?<span style="font-size: large;">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.</span><br />
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<span style="font-size: large;">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.</span><br />
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<div style="text-align: center;"><a href="http://wordsforwellness.com/?p=312"><span style="font-size: large;">Learning is Good for your Brain</span></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-73693958610978422792010-09-07T18:24:00.000-07:002010-09-07T18:24:56.672-07:00Cognitive Meltdown Workshop This Weekend!<span style="font-size: large;">The workshop we helped to organize is this Friday and Saturday, September 10 and 11, at the Tundra Lodge in Green Bay, WI. We are pretty excited about it - wish us luck!</span><br />
<br />
<div style="text-align: center;"><a href="http://main.nationalmssociety.org/site/Calendar/1606966317?view=Detail&id=217904"><span style="font-size: large;">Cognitive Meltdown: How You, Your Family & Friends Face MS Together</span></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-12493392934019197772010-08-18T04:18:00.000-07:002010-08-18T04:18:37.979-07:00Switch to Generic?<span style="font-size: large;">Janet writes: Our health insurance company insists on generic medications when they are available. We can get brand name, but our doctors must specifically prescribe and pre-authorize these and we have to pay a higher co-pay. Most of the time it’s not an issue.</span><br />
<br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">This past week, however, it was a pretty big issue. Most people with MS are on some type of anti-depressant, and Tim uses Effexor. Well, the generic form of Effexor was recently approved and, of course, our insurance company automatically switched his prescription. We didn’t think anything of it, but after a day or two taking these capsules Tim started complaining of dizzy spells, more anxiety, more difficulty focusing, and more word finding problems. He also started his “wobbly walk” thing again.</span><br />
<br />
<span style="font-size: large;">We called the doctor, explained the drug switch, and the doctor put him back on brand name Effexor. This required a couple of days to allow the prior authorization to go through. By yesterday, after not having had his drug for almost a week, Tim had a fairly major “meltdown” that was so bad he couldn’t even describe it to me. (Other than the tremors which I could see.) Let’s just say I was ready to haul him into the emergency room. I called the drugstore, however, and the prescription was ready, so I picked it up and he took one right away. After a day and another pill, he is fine and out on the lake fishing.</span><br />
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<span style="font-size: large;">So the moral of this story is, don’t let your insurance company switch your medications without approval from your doctor. Even if the active ingredient is the same, the inactive ingredients may not be, and you may not react to these medications the same way that you react to the brand name drugs. This doesn’t mean that generic medications are bad, and they do save you money, but please make sure they are the right medications for your condition before making the switch.</span><br />
<br />
<span style="font-size: large;">Here’s a short, easy to understand article on the differences between brand name and generic medications:</span><br />
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</span><br />
<div style="text-align: center;"><a href="http://www.associatedcontent.com/article/61838/generic_vs_brand_name_drugs.html?cat=5"><span style="font-size: large;">Generic Vs. Brand Name Drugs</span></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-20942685820540076462010-08-04T05:18:00.000-07:002010-08-04T05:18:28.730-07:00CCSVI and the Emotional Journey by Angela<span style="font-size: large;">This YouTube video, CCSVI and the Emotional Journey, was produced by Angela, who crusades for CCSVI treatment through her website, </span><span style="font-size: large;"><a href="http://www.flowers4ms.com/">http://www.flowers4ms.com/</a></span><span style="font-size: large;">. While Angela's primary topic in this video is CCSVI, she also speaks about cognitive decline, Tysabri treatments, PML, and frustration with the medical establishment - all topics that those of us dealing with the "cognitive meltdown" can relate to. You might find yourself nodding in agreement with some of her statements.</span><br />
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<object height="344" style="background-image: url(http://i1.ytimg.com/vi/8WY9VbQuA1s/hqdefault.jpg);" width="425"><param name="movie" value="http://www.youtube.com/v/8WY9VbQuA1s&hl=en_US&fs=1"><param name="allowFullScreen" value="true"><param name="allowscriptaccess" value="always"><embed src="http://www.youtube.com/v/8WY9VbQuA1s&hl=en_US&fs=1" width="425" height="344" allowscriptaccess="never" allowfullscreen="true" wmode="transparent" type="application/x-shockwave-flash"></embed></object>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-87262404156778673902010-07-31T15:26:00.000-07:002010-07-31T15:26:10.716-07:00Cognitive Meltdown Workshop<span style="font-size: large;">When we started this blog, we were working with some members from our local support group on an idea for a workshop to address the topic of cognitive symptoms in MS and how these symptoms affect relationships with support partners. After a lot of time and work, the workshop is put together and scheduled! We really hope that we can help some people address the cognitive issues they are experiencing and how to handle those issues with their families. Here's the link for more information:</span><br />
<br />
<div style="text-align: center;"><a href="http://main.nationalmssociety.org/site/Calendar/1606966317?view=Detail&id=217904"><span style="font-size: large;">Cognitive Meltdown: How You, Your Family & Your Friends Face MS Together</span></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-58082960232395028042010-07-08T07:31:00.000-07:002010-07-08T07:32:37.707-07:00Cognitive "Melt"Down<span style="font-size: large;">Hot, hot, hot. Hot and steamy. When did we move to the Amazon? Tim is wearing his cooling vests so much, I’m not sure they will last through the summer!</span><br />
<br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;">The hot weather causes fatigue, of course, and that causes the cognitive symptoms to kick up. Tim spent yesterday morning fishing and yesterday afternoon taking a nap because he really couldn’t do anything else. He was better by evening and admitted that the heat had wiped him out. Sleep and cool indoor air fixed the problem. I feel bad for anyone who does not have access to air conditioning in this weather.</span><br />
<br />
<span style="font-size: large;">If you don’t have a cooling vest and want to get one free, you can apply for one through the Multiple Sclerosis Association of America. Their program allows you one free cooling vest, plus wrist cuffs and a neck wrap. Here’s the link:</span><br />
<span style="font-size: large;"> </span><div style="text-align: center;"><a href="http://www.msassociation.org/programs/cooling"><span style="font-size: large;">Multiple Sclerosis Association of America Cooling Program</span></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-31252166258267723432010-06-29T05:55:00.000-07:002010-06-29T05:55:37.754-07:00Blueberries!<span style="font-size: large;">Janet writes: Tim doesn’t care for summer due to the heat. We usually spend June, July and August with the house shut up and the air conditioner humming away. I have to go outside to thaw out periodically. But one reason we like summer is that fruit is in season again, especially blueberries!</span> <br />
<span style="font-size: large;">We live in Wisconsin, so blueberries are usually expensive. Starting in June, however, the price comes down and supply becomes more abundant, so we buy them every grocery shopping trip. We put them on cereal or oatmeal, or just eat them plain. They are delicious! </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">If you are health conscious, you will also know that blueberries are one of the healthiest foods you can eat, especially for brain health. These berries are nature’s little memory pill. Blueberries have the highest antioxidant levels of any fresh fruit and the vitamins and minerals they come packed with all assist in promoting healing of damaged brain cells. There are many articles about the health benefits of blueberries online. Here’s one that gives you a list:</span><br />
<br />
<span style="font-size: large;"><br />
</span><br />
<div style="text-align: center;"><a href="http://www.womenfitness.net/blueberries.htm"><span style="font-size: large;">Top 10 Health Benefits of Blueberries</span></a></div><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">So have a happy summer and eat a whole lot of blueberries! </span>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-2744086143430890692010-06-28T04:06:00.000-07:002010-06-28T04:06:11.216-07:00ILiveWithaDisability.com<span style="font-size: large;">Found this fairly new website this morning. Created by Scott Sussman, this is a social networking site for people with disabilities. The site has been up for about a month and promises a safe network to allow you to post your feelings, opinions, etc. about your disability. Family and friends can join as well. Check it out here:</span><br />
<br />
<div style="text-align: center;"><a href="http://ilivewithadisability.com/"><span style="font-size: large;">ILiveWithaDisability.com</span></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-14973677599809547842010-06-14T08:49:00.000-07:002010-06-14T08:49:23.090-07:00It's Not Easy<span style="font-size: large;">Janet writes: I apologize for the couple weeks of silence from us. Between health problems and issues with children, we have been a bit preoccupied. Solving all these problems puts the ol' brain into high gear for a while, and when you are dealing with the cognitive symptoms of multiple sclerosis, that high gear eventually burns out and leaves you on the side of the highway. Anyway, things are settling down slightly, so I wrote the following: </span><br />
<br />
<span style="font-size: large;">We read a lot of information about multiple sclerosis and about health problems in general. It seems everyone is an expert and everyone has their little niche of advice to give. “Use a pocket planner.” “Take fish oil.” “Get enough vitamin D.” “Get a Blackberry.” And so on. We all want that one little thing that will make all our health problems better, and many people are perfectly willing to step up and hand it to us. I’ve done it myself – and I should know better!</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">The fact is, even with all the gadgets, vitamins, and special helps, living with the cognitive symptoms of multiple sclerosis is not easy. Life has a tendency to bombard you at times, and all the calendars in the world don’t compensate for that feeling of being overwhelmed. Four capsules of fish oil might help the memory click along a little better, but they don’t stop the mid-day crash when all body systems go into “sleep” mode, including the brain. Tim becomes very frustrated when he can’t finish a project because his head won’t let him or when he has to check his phone calendar five times because he can’t remember if he entered something correctly. My own patience wears a bit when I have to remind Tim of appointments or other things multiple times in a day. We both feel like we get stuck in the cognitive mud and the only thing that will pull us out is a good nap!</span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">I guess what I’m saying here is don’t expect a miracle cure for the cognitive symptoms of multiple sclerosis, but don’t give up on living either. All the compensation techniques, gadgets, and vitamins might not be “the answer”, but they can get you through a day. At least, they can pull you along until nap time!</span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1603018060001884124.post-7006333698416010992010-05-25T05:34:00.000-07:002010-05-25T05:34:28.206-07:00World MS Day<span style="font-size: large;">Tomorrow is Janet's son's high school graduation day. It is also World MS Day. What a great time for everyone to acknowledge the widespread effect of multiple sclerosis. Our Wisconsin Chapter of the National MS Society serves over 10,000 people in the state. We guess that Tim will not be the only one in the gym tomorrow night who has MS.</span><br />
<br />
<span style="font-size: large;">Here's an eye-catching video that emphasizes how many people around you have MS. Thanks Lisa!</span><br />
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<div style="text-align: center;"><a href="http://vimeo.com/5183301"><span style="font-size: large;">Beautiful Day</span></a></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-13763158715615277572010-05-18T10:41:00.000-07:002010-05-18T10:41:36.182-07:00Change It Up<span style="font-size: large;">Janet writes: Tim and I had an argument the other day over a project we are working on. The argument started because I was attempting to explain something to Tim and he was feeling overwhelmed by how I presented the information. He responded by plugging his ears, which ticked me off, of course. The project ended up thrown in his lap.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">After we were both cooled down, we left the house so we wouldn’t be disturbed and tried again. Tim still didn’t understand me, so instead of talking, I proceeded to write everything down and had him read it. Success! He understood what I was talking about. He had questions, I wrote down the answers as well. More success! We were able to resolve our argument and finish our project in about an hour.</span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">This strategy is used by teachers every day when teaching students, and can be very useful in your house if you deal with the cognitive symptoms of MS. We all know that MS acts differently from day to day. Your ability to take in and process information may also differ from day to day. One day, you may understand what you hear right away but have to read the same sentence five times to understand it. The next day it might be the opposite – you feel overwhelmed by anything you have to listen to, but can scan a page of writing and understand it just like that. And there are some days where you just have to do it before you get it.</span><br />
<span style="font-size: large;"><br />
</span><span style="font-size: large;">If you feel like you are having difficulty understanding something important, try changing the way you get the information. If you can’t read it, have someone read it to you. If you can’t listen to it, get it in writing. If both are escaping you, have someone help you with a sample or demonstration. One way or another, that information will get into your brain. Oh, and a helpful hint – don’t plug your ears when your spouse is trying to talk to you. You will not have any trouble understanding their reaction!!!!</span>Unknownnoreply@blogger.com3tag:blogger.com,1999:blog-1603018060001884124.post-45152264180117564182010-05-11T19:15:00.000-07:002010-05-11T19:15:01.775-07:00NEW Website<span style="font-size: large;">We attend a monthly MS support group in Green Bay, Wisconsin, and for the past year our group has had a website under construction. Why has it taken a year? Well, we don't really know, but as with anything connected to MS, we can bet the cognitive meltdown had a little something to do with it. Anyway, it is finally finished and functional! Hooray! We are pretty proud of it. Here is the link:</span><br />
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<div style="text-align: center;"><a href="http://www.newmssupportgroup.com/"><span style="font-size: large;">NEW Multiple Sclerosis Support Group Website</span></a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-85268911655284652922010-05-06T05:04:00.000-07:002010-05-06T05:04:05.859-07:00We Need to Read This Book!<span style="font-size: large;">Janet writes: I stumbled across this interview today with Barbara Strauch on how the middle aged brain functions. There seems to be lots of good news here! I guess it would make sense to know how your brain is supposed to work before making comclusions about how your brain is actually working. Has anyone read this book and what do you think of it? Personally, I will be purchasing a copy. Here are the links for the interview and and book:</span><br />
<span style="font-size: large;"><br />
</span><br />
<div style="text-align: center;"><a href="http://well.blogs.nytimes.com/2010/04/30/the-talents-of-a-middle-aged-brain/"><span style="font-size: large;">The Talents of a Middle-Aged Brain</span></a></div><span style="font-size: large;"><div style="text-align: center;"><br />
</div></span><div style="text-align: center;"><a href="http://www.amazon.com/gp/product/0670020710?ie=UTF8&tag=thoonthemscog-20&linkCode=as2&camp=1789&creative=9325&creativeASIN=0670020710"><span style="font-size: large;">The Secret Life of the Grown-up Brain: The Surprising Talents of the Middle-Aged Mind</span></a><span style="font-size: large;"><img alt="" border="0" height="1" src="http://www.assoc-amazon.com/e/ir?t=thoonthemscog-20&l=as2&o=1&a=0670020710" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; margin: 0px;" width="1" /></span></div><div align="center"><br />
</div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-77254624260046344542010-04-27T05:57:00.000-07:002010-04-27T05:57:27.998-07:00Mobile Calendar<span style="font-size: large;">Janet writes: I think Tim and I would be lost without his cell phone. He has made it a habit to enter every appointment, meeting and event into his cell phone calendar. Whenever we need to check a date or a time, he just pulls it out, opens the function, and the information is there. He doesn’t have to try to remember everything we have going on, and neither do I! How convenient! </span><br />
<span style="font-size: large;"></span><br />
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</span><br />
<span style="font-size: large;">Tim doesn’t have an iPhone or a Blackberry. He has a Samsung flip phone that is somewhat better than your basic freebee, but doesn’t require the add-on PDA plans or extra fees for apps. The calendar was included with the tools already loaded on the phone. You do have to know how to type text using a number pad, but he has managed that well enough for our purposes. He always sets the reminder for every event, so if something is coming up in the next hour, we know it.</span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">There are a couple of disadvantages to this system. The main problem is trying to schedule something when Tim is talking on the phone and can’t look at the calendar! Well, they do still manufacture paper and pens, so he just writes it down and checks when he hangs up. There is also the issue of forgetting the phone at home. That can happen with any planning device and Tim doesn’t forget often, but when he does, it’s back to the paper method. Thank God for sticky notes!</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-92119809421927403402010-04-21T08:42:00.000-07:002010-04-21T09:06:32.423-07:00Mental Effects of MS<span style="font-size: large;">Here is a short, comprehensive article on the psychological and cognitive effects of MS and how these effects affect relationships with family and friends. The points in this article help clarify why some problems occur and may help you direct your efforts when working with your family or your physician to determine why some problems occur.</span><br />
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<div style="text-align: center;"><span style="font-size: large;"><a href="http://www.msrc.co.uk/index.cfm?fuseaction=show&pageid=819">Psychosocial Impact of MS</a></span></div><div style="text-align: center;"><br />
</div><div style="text-align: left;"><span style="font-size: large;">Or, if you are fully aware of the mental effects of MS and just want a good laugh, check out the jokes on this website:</span></div><div align="left" style="text-align: center;"><br />
</div><div align="left" style="text-align: center;"><span style="font-size: large;"><a href="http://www.shof.msrcsites.co.uk/index.html">Squiffy's House of Fun and Laughter for Multiple Sclerosis</a></span></div>Unknownnoreply@blogger.com1tag:blogger.com,1999:blog-1603018060001884124.post-19707709047787591742010-04-14T18:19:00.000-07:002010-04-14T18:19:16.917-07:00What Are You Talking About?<span style="font-size: large;">Janet writes: We apologize for the lapse in posts lately. We’ve been very busy and the resulting chaos has caused us to lag behind. One result of this hectic schedule is that Tim’s brain has been working in overdrive lately. He has so many ideas swirling around that they keep him up at night. When he is telling me about an idea or opinion he has, the thoughts come so fast that he often leaves out a portion, and it’s usually an important part. I end up getting about 75% of what he is talking about, but that other 25%, the part that contains information critical to the main idea, is missing and causes me to either totally miss his point or just become really confused. </span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">It’s at this point that I will stop Tim and say “What are you talking about?” Tim will then stop and tell me, which usually clarifies his point and clears up my confusion. If I still don’t get it, I will tell him what I don’t understand and he will usually realize what fact it was that he left out. I then have 100% and can participate in the conversation without feeling like I’m driving in fog.</span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">I think many misunderstandings between couples happen because a little piece of information is left out. Big fights can occur when all that really needs to be done is to stop and say “What are you talking about?” When cognitive problems are at the root of the misunderstanding, it’s all the more important to stop and clarify the conversation. Conflict, frustration, and hurt feelings can all be avoided by following this simple little step.</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-41525767820530896322010-04-07T19:00:00.000-07:002010-04-07T19:00:35.330-07:00Questioning Ourselves<span style="font-size: large;">Tonight we were supposed to attend a class at our church. We thought we were signed up and we had received an email confirming our attendance, but when we arrived, no one was there to lead the class. We waited for a while and another person attempted to locate the leader of the class, but she found no one. We finally left, questioning ourselves on whether or not we had our information correct.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">This type of questioning happens frequently for people wrestling with the cognitive symptoms of MS. Did I hear that correctly? Did I write it down? Is this right? Where is that email, anyhow? It is perplexing to question yourself like this every day. You feel like your head is surrounded by a whirl of question marks that pound at your brain until you have a headache!</span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">Fortunately, it’s not always your cognitive meltdown causing the problem. Sometimes the rest of the world makes mistakes, forgets to write things down, and forgets to forward messages. This is very confusing, but it’s not your fault and not within your control. It’s comforting to know that maybe you are not the only one with a short circuit in the brain – and these people don’t even have MS!</span>Unknownnoreply@blogger.com2tag:blogger.com,1999:blog-1603018060001884124.post-52615249237473884032010-03-30T05:58:00.000-07:002010-03-30T05:58:47.980-07:00Driven to Exhaustion<span style="font-size: large;">Janet writes: We spent most of the day driving yesterday. First we drove a little over an hour west to pick up Tim’s parents. Then we drove three hours southeast to visit Tim’s aunt (his father’s sister). It was her birthday, so we went out to lunch and spent some time visiting. After that, we drove about 15 minutes further south to show Tim’s parents where I grew up, as they are not familiar with that part of the state. Finally, we drove back home, taking an alternate route due to road construction. Tim and I left the house at 7:00 a.m. and returned home at 8:30 p.m. Looong day, but very worth it so that Tim’s dad could see his sister.</span><br />
<span style="font-size: large;"></span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">This morning we were both exhausted and I could tell that Tim’s brain just wasn’t clicking into gear. He was very slow to get out of bed and a bit absent minded while getting ready to leave the house. Morning is usually Tim’s better time of day, so he only acts this way in the morning when he’s overdone it the day before. He will be fine after a large cup of coffee and some time spent with his men’s group from church.</span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">We usually try to manage our activities to prevent too much fatigue. Tim will hit is “wall” and he will stop to rest. When he is very involved in a project, however, he forgets to stop and wants to push through until it’s done. If I don’t make him stop, he ends up overtired the next day. Most of the time I am able to get him to rest, but on days like yesterday, that is not possible. When the day prevents rest breaks, we just have to plan on being tired the next day and doing what we can instead of what we feel we have to. </span><br />
<span style="font-size: large;"><br />
</span><br />
<span style="font-size: large;">We try not to have days like yesterday too often, but when we are helping our elderly parents, it’s not a bad thing. We will get over being tired, and we helped Tim’s aunt to have a happy birthday!</span>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-89859506205849336652010-03-27T18:19:00.000-07:002010-03-27T18:19:47.065-07:00Children with MS and Cognitive FunctionAll the people we know who have MS are adults, but this disease affects children too. Here's an interesting article on the affects of MS on the cognitive function of children and how it can affect their performance in school:<br />
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<div style="text-align: center;"><a href="http://www.usnews.com/health/family-health/articles/2008/05/12/multiple-sclerosis-affects-childrens-cognitive.html?PageNr=1">Multiple Sclerosis Affects Children's Cognitive Skills</a></div>Unknownnoreply@blogger.com0tag:blogger.com,1999:blog-1603018060001884124.post-28152299328212210302010-03-20T06:45:00.000-07:002010-03-20T06:45:24.400-07:00Finding the Files<span style="font-size: large;"><strong>Tim writes</strong>: My wife taught me how to make hard boiled eggs a couple of days ago. I know this isn’t that hard a task, but I have difficulty finding the files in my brain to complete the steps in the right order. If I would boil eggs every day, the steps would probably stick with me, but I don’t eat that many eggs!</span><br />
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<span style="font-size: large;"><strong>Janet writes</strong>: Tim talks about finding the files in his brain whenever he is learning something new. We acquired this term from a couple of different medical professionals who spoke to our local MS support group about cognitive symptoms and MS. Both speakers were answering questions about the cognitive symptoms of MS vs. the cognitive symptoms of Alzheimer’s disease. </span><br />
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<span style="font-size: large;">These speakers compared the brain to a library or a computer hard drive. When you have cognitive symptoms with MS, all your files are still intact on your hard drive. It becomes more difficult to open up </span><span style="font-size: large;">those files or store new files, but with time, practice, and adaptations like written reminders, you can still open those files and retrieve the data. Retrieval does become more difficult if cognitive symptoms advance, but they usually stay stable if your MS is managed overall. In Alzheimer’s disease, the files gradually become corrupted and you can’t open them. Advanced cognitive symptoms in MS can resemble Alzheimer’s, but the mechanisms involved in the progression of these diseases are not quite the same. </span><br />
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<span style="font-size: large;">Don’t spend a lot of time worrying about your MS cognitive symptoms turning into something similar to Alzheimer’s disease. Most people who have cognitive symptoms with MS stay fairly stable with their cognitive functioning. I am not sure how much research has been done comparing MS cognitive symptoms and Alzheimer’s disease, especially concerning primary or secondary progressive MS. If anyone would like to comment on this topic, we would really appreciate it!</span>Unknownnoreply@blogger.com1