Thoughts on the MS Cognitive Meltdown

Cognitive Meltdown Video

2011-01-07T15:07:00.000-08:00

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:

You Are Not Alone: How Tim and Janet Take On the Cognitive Meltdown of Multiple Sclerosis

Discombobulated

2010-10-12T05:07:00.000-07:00

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.

Lauren Parrott on Cognition and School

2010-09-22T04:27:00.000-07:00

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.

Living With Multiple Sclerosis - Insecurity Part 2

By the way, our workshop went very well. We hope to post some information from it when we have it organized.

Back to School?

2010-09-09T04:16:00.000-07:00

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.

Learning is Good for your Brain

Cognitive Meltdown Workshop This Weekend!

2010-09-07T18:24:00.000-07:00

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!

Cognitive Meltdown: How You, Your Family & Friends Face MS Together

Switch to Generic?

2010-08-18T04:18:00.000-07:00

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.

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.

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.

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.

Here’s a short, easy to understand article on the differences between brand name and generic medications:

Generic Vs. Brand Name Drugs

CCSVI and the Emotional Journey by Angela

2010-08-04T05:18:00.000-07:00

This YouTube video, CCSVI and the Emotional Journey, was produced by Angela, who crusades for CCSVI treatment through her website, http://www.flowers4ms.com/. 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.

Cognitive Meltdown Workshop

2010-07-31T15:26:00.000-07:00

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:

Cognitive Meltdown: How You, Your Family & Your Friends Face MS Together

Cognitive "Melt"Down

2010-07-08T07:31:00.000-07:00

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!

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.

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:

Multiple Sclerosis Association of America Cooling Program

Blueberries!

2010-06-29T05:55:00.000-07:00

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!
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!

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:

Top 10 Health Benefits of Blueberries

So have a happy summer and eat a whole lot of blueberries!

ILiveWithaDisability.com

2010-06-28T04:06:00.000-07:00

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:

ILiveWithaDisability.com

It's Not Easy

2010-06-14T08:49:00.000-07:00

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:

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!

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!

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!

World MS Day

2010-05-25T05:34:00.000-07:00

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.

Here's an eye-catching video that emphasizes how many people around you have MS. Thanks Lisa!

Beautiful Day

Change It Up

2010-05-18T10:41:00.000-07:00

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.

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.

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.

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!!!!

NEW Website

2010-05-11T19:15:00.000-07:00

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:

NEW Multiple Sclerosis Support Group Website

We Need to Read This Book!

2010-05-06T05:04:00.000-07:00

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:

The Talents of a Middle-Aged Brain

The Secret Life of the Grown-up Brain: The Surprising Talents of the Middle-Aged Mind

Mobile Calendar

2010-04-27T05:57:00.000-07:00

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!

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.

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!

Mental Effects of MS

2010-04-21T08:42:00.000-07:00

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.

Psychosocial Impact of MS

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:

Squiffy's House of Fun and Laughter for Multiple Sclerosis

What Are You Talking About?

2010-04-14T18:19:00.000-07:00

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.

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.

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.

Questioning Ourselves

2010-04-07T19:00:00.000-07:00

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.

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!

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!

Driven to Exhaustion

2010-03-30T05:58:00.000-07:00

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.

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.

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.

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!

Children with MS and Cognitive Function

2010-03-27T18:19:00.000-07:00

All 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:

Multiple Sclerosis Affects Children's Cognitive Skills

Finding the Files

2010-03-20T06:45:00.000-07:00

Tim writes: 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!

Janet writes: 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.

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 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.

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!

Fish Oil Problem

2010-03-15T12:12:00.000-07:00

Janet writes: Stocked up on vitamins again Saturday. All the doctors Tim and I have encountered recently have pushed the virtues of Vitamin D and Omega-3 for MS. Take Vitamin D to prevent MS. Take Vitamin D to help MS symptoms. Take Omega-3 to help your cognitive skills. When we heard how much Vitamin D and Omega-3 you’re supposed to take for MS, we found that we were falling a little short. One doctor recommended 5000 mg of Omega-3 per day. Tim was taking 1200 mg. Ooops! He had better pound down a few more.

Here is what the NMSS has to say about Omega 3:

The Omega-3 Factor

Fish oil, the primary source of Omega-3, comes in gel cap form these days. Not like when my parents were kids and were forced to take cod liver oil. I’ve never tried the stuff, but I’ve heard it’s terrible. Anyway, I’d much rather take gel caps, but I had a little problem the other day. Omega-3 gel caps are quite huge, over an inch long, and I take four per day, usually two at a time. This time, however, I somehow managed to take two at exactly the same time – they stuck together and slid down my throat joined side by side. Ouch!!! I felt like I had a boulder stuck by my voice box. It took me ten minutes to get them down. Talk about a sore throat!

I still take four Omega-3 gel caps every day. One at a time!

MS Awareness Week

2010-03-11T06:33:00.000-08:00

So, this is the official MS Awareness Week and we're all wearing our orange shirts. According to the National Multiple Sclerosis Society, MS affects about 2.1 million people worldwide. In our lovely state of Wisconsin, it affects about 1 in 500 people. Around here, if you don't have MS you know someone who does.

About half of people with MS experience cognitive symptoms - at least, this is the current estimate by the MS gurus. Cognitive symptoms can include short term memory loss, difficulty finding the words you want to say, difficulty processing information quickly, and problems with executive functions such as problem solving and sequencing. Most people can adapt to these symptoms by slowing down, simplifying daily activities, and using memory aids. Staying in shape and managing symptoms of depression can help lessen the effects of these cognitive symptoms.

That's it for our shameless plug for MS Awareness Week. We have the Walk MS event coming up in about a month and Tim is raising money online. Here's his page:

Tim's MS Walk Page

Let's hope it doesn't rain...again!

Out of It

2010-03-07T05:26:00.000-08:00

Janet writes: Tim had a bad night last night. It was the first night in a long time that he could not sleep. He said that a million thoughts rushed into his head and he couldn’t get them to settle down. This morning he is tired and can’t process his thoughts to organize himself for the day. He came in the kitchen and just stood there for a couple of minutes. Then he disappeared into the bedroom, not coming out until I felt the need to check on him. He said “I’m just out of it.”

When Tim is restless like this, I usually end up waking up and he usually ends up talking to me about all those thoughts. Afterward, he falls asleep and, if I’m lucky, I do too. This all happens at 2 o’clock in the morning, of course. Anyone reading this that has MS can probably relate to this little scenario. Insomnia is a common symptom of MS.

Tim says that he seems to get this way the week before his Tysabri infusion. A little out of it, a little more disorganized. His memory seems to slip more and it takes him a longer time to sort out and process information. After his infusion, he is better again. Does anyone else have this type of thing happen. Can the effects of Tysabri “wear off”?

Tim will be fine today once he gets going. He will probably have to pound couple cups of coffee, however, so that he doesn’t fall asleep in church!

Jeffrey Gingold Article

2010-03-02T10:43:00.000-08:00

If you visit the Staying Smart website sponsored by MS Trust, you will see a series of videos that show a discussion of MS cognitive symptoms between Jeffrey Gingold and people with MS from all over the UK. Mr. Gingold has written a wonderful article about his experience that now appears on the MS Trust website. It's worth the 10 minute read, so check it out here:

Staying Smart and Staying Afloat

The Staying Smart website has numerous resources for people experiencing the cognitive symptoms of MS. If you have never visited this website, go there now:

Staying Smart

More Exercise For Your Brain

2010-02-25T05:33:00.000-08:00

Janet writes: Ok, this article made me want to go on a vegan diet and walk 5 miles. A long term Swedish study has linked a higher Body Mass Index in middle age to lower general cognitive ability and a steeper decline over time. Here’s the link (thanks to Charles Violet).

http://www.medicalnewstoday.com/articles/180246.php

Here’s my question, though. Does obesity cause cognitive decline or does cognitive decline cause obesity? Couldn’t this work both ways? The inactivity that leads to obesity causes cardiovascular problems that could lead to cognitive decline. On the flip side, cognitive decline could lead to decreased activity levels that could cause obesity. While I realize the first one is probably the cause for most people, I could see it working both ways, especially if a person has an existing medical condition such as MS.

Tim and I probably won’t go on a vegan diet. But we can certainly turn off the TV and get moving!

Exercise For Your Brain

2010-02-19T05:17:00.000-08:00

Janet writes: Tim has had difficulty in the brain department this week. He has been more forgetful and has needed notes and lists for most things. Now we know why. He has been slacking on his Wii Fit workouts! Here’s an article posted on DNA about the benefits of exercise on brain function for people with MS. According to this research study, MS patients with a higher level of fitness perform better on tests of mental processing speed. It makes sense – more blood to your brain, easier time thinking things through. (Thanks to Kath Ibbetson for posting this link!)

Exercise has protective effect on brains of multiple sclerosis patients

We got the Wii so Tim could do both physical and cognitive exercise at his own pace at home. He can’t handle the fast pace at the Y, and walking isn’t always easy on icy sidewalks. When we exercise regularly, he does pretty well at keeping up with our daily schedule. This week, though, he’s been my chauffer to doctor’s appointments and has been our home remodeling expert as he’s building out our basement. He has had no time or energy for Wii, and the result is a decline in his cognitive status. It's not a permanent thing. He just needs to pump some blood to his brain.

I guess it’s time to get off the couch and back at Wii Fit. Advanced Hula Hoop, here we come!

Time To Learn

2010-02-17T12:14:00.001-08:00

Janet writes: The spring 2010 issue of Momentum has an interesting article on memory loss, starting on p. 38. It goes into a lot of detail about the different types of memory and what memory functions are involved for most people with MS. The article gives an in depth description about why people with MS take longer to learn new information.

This article reports that, when given extra time, people with MS are able to learn and remember tasks just as well as people without MS. They just perform slower. The article poses the question “If students in school who have learning difficulties can have extended time, why can’t adults with learning difficulties have the same accommodations on the job?” (Genova, p. 41).

Tim has experienced this problem in the past. He had jobs that had deadline requirements and projects that required a lot of input from a lot of other people. He could not keep up with the demand. I used to hear Tim say “I can’t do it!” quite often. Through trial and error and a lot of encouragement from me, Tim has found that he can do quite a few things, in fact, but it takes him a longer period of time to learn a new process. He also needs an environment with no distractions when he is learning something new. Given these two accommodations, however, he has managed to learn quite a few things. I don’t hear “I can’t” as much anymore. Now I hear “I need more time” and “Make that #@$% dog be quiet!” (Tim loves his dog but his bark is very loud.) (The dog’s bark, not Tim’s.)

I think this is an important point to remember if you are trying to survive the working world with cognitive symptoms resulting from MS. More time, rest breaks, and extended deadlines might be your key to keeping your job. I realize this is dependent on having an employer who is willing to work with you and will not discriminate based on your disability, as employers are supposed to do. However, these accommodations are quite easy and, for the most part, inexpensive for companies to make. In the right environment, a little self advocacy might not hurt. In the wrong environment…well, if your employer is ready to boot you out the door because of your MS, it’s probably time to find a new job anyway. And maybe a good lawyer…

Sometimes It’s Not Just You

2010-02-15T09:25:00.000-08:00

Janet writes: We are having one of those days today. A dragging, slow moving, unmotivated, can’t think of anything day. We just want to go back to bed and sleep! Tim can’t think about much of anything and neither can I. Uuugh!

The consolation prize is…neither can anyone else. Everyone I have talked to today feels the same way: tired, sluggish, unmotivated. It seems to be the general atmosphere.

Cognitive symptoms can really rear up on days like this. If you have this kind of day, don’t push yourself to get things done. You will probably just get frustrated and give up. Take it easy and try again tomorrow, when that “uuugh” feeling is gone and you have more energy. Your overall wellbeing will influence how you think.

The other people around you? Well, they will understand. They feel the same way, after all. The general comment I hear on days like this is “It must be the weather!”

Empathy

2010-02-08T17:31:00.000-08:00

Janet writes: I read this blog entry today and it touched a nerve: Tears of Hope and Passionate Hate. The author writes about wishing for his wife to be healed and hating the MS that has taken her abilities away. I know how he feels.

Tim and I met in 2005. To me, he has always had MS. He has always had trouble finding words and remembering things. He has always walked a little funny. He has always complained of muscle cramps in his legs and has always had a little trouble feeling things with his left hand. To me, he has always been this way.

But I often wonder what Tim was like before MS. How did he walk? How did he think? What could he do then that he can’t do now? What if he didn’t have to struggle with this disease? Tim is my man and I will always love him, MS or no MS. But I do wonder, what if there was no MS?

I can relate to how this blog author feels, for I also hate MS and I also pray for effective treatments to help my husband. Maybe someday, with the efforts of many who research and promote knowledge of MS, my prayers will be answered “yes”.

Information Please?

2010-02-06T06:33:00.000-08:00

Janet writes: I found this question and answer thread on HealthCentral.com and it reminded me that people newly diagnosed with MS just don’t receive enough information from their physicians. Doctors still seem to run around the cognitive symptoms MS can cause. I don’t know if these doctors are unaware of how MS affects cognition, or if they just don’t want to talk about it with patients because it’s a difficult topic, or a little of both? A good neurologist will make sure that new MS patients receive all the information they need to take care of themselves, or at least the resource information brochures for the NMSS and local support groups.

MultipleSclerosisCentral.com

Fortunately, this woman’s question was answered by people experiencing the same symptoms. I think they were able to reassure her that memory problems can be a part of MS and there are many ways to compensate.

Too Tired to Think

2010-02-02T19:11:00.000-08:00

Janet writes: Tim and I have both been really tired lately. I don’t know if it’s the weather, the fact that it’s winter in Wisconsin, or just too much to do, but we’ve both been exhausted. When Tim gets tired, his cognitive symptoms become more noticeable. He gets stuck on words more often and he has trouble finishing sentences sometimes. He forgets to write things down and then forgets to do those things, because he didn’t write them down. He gets very frustrated and crabby when this happens. If I am tired also, I can’t help much, and then we both end up crabby. Not fun at our house – time for a vacation!

Anyone who has MS knows that fatigue is the enemy, and it will make all your other symptoms flare. This is true for cognitive symptoms as well as physical ones. Extreme fatigue can make your brain feel like mush. It’s really important to get enough rest and keep your activity level within manageable limits so your symptoms stay under control.

Here are a few tips to help you:

- Alternate strenuous tasks with sedentary ones. For example, vacuum the living room, then sit and update the checkbook. Keep alternating heavy and light jobs throughout your day.

- Find different way to do heavy jobs. Slide those heavy boxes across the floor instead of picking them up and carrying them. Use long handled tools when cleaning. Sit down to prepare meals. There are lots of ways to adapt.

- Rest before you are tired. Taking short rest breaks between tasks will help you last longer and do more.

- When you feel like you are done, be done. Don’t try to push yourself past that fatigue point, or you won’t be getting out of bed the next day.

- Finally, if you are just too tired to function on a given day, take the day off. Do easy things that don’t require a lot of energy and try for your normal routine the next day.

Hopefully these simple tips will help you get through those tired days. As for Tim and I, well, I think we just need spring!

Easy to Understand Instructions

2010-01-29T04:28:00.000-08:00

Here's a website we stumbled across that has some very easy to understand instructions for using Skype. It also has articles about cellphones, Nintendo Wii, and webcams. While this is a site from the UK is designed for grandparents, anyone who has difficulty understanding technology will appreciate this article page.

BeGrand.net

While everyone thinks that people with disabilities should just be able to "use technology" to compensate for their difficulties, we have found that cognitive issues will interfere with your ability to learn how to use technology. If it wasn't in your brain before, it's more difficult to get it in there now. We very much appreciate sites like this one that make instructions easy to understand and learn.

Email Yourself

2010-01-26T15:16:00.000-08:00

Janet writes: Tim and I both have to go through some extra effort to remember everything we have to do in a day. We are busy people, have family members sharing vehicles, and we just can’t keep track of everything that’s going on. Add Tim’s MS into the mix and some of our days are scheduling disasters. When we found out how Tim’s cognitive issues were impacting his memory, we started searching for easy ways to adapt, and one of the easiest ways is email.

When Tim needs to remember something important that is happening later in the day, he writes it on our dry erase board and our calendar, enters it into his cell phone calendar, and then, if it’s really important, emails it to himself. He will either send a message from his phone to his email or ask me to send him an email reminder. This might seem like a lot of extra effort, but when an event Tim has to remember flies out of his memory in the time it takes to walk from the living room to the kitchen, all these steps are really important. If Tim walks past our calendar, he remembers what he has to do. If he checks his cell phone, he remembers what to do. If he checks his email, he remembers again what he has to do. After three or four repetitions with all these reminders, that event seeps into Tim’s memory and he is able to remember it without the reminders. These techniques act as the rehearsal of information that most people do in their heads when they want to remember something. Repetition, repetition, repetition.

I have my own memory problems, due to a loaded schedule and some hereditary scatterbrainedness (is that a word?) [Yup My Lovely Wife :) Tim writes lol], so I have begun to email myself as well. I find this technique very useful when I’m at home and need to remember something I have to do at work, or vice versa. I just send emails between my home and work accounts. When I open my email, I have that “oh yeah” moment when I receive the reminder. It’s a great supplement to the wall calendar and all my “sticky notes to self” on my desk.

Try some of these techniques if you are having difficulty using one reminder method. And please ignore any smart comments Tim has about my being a scatterbrain!

In Sickness and In Health

2010-01-23T11:13:00.000-08:00

Janet writes: There is an excellent thread posted on the MS World message boards about how to adjust to MS in a new relationship. The original poster asked for advice regarding his recent marriage and his wife’s new diagnosis of MS. Many people in long term relationships who have dealt with MS for years responded and actually help the gentleman talk his way through the ups and downs of his situation – an online counseling session, really!

Reading this thread made me realize how important it is to be up front with each other when a diagnosis of MS comes into your relationship. Most of the people who posted replies to this post have solid, long term relationships. Some knew about the MS before committing to the relationship. Most take their marriage vows seriously – “in sickness and in health” – and whatever comes with it. I read so many threads on these message boards that talk about spouses and significant others not being able to deal with the disease and bailing on their marriages or relationships, so this thread was really refreshing to read.

Tim told me about his MS on our first date. He didn’t want to get into a relationship with me, only to have me walk away once I heard the words “multiple sclerosis”. He was relieved to find out that I already knew about MS and what its potential effects were. That being said, I did have to seriously consider what I was getting into for about a month before I committed my heart to Tim. I have my own health problems and I wasn’t sure if I was up for what could lay in our futures. I did finally come to the conclusion, however, that the man was more important than the disease. We have now been married a little over two years.

We don’t have it easy. Tim went through a change in doctors and several trials of medications before stabilizing on Tysabri. My health is fragile and that is affecting my ability to work right now, so money is tight. Add three college age children and a new grandson into the mix and we pretty much live in chaos. What keeps us going is our faith in God and our love and respect for each other. With those two things, plus open, honest communication between the two of us, we find that we can deal with a lot of things that neither one of us could deal with alone.

So if you are experiencing difficulty in your relationship due to the wonderful world of MS, please seek out your local MS support group. You are likely to find couples there who know how to face this disease head on and are able to keep their relationships solid through it all. If your problems are heading you to a break-up, please find some counseling help as well. Your relationship is worth it!

To read the thread I did, log in to MS World, go to the Relationships and Carepartnering message board, and click on the thread titled Recently married – wife diagnosed with MS – future? For marriage and relationship advice that will make you bust a gut laughing, go to Laugh Your Way to a Better Marriage.

Panel Discussion on Relationships and Families

2010-01-19T07:42:00.000-08:00

Here is an audio webcast from Everyday Health of a panel discussion on MS and family relationships. This discussion goes into a lot of detail about how children and parents deal with the disease and is quite thorough. It is about 50 minutes long, so plan a chunk of time to listen.

How MS Affects Relationships and Families

Word Search

2010-01-11T18:22:00.000-08:00

Janet writes: Tim’s daughter has been spending her winter break from college completing word search puzzles. Tim has just been playing “word search” – searching for the right word to say. Repeatedly over the past week, Tim has substituted words for the ones he wanted, confusing all of us listening to him. He doesn’t speak jumbled sentences or gibberish, but just substitutes a single word, usually the name of something, at a crucial point in a conversation. The latest was this morning, when he came back from the hardware store with a couple of new “magazines” to hang on the wall. After I replied “What are you talking about?” he corrected himself and said “I mean calendars”. Since all of us in the house know that he does this we all stop and ask what he means, and he is able to correct what he has said before it becomes an issue.

We have had quite a bit of stress in our household recently and Tim has been feeling the effects of this stress. While he has complained of headaches and fatigue, the most noticeable effect of this stress is Tim’s increased word finding problems. Stress can magnify all cognitive symptoms, including short term memory loss, word finding difficulties, problems solving and decision making skills, as well as others. Remove the stress and the symptoms improve. This is why all those doctors preach “reduce your stress” to MS patients. Here’s what the National MS Society has to say about reducing stress.

Tim, of course, will deny having word finding problems if you ask him. He says that he has his personal dictionary and spell checker right over there. Of course, he is pointing at me. Hmmm. I don’t really think he want me putting words in his mouth………

Take Time to Listen

2010-01-08T19:54:00.000-08:00

Tim writes: It is so frustrating when support partners interrupt you and think they know what you’re going to say. They think they can read your mind, but they have no idea what you’re thinking or feeling. They don’t want to listen to you because they think they know what you are going to say. This is BS. I just shut down and stop talking. I feel like a dummy. I’m not, please just listen. You may learn something.

We need time and patience. It’s hard enough sometimes to keep things straight. If you don’t have the time, don’t waste our time. We have better things to do than to feel like crap.

Invisible Symptoms

2010-01-06T05:47:00.000-08:00

Here is an easy to read article from The Invisible Disabilities Advocate about the invisible symptoms of MS. We deal with this issue all the time, since Tim's MS symptoms are hard to spot when you first meet him. If you are new to MS or are having difficulty explaining your invisible symptoms to your family and friends, this article may give you some help.

Multiple What?

Untangling the Perplexities of Multiple Sclerosis

Dragon Naturally Speaking, Session One

2010-01-02T07:20:00.000-08:00

Tim writes: I started using Dragon Naturally Speaking today. My first voice training session went something like this:

First I spoke into the microphone to turn the program on.

“Microphone on.”

The program turned on. The little microphone turns green. I played with the on/off function by speaking the off command.

“Microphone off.”

The program turned off. The little microphone turns red. I turned it on again.

“Microphone on.”

I wanted to test if the program picked up my voice properly, so when the microphone was on, I said:

“Today is the day to start something new.”

The program wrote: Today is the day to start something no.

I said “Delete”. It didn’t work.

I said “Back up” The program wrote: backup.

I said “Delete line”. I said this twice and the line disappeared. I tried again.

“Today is the day to start something new.” The program wrote: Today is the day to start something no.

Grrrrowl! It did the same thing! I said “This program is a pain in the A#S.”

The program wrote: program was a pain AMASS.

I tried again. I said a few more things that the program wrote as gibberish. Then I said:

“Janet is the love of my life. She brightens my heart every day.”

The program wrote: Janet is the love of my life. She prisons my heart every day.

Wait! I didn’t say that!

This is pretty much how my session went. Whatever I said, the program wrote something different. Janet was laughing hysterically behind me and the kids wondered what the heck was going on. I did get the program to write the following lines correctly:

My children call me Dick.

I think you work for our government doing healthcare bills.

I am a brain scientist.

I will be using the accuracy tool as soon as our house quiets down enough to let me. (That might be the year 2015.) To end this little narrative of Dragon Naturally Speaking, Session One, I shall share this program’s version of the alphabet:

ABCDEFGHIJKL on the net and all PRSTUVWXYZ.

MS Trust Staying Smart

2010-01-01T13:32:00.000-08:00

This is a great website sponsored by the Multiple Sclerosis Trust and Royal Holloway, University of London. Both organizations are based in the UK and have produced a comprehensive, easy to follow website about cognitive issues in multiple sclerosis. People who have cognitive problems and their support partners should take a look at this website and the videos featuring Jeff Gingold. There is a lot of really helpful information here!

MS Trust Staying Smart

Questions

2009-12-29T19:23:00.000-08:00

Janet writes: When we search for interesting material to link to on this blog, we sometimes come across things that cause more questions than answers. I saw one article that recommended physical therapy for your cognitive problems? Well, I suppose, if you go to the PT who does it all, but most of the time you would see an occupational therapist (OT) or a speech and language pathologist (SLP) for cognitive issues. I have included links here if you don’t know the differences between the therapies, since I get this question all the time. (I am an OT.) Go to these sites and look for the links that say information for consumers.

Here’s another question. I read a brief article on Web MD entitled Multiple Sclerosis: MS Related Thinking Problems. This article states that two of the early signs of cognitive problems in MS are difficulty finding words and trouble remembering tasks, which is true. It also states that a person’s doctor will make sure that these problems aren’t caused by something other than MS, like normal aging, medication, or depression. My question is, considering that depression is also a symptom of MS and most people with MS take a cabinet full of medications, how do you separate these symptoms from the MS symptoms? Our experience with Tim’s cognitive issues was that it took about a year and much tweaking of anti-depressants before we really could tell what symptoms were caused by depression and what was truly cognitive. It just wasn’t an easy process. The description of cognitive function on the National Multiple Sclerosis Society website goes a little more in depth on the standard description – I think most other websites get it from here.

Which leads me to a third question. When I read all these articles on cognitive symptoms and MS, they all state that about 50% of people with MS have cognitive symptoms. (Please say this with a stuffy, authoritative voice.) This statistic comes from neuropsychological studies, but my question is how many people with MS actually go through neuropsychological testing? A thorough neuropsychological test will reveal cognitive limitations, even mild ones. A thorough neuropsychological test also takes a 4 to 8 hour session with a series of health professionals (after which you are so tired that you can’t even remember your own name) and costs four figures in the US (good-bye savings account!). I think the key word in that statement is about.

Well, here’s one last question. When is Tim going to write something again? That’s a very good question! Tim does not like to write because he is a terrible speller and types slowly. Just before Christmas we purchased a copy of Dragon Naturally Speaking for him to try. As soon as he masters using this program, he will try it out with another blog entry. Stay tuned…

I'm Not Going To Remember All Those Little Buttons!

2009-12-27T12:09:00.000-08:00

Janet writes: For quite a while now, Tim and I have had an issue with exercise. We want to be able to exercise together, but we exercise at different levels of intensity and in different styles. Tim has more time to exercise, but has to watch his body temperature and endurance levels. I can usually tolerate a higher intensity level when I exercise, but I don’t have as much time. To complicate matters, I am now having health problems myself which are limiting my ability to exercise.

Anyway, our solution to this exercise dilemma was to get ourselves a Wii. You’ve seen all the articles about how people who haven’t been able to exercise for a gazillion years are suddenly leaping out of their wheelchairs to play in Wii bowling tournaments sponsored by benevolent rehab centers? Well, this is not us, but we did try out my daughter’s Wii Fit once and liked it, so she helped us buy ourselves one for Christmas. Now, then, comes the process of setting it up.

When you have cognitive issues, it is not really the day to day operations of familiar electronics that cause you problems. No, it’s setting up and learning how to operate new gadgets that creates panic. Tim opened the box and immediately said “I’m not going to remember all those little buttons!” That is what instruction manuals are for.

What? Read instruction manuals? Yes, Tim reads instruction manuals, and then he gives them to me to read to him while he sets up the electronic gadget. Once he is done with this process, he usually remembers how the device operates and can reset it again if he needs to. If he can’t remember how, he can at least remember where the instruction manual is so he can look it up.

Uh, that would be in the filing cabinet in the instruction manual drawer…right?

Actually, we have learned to keep instruction manuals, warranty cards, and spare parts together in the plastic bag they came in. These bags do go in a special drawer in our filing cabinet, so we know right where to look when we need them. We saw this on TV the other day and they took it a step further by placing everything in zip lock bags and labeling it with black permanent marker.

That would make things easier to find. I’ll have to make a note to upgrade our instruction manual drawer. I’ll get right on that, just as soon as I’m done reading about all these little buttons…..

Tim's Rant

2009-12-22T20:55:00.000-08:00

Janet writes: At our local MS support group this evening, the discussion once again turned to cognitive issues and how family members just do not understand the cognitive problems a person with MS might be experiencing. We were discussing this topic in the car on the way home and Tim became rather worked up about the subject. So, here is Tim’s Rant:

I have MS. I am not stupid.
Don’t talk loud to me. I am not deaf.
You might need to talk slowly.
Writing it down is even better.

What Tim is saying here is, treat people who have cognitive issues with respect. Don’t talk down to them or treat them like children. Instead, help them adapt so they can function. They are people, after all.

Get A Word In

2009-12-17T10:28:00.000-08:00

Janet writes:

I keep cutting Tim off when he’s talking to me and he’s getting mad at me. He starts telling me something and the second I think I know what he is talking about, I will respond. This really doesn’t have anything to do with MS or cognitive issues. It actually has everything to do with the fact that we are married and I just think that I know what he is going to say. Of course, I don’t always know this, so I end up cutting him off and he gets mad. I should know better.

This brings up a very good point for all of you support people right before the holidays. Don’t let your loved ones with cognitive issues get shut out of family conversations. If you see your loved one having difficulty getting a word in, direct the conversation toward them and make sure he or she has adequate time to speak. If your loved one is stuck on a word or has just said something that doesn’t make sense, try to help him or her clarify points rather than just putting up with those awkward, puzzled stares from the cousins. Also, if your loved one is totally shut out of the party or is sitting off alone, make sure he or she is included, at least for as long as he/she can tolerate. Remember that cognitive issues can be just as fatiguing as physical problems, so don’t push your loved one’s limits.

Holidays are tiring and stressful, but also fun and a great time to reconnect with family. Make sure your loved one with cognitive issues is fully included in your holiday get-togethers. As for Tim and I, well, we’ll just keep working on that marriage thing….

Now Here's a Brave Support Person!

2009-12-12T19:32:00.000-08:00

This video on YouTube shows a husband talking about his wife having MS. Of course, she is the one interviewing him and recording the interview! Now he is one brave man! This video is a good example of some of the issues a couple can encounter when one spouse has MS and how a good relationship will help that couple through the difficult times.

SUSANLOVEALOTBEAR - her husband talks about her having MS:

Here is Susan's YouTube page:

http://www.youtube.com/user/SUSANLOVEALOTBEAR

Surviving Wally World

2009-12-06T12:28:00.000-08:00

Janet writes: Ok, it’s Christmas shopping season, and sooner or later we will all have to make that inevitable trip to…Wal-Mart. I cringe at the thought. Oh, I have nothing against Wal-Mart as a store or a business. (We call it Wally World at work.) They usually have what I want and they almost always have the best price around. The employees are friendly or at least civil and I have never had trouble returning merchandise or using the bathroom. No, my beef is…Wal-Mart. Big, bright, giant, overstuffed, Wal-Mart.

The entrance to this store is misleading. You think you are ok. The carts are right there – scooters too – and a friendly person greets you. “Welcome to Wal-Mart”. Then you walk past the specials display and into the glare. No one can say this store isn’t well lit. The lights are incredibly bright and they reflect off the highly polished white floor. The isles of things are usually filled with extra isles of things and cross isles of things and special displays of more things and pretty soon you are surrounded by so many things that you forgot what things you were looking for in the first place!

All the “things” are actually manageable – if you go at midnight. Most of us go during normal business hours, however, so to the lights and isles and things you must add people. Many, many people. People going fast, people going slow, people standing still, people stopping abruptly right in front of you, and people standing right in front of the “thing” that you came for and not moving! Try not to scream, now! That’s very rude.

Anyone with cognitive issues knows that about five minutes of this is all it takes to give you one whopping headache. In fact, five minutes of this is enough to give anybody a whopping headache, with or without cognitive issues.

I have vertigo of unknown origin (they call it a migraine disorder), and between that and Tim’s MS, we make quite the pair in Wal-Mart. I spend at least ten minutes, sometimes more, wandering around trying to orient myself while I read signs and attempt to locate the “things” we came for, and Tim just follows with the cart because he doesn’t want to attempt to deal with it. After wasting a sizable amount of time, one of us usually figures out where we need to go and we get to the correct location in the store. It’s exhausting and frustrating. Yes, we do save money. It helps us pay for all the Advil we take after we get home.

I actually do enjoy shopping at Wal-Mart. Wal-Mart.com, that is.

Cell Phone Reminders

2009-12-03T19:47:00.000-08:00

Janet writes: We are not the highest tech people around. For example, we didn’t opt for the free phones with our cell phone plan, but we paid under $30 each. Needless to say, we don’t have lots of fancy “apps” we can use when we don’t feel like using a phone for talking. (Wait! Isn’t that what it’s for? Oh, never mind.) We have, however, figured out some simple ways to use our cell phones as memory aids, using the tools and functions that we pay for with our plan.

Of course, both of our phones have built in calendar functions, found within the Tool menus. Tim enters everything he has to do in his and sets the alarm with certain ring tones to remind him anywhere from 30 minutes to a couple of hours before each item. He even has the alarm set to match the ring tone of the person that the appointment or event corresponds to. For example, if he has to pick me up from work, he will set the alarm to ring 15 minutes ahead of time and he’ll hear Kiss The Girl, which is my ring tone. If he has to take his daughter to a doctor’s appointment, he’ll hear We Are Family an hour before the appointment time.

We use text messages quite a bit to remind each other about things we need to do as well. We will text reminders to each other throughout the day. We both find these easier to retrieve than voice mail, and the written text is easy to refer back to. We also text reminders to our own or each other’s email accounts. We have our email accounts set up in our address books so we can send texts at any time. A text from a cell phone looks like this as an email message (phone number is blocked out):

[SMS Message from a Cellcom subscriber]

From: ********** [**********@cellcom.quiktxt.com]

To: pinnut@netnet.net

Cc:

Subject: [SMS Message from a Cellcom subscriber]

Meeting at school 7:40 Friday

We have camera phones, so we can add pictures to these text messages if we want to. In my phone, I take the picture, and then follow the proper function series to add text and send to the email address I want. It comes through looking like this:

New Multimedia Message

From: 9206806316 [9206806316@pics.cellcom.com]

To: pinnut@netnet.net

Cc:

Subject: New Multimedia Message

________________________________________

Message:

Feed the dog at noon

Tim has a video function on his camera, so he can film video clips and email those. Sorry, I am not high tech enough to figure out how to clip the link into this blog to show you the sample video! (I think we need an upgraded version of Quicktime.)

These little reminders do not require an iPhone or a Blackberry or another fancy gadget. If you have multimedia functions or even just text messaging on your phone, you can use these easy techniques. Of course, if you are still using the phone with the cord attached to the wall, then you might want to just write a note…

About Great Websites!

2009-11-29T16:41:00.000-08:00

Sometimes you find the best stuff on the easiest websites! Here's a really good, easy to read article titled Marriage and MS by Julie Stachowiak, PhD from About.com. Pay special attention to the paragraphs headed Information and Understanding, and Educating Families, Friends and Co-Workers. You will find some tidbits of information relavant to those invisible cognitive symptoms.

When Sparks Fly

2009-11-24T14:35:00.000-08:00

Janet writes: We have a lot of strange arguments in our house. If you sit and listen to them, you can see why they happen. They all start because one of us forgets to say that key sentence, write an important reminder on the calendar, or clearly state his or her point in a conversation. Tim and I have more or less learned how to stop, back up, and correct the errors when this happens. We can make the argument dissolve very quickly when we do this. By the way, I am responsible for just as many of these errors as Tim, so don’t just blame the person with MS!

Our kids, however, are a different story. Tim and his daughter especially get into some whopping rows over the littlest things, and I just sit back and shake my head when I listen to them because I know that the whole argument could be avoided by a little clarification. We have been educating our kids about how MS effects cognitive functions and they appear to be slowly “getting it”, but I never really know how much they are tuning in or how much they remember when it comes to applying this information in the heat of a good fight.

Tim and I have learned a few very helpful techniques when having discussions about important, emotional topics between the two of us. These techniques help us avoid the whole weird argument thing.

1. Have your discussion in a quiet place where you will not be interrupted. Lock the door, turn off the cell phone – hop in the car and drive off if you have too. Eliminating outside distractions will help you both focus on what is being said and if it is being said correctly. Tim and I have found this technique to be the most important one.

2. Be patient when talking and don’t interrupt. The person with MS may not be able to finish his or her thought if you interrupt them, and may lose the thought completely. This will just make them angry and more willing to spar.

3. If something doesn’t sound right, it often isn’t. Ask for clarification. Don’t be afraid to do this. Sometimes a person with MS will say one wrong word in a sentence and it will change the entire meaning of what they are saying. Repeating the sentence often will help that person catch their error.

We have had good luck using these techniques to discuss our issues, and we have slowly been working on teaching our kids these same techniques. (They are teenagers.) We hope that they will be able to use these techniques also, and we hope that anyone reading will put these techniques to some good use.

Infusion Day

2009-11-22T07:28:00.000-08:00

Tim writes: Here is a photo of me getting a Tysabri infusion. The toughest part is the nurses sticking me with the needle. After that, I chill and sit back, talk with others, watch TV or use my computer, sometimes read a book. The treatment takes 2 hrs or a little longer. Bellen Infusion Center has great personnel and they offer you a soda or water.

A Tysabri infusion is nothing to sweat – you are under good care. Much better than the root canal I had on Monday!

I have no idea if Tysabri is helping me with my cognition, but it is helping me with my mobility and pain. In my personal opinion, I was headed for secondary progressive MS before starting this medication. I feel I am not progressing now. I am not a medical doctor and can’t really tell you if this is the case or not, this is just how I feel.

Thanks to Greg for taking this picture!

Lauren Parrott Video

2009-11-20T05:23:00.000-08:00

While browsing YouTube, we came across Lauren Parrott, a young woman with MS who creates straightforward YouTube videos about MS topics. Her video about MS cognitive issues is easy to understand and relate to. Tim's comment after watching was "so I'm not going crazy!". If you would like to view more of her material, you can access it through her website, http://www.laurenparrott.com/.

Slow Down!

2009-11-17T08:08:00.000-08:00

Janet writes: This morning we were watching news stories on the H1N1 virus. TV news has changed since we were kids. Journalists used to have more time to present their stories and they were easier to follow. Today stories are presented in 1 to 30 second time slots, with very quick snippets of reporting and video. You really have to pay close attention to understand the central information of the story.

Anyway, the first story reported on the increased availability of the H1N1 vaccine in our area, expanding eligibility to people up to age 64 with chronic medical conditions. This would make Tim eligible to receive the vaccine, which is what he has been waiting for. While we were still focused on this story, the anchorwoman segwayed right into the second story about a local man who developed complications from H1N1 and was hospitalized for pneumonia. Tim had an extremely difficult time following this story and thought the reporter said that the man developed the complications from the H1N1 vaccine. I had to clarify the story for him after the fact. Tim started sputtering about the accuracy of news reporting, as he often does, but I stopped his rant and assured him that the story was accurate, just presented too quickly. Tim was convinced that the anchorwoman missed some key words in her report that prevented the story from being accurate.

Our news episode this morning is a classic example of the difficulty that cognitive problems caused by MS can create with receiving and processing information. A person with MS who has these cognitive issues is perfectly capable of receiving, processing, and understanding information. Due to the nerve damage along these pathways that the MS has caused, they require extra processing time to do it.

What does this mean? Easy – slow down! Our world has become a whirl of snippets of information, presented in flashes that your brain has to snatch and process in seconds as you run from place to place, meeting the demands of your impossible schedule. MS prevents a person from living this kind of life style and support people, or anyone else, shouldn’t expect a person with MS to do so.

Here are some easy ways to adapt to our insane world when you have processing speed issues caused by MS:

1. When speaking to other people, eliminate outside distractions. Speak at a normal rate, don’t rush. Support partners, you don’t have to slow down abnormally or speak loudly, like some people do when they speak to anyone with a disability. (How degrading is that?)

2. If you miss key words the first time, ask the speaker to repeat what was said. If you are the speaker and you want to make sure you were understood, ask if you need to repeat or ask the person to repeat what you just said. Your support partner can help by asking for repetitions if you can’t get the request out quickly enough.

3. Get important news and information from the internet or newspaper. You can read at your own speed and replay video clips to pick up words that you miss. Talk radio is another good resource, as many news items are presented in depth. You do have to be able to pay attention to verbal conversation for longer periods of time to listen to talk radio.

4. Don’t be afraid to have your support partner run interference for you in group conversations. Clarifying a couple of key words can help you catch the flow of what is being said and allow you to stay involved in the discussion. If your support partner will not be with you (and the group you will be with does not know about your problem), tell someone in the group that you know and trust, or tell the group facilitator. They may be able to help you without causing you extra attention that you don’t want.

5. Record important presentations or request any available CD or video formats that you can play back later at your own pace. You can clarify information that you need in this manner.

If you have these cognitive processing issues caused by MS, it is very important to remember that you don’t have Alzheimer’s, you aren’t going crazy, and you aren’t stupid. Most people with MS who have these issues still retain all the information they have learned over the years. They just have a little more difficulty accessing it due to the damage MS has caused. Don’t beat up on yourself. Just adapt to the situation and slow down!

Work on Your Relationship

2009-11-13T07:53:00.000-08:00

The National Multiple Sclerosis Society now has an educational series called Relationship Matters. We have been receiving updates on this course and noticed that the presenters of this course are using Dr. Gary Chapman’s The Five Love Languages as one of their references. We have read this book a couple of times to help our own marriage and have found it extremely helpful. Dr. Chapman has several versions of The Five Love Languages available, plus many other resources, through his website, http://www.garychapman.org/. All materials are available in both book and audio CD versions. Some books are also available in large print and DVD versions.

We have used a couple of other resources to help our relationship grow. One is the book Love and Respect by Dr. Emerson Eggerichs. Many churches offer this series in a small group DVD format and you may be able to find a class in your area. Dr. Eggerich’s books are available through his website, http://www.loveandrespect.com/.

Our favorite is Mark Gungor’s Laugh Your Way to a Better Marriage. This is a very entertaining and insightful DVD series that pretty much anyone can sit down, watch, and gain something from, even if they are resistant to working on a relationship. We even loaned this DVD set to our parents who enjoyed it very much. Mark Gungor’s materials are available through his website, http://www.laughyourway.com/.

If you are dealing with the cognitive issues of multiple sclerosis, it is very important to have clear communication and support from your significant other. Many of the misunderstandings caused by cognitive problems can be identified and worked out if you have a close, loving relationship with your support partner. All of these materials can help you if you are having relationship problems. We would encourage you to visit these websites and explore the resources available. Many of these books are also available through Amazon.com.

Why Did He Act That Way?

2009-11-09T14:14:00.000-08:00

Janet writes: When Tim and I were first married, I would sometimes feel this communication gap between us. I would sometimes feel that I would tell Tim about things and that later he would accuse me of not telling him or that he would often misunderstand what I was saying. I also experienced a few times where he would become angry at me over things that he said I was ignoring, when I didn’t remember him telling me about these things in the first place. While these instances were not frequent enough to break up our relationship, I did find them stressful and did wonder why we had these communication problems when we communicated just fine at other times.

After we had been married about 8 months, we attended a workshop on multiple sclerosis and marital relationships. I had attended workshops on multiple sclerosis as a healthcare professional, but never as a family member, so this was a very different and eye opening experience for me. It was at this workshop that I gained some new insight into the cognitive issues that can occur with multiple sclerosis, and I realized that the misunderstandings that Tim and I were having were most likely due to these cognitive issues. It dawned on me that he was forgetting things that I told him or forgetting to tell me things, and that he was not saying the words that he was thinking when he told me something. Even one wrong word would change the whole context of what he was trying to tell me.

I started to change the way I communicated with Tim based on this new information. Instead of just telling each other our schedules, we began writing them on a wall calendar. We began checking with each other before making any changes to this schedule and tried to cut back on last minute, spur of the moment activities. When Tim said something to me that didn’t quite make sense, I started to repeat it back to him to make sure that he had said what he wanted to say. Often, one of the words he had said was not correct and he was able to hear it and correct it. We found that these few simple changes cut our disagreements way back and made our daily lives run much more smoothly. We will write more about the changes we have made in future posts.

MS for Dummies???

2009-11-06T18:43:00.000-08:00

Who would think to find a comprehensive, easy to understand explanation of the cognitive symptoms of MS on Dummies.com? They have a nice page on the topic. Click on the title link above to check it out.

Introduction

2009-11-05T18:56:00.000-08:00

We went to a presentation on multiple sclerosis the other night given by Tim’s neurologist. It was very good and provided the audience with a comprehensive, easy to understand overview of the disease. When the question was asked about research related to cognitive symptoms and MS, the presenters had a difficult time answering it in anything more than a general way. While great time and expense has been spent researching the physical effects of MS on the human body, the same cannot be said for the time spent studying the cognitive effects. This subject has just come under the spotlight in the past couple of years.

This is one of the reasons Tim and I are starting this blog. We want to do what we can to bring attention to the subject of the effects multiple sclerosis has on cognitive functions, a person’s behavior, and their relationships with their family and friends. We have found that many of the problems that occur in relationships between people with MS and their spouses, children, or other people close to them happen at least partially due to the cognitive changes caused by MS. We hope the information on this site will be helpful to people experiencing these cognitive issues.

So what is the cognitive meltdown of multiple sclerosis? Cognitive symptoms one can experience due to MS include problems with short term memory, paying attention to tasks, executive functions such as problem solving or decision making, and retrieval of information such as trying to remember a word. When you have difficulty with these areas due to MS, you might feel like your brain is having a meltdown! Your family might not understand your symptoms and might attribute your behavior to other reasons, which can cause misunderstandings and fights, or worse. Understanding and knowing how to deal with these cognitive symptoms can help greatly in making your life your loved ones lives easier.