Discombobulated

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

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?

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!

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?

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

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

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

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!

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

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

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

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

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

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!

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

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

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?

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

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

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

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

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

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

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

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

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

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

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

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

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

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?

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

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

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

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

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

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

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

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

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

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

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