Questions

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!

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

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

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!

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

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

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!

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

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

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

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!

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

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?

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???

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

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.