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.