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Good evening everyone. I’m so glad you remembered to join us this evening! As you know the Multiple Sclerosis Foundation has designated the month of March as National MS Education and Awareness Month™.
We are delighted to welcome each and every one of you to our National MS Education and Awareness Month teleconference series. I’m Chris Ratliff. I’ll be your host for this evening’s program -- Plotting a Course for Cognitive Issues -- with Dr. Jennie Q. Lou.
Dr. Lou is Associate Professor of Occupational Therapy and Associate Professor of Public Health and Internal Medicine at Nova Southeastern University in Ft. Lauderdale, Florida.
Dr. Lou has unique training and extensive experience in the fields of neurology, neuroscience, and occupational therapy. Her clinical and research areas include the application of neurotrophic factors in promoting regeneration and sprouting of nerves in neurodegenerative diseases, and in clinical trials on evaluating the effectiveness of specific rehabilitative interventions and wellness health programs for people with neurologic disorders.
For over five years Dr. Lou has been a member of the MSF Medical Advisory Board. We’d like to welcome Jennie Lou. And we’re going to start off this evening’s call with the first question.
Dr. Lou, how does a person recognize that MS is affecting their cognitive function? |
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Well thank you Chris and everyone. |
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You’re welcome. |
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Okay. I’ll begin to talk about what cognition is just briefly and I’ll get to the question directly. Cognition is the acquisition and use of knowledge or the process of thinking or the process of knowing.
The cognition factor is made of higher functions of the nervous system including those involving visual processing, language, sensory, and emotive processing, reasoning, problem solving, attention, and memory.
Cognitive functions are organized in a hierarchic way with the more complex drawing on the collections of more fundamental functions. Cognitive dysfunction is one of the more scary symptoms of multiple sclerosis.
Before 1990 it used to be thought that cognitive dysfunction was a relatively rare syndrome of the disease. But it is now understood to be a quite common feature. Cognitive dysfunction is probably subject to more misconceptions than any other topics in MS in part because we tend to avoid talking about it.
Cognition involves the coordinated activity of your entire brain. Your cognition symptoms can result from problems in any part of it. According to different sources anywhere from 40% to 70% - and most research indicates 50% of people with MS are affected with various cognitive problems. About 40% have mild dysfunction -- that’s good news -- while only about 5% to 10% have moderate to severe impairment.
Cognitive dysfunctions arise when lesions – the areas of MS damage – occur in certain locations in the brain. As we all know in MS the myelin, the material that sheaths the nerves in the brain and the spinal cord is damaged. Scarring is often left in the place of the healthy (unintelligible). We now learn that the underlying nerve can also be damaged even severed.
So MS lesions may develop anywhere in the brain or spinal cord but when they appear in the cerebral hemispheres -- the thinking part of the brain -- some thinking functions can be affected.
More recent studies using MRI have also shown a definite relationship between the lesions and the cognitive problems leaving no doubt that MS is the cause.
Damage to the structures that join the left and the right half of the brain are particularly serious - structure sites as such (unintelligible). There are also secondary causes of the cognitive impairment, for example depression, anxiety, stress, or fatigue.
I just want to stress here first cognitive problems caused by the secondary inferences are potentially reversible if the secondary inference is treated successfully.
So get to the question, get to the first question. How do you know if your cognition is being affected by MS? Well the most common cognitive difficulty in people with MS is mild to moderate impairment of short-term memory. People who usually have good memories may find themselves forgetting things such as phone numbers, appointments, very common.
Next the attention span and the ability to concentrate may be diminished. Sometimes they may find it hard to keep track of what they were doing before they were interrupted. For example they may have difficulty getting back on track if the phone rings while they were doing something else. These problems can be minor but they can be extremely frustrating and upsetting.
Some people with MS experience more serious cognitive problems. They have difficulty with planning and problem solving and tend to become overwhelmed and inflexible when a task is too complex. They may lack the flexibility to generate alternative solutions. They may even be unaware of their own difficulties and have problems monitoring their own behavior.
Difficulties with the self-regulation of behavior can create problems in many different ways. Some people with MS may be unable to plan or organize purposeful activities. Sometimes the problem may be in the area of initiating action. Difficulties with getting started may appear to others as depression or lack of motivation.
Other people who have MS may have the opposite problem of being unable to stop themselves. They may be talkative and uninhibited blurting out comments they would have kept to themselves in the past. Because they are unresponsive to the normal social clues that let them know their behavior is inappropriate they seem very impulsive and obvious - I’m sorry - they seem very impulsive to the reaction of others.
Also fluency with words may be diminished. The person searches for a word. It’s, you know, the feeling like the word is on the tip of my tongue but it’s just not there. This too is a recall problem. Just remember it’s not the same as the changes in voice quality or the slow rate of speech, which are also associated with physical changes caused by MS.
I have a whole list of cognitive difficulties observed in people with MS. I’m going to pick a few. I mentioned problems with memory. If you notice excessive grogginess, low levels of initiative or motivation, poor mental acuity like sometimes you feel like your thinking is fuzzy, indecisiveness, problems with planning or organization, problems with abstract thinking, judgment, or reasoning -- that’s at the highest level of cognition -- problems understanding what you’re reading or hearing. Poor concentration. I mentioned. Preservation - you get stuck on a thought. You just get stuck. Problems processing intense complex or fast moving sensory input. Also poor selective attention. You can’t choose what you want to think about, look at, or listen to if you’re in a very noisy environment. Spatial disorientation - although this is a very rare cognitive problem with MS.
So if you experience any of these symptoms or if your family members - people who are close to you notice the problems then you know your cognition may have been affected by MS. Chris? |
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That was very interesting. Which medical professional or health care provider should people talk to about cognitive issues? |
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That’s a very good question. Like I mentioned before, before 1990s, health care professionals were advocating not talking about the cognitive issues of MS. So I would not be surprised if some of the physicians are still unaware of the frequency and intensity of cognitive problems in MS.
At any rate, if you experience those signs and symptoms you definitely need to talk to your physician, your neurologist, your psychologist, or even your therapist.
A professional evaluation may be in order if you or those closest to you notice a change for the worse in cognitive function. For example, you know, if you have increased trouble with remembering things and is it becoming harder to stay focused on a task. And also maybe you’ve recently experienced lapse of judgment, trouble coming up with words in conversation.
So talk to your physician and bring a friend, bring a family member and describe all the signs and symptoms to them. Chris? |
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And what if they do that and their doctor doesn’t understand cognitive challenges or doesn’t take them seriously or doesn’t even realize that MS can affect cognitive functioning? |
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That’s just an excellent question. Well first of all, you need to recognize it in your family. Your family - people who surround you need to recognize it. Your colleagues need to recognize it. So if they recognize it that would be very helpful.
And you can go to your physician and if the physician does not take you seriously I think in this day and age you should bring evidence to your physician. You can bring brochures, articles, talk to you doctor and educate your physician. That’s what I would do. |
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Okay. That’s a really good suggestion. And when might a person be referred to a neuropsychologist or when might a neuro exam be warranted? |
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Okay. Usually, as I had mentioned before, depression is a secondary cause of cognitive problems in MS. And we know depression can be successfully treated with drugs or psychotherapy. So people - hello? |
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Hello. |
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Yes. Am I still here? |
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You’re still here. |
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Oh I heard a beep. Sorry. |
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That’s okay. |
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Okay. So when you talk to a psychologist - talk to a physician if the fatigue and depression can be treated the cognitive changes can also be treated through cognitive rehabilitation. But a choice of a proper treatment depends on the right diagnosis. So who can make that diagnosis properly?
A formal neuropsychological evaluation may require two to five hours and it’s very costly. Three different kinds of specialists can evaluate cognitive dysfunction. Number one, a neuropsychologist. Number two, a speech language pathologist. Number three, an occupational therapist.
These three specialists use different assessment tools but they share the same ability to identify cognitive changes that are affecting a person’s daily life. A psychiatrist and a neurologist may perform a brief evaluation -- like a mini mental -- that’s included in routine checkups. But these brief evaluations generally pick up only the most severe forms of cognitive dysfunction.
The mini mental status exam is insensitive to MS related cognitive impairment. So I believe a brief cost effective and reliable neuropsychological assessment may be of great value and may contribute to a global evaluation of the disease progression in an individual.
After a brief evaluation, a formal neuropsychological evaluation should be done by a qualified neuropsychologist. A neuropsychologist is a specialist in the behavioral changes caused by brain diseases or trauma.
Preferably you will find one who has had experience with people who have MS. A psychologist without this training may have difficulties selecting the proper test and interpreting the test.
When you go to a neuropsychology evaluation we really want to document - it is very important that your physician document the history of these symptoms as soon as they appear. So I would suggest to you as soon as you discover that you have those symptoms ask for a referral to a neuropsychologist.
However do not assume that your insurance plan covers neuropsychological evaluation even if your physician prescribed it. You should always check with the insurance carrier so you can make an informed decision. Chris? |
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Yeah that’s very interesting. Would you say that it’s generally covered by insurance? |
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It’s generally covered. But you want to make sure. You cannot assume. |
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Right. |
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Because it’s quite expensive. |
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And what about with a speech language pathologist or an occupational therapist? |
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Usually they’re covered if they’re prescribed by your physician to a certain amount depending on what type of insurance you have. And there’s a limited amount of dollars on those services. |
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Right. I would think that - you say that people should go as soon as they notice the symptoms. Is that to establish the baseline? |
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No. Let me make myself clear. I suggest as soon as you discover that you may have some problem with cognition you should ask for at least a global assessment to establish baseline definitely. But as with the physical problems cognitive problems can come and go in MS patients.
If you want to monitor - your physician may be - if they want to monitor the drug they’re using they can also use a neuropsychological assessment as an assessment tool. I’m not suggesting you should have a baseline because cognitive problems can come and go in the MS patient. |
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Okay. Can you offer some practical strategies for managing and maintaining cognitive functions? And also maybe touch on the disease modifying drugs and whether or not they are - whether or not we know yet if they help to maintain cognitive function. |
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Okay. Well the strategies for managing and maintaining cognitive functions - they’re not just useful, they are essential. I would recommend a few strategies.
Strategy Number 1 - is you have to recognize it. You have to recognize that you have a cognitive deficit. And you need to get help - need to get the help you deserve whether it’s from the support group that you’re in or from the family members surrounding you, or from the professionals - the health care professionals.
Well if you suffer from cognitive problems sometimes you may be unwilling or afraid to admit them to your friends or maybe even your colleagues, maybe your boss. You may not even be aware of them.
But people around you if they don’t realize these cognitive difficulties and memory lapses are caused by your disease they may think you are being, I don’t know, lazy, careless maybe, not paying attention to them or thoughtless. So you may become very frustrated and upset.
So I would say Strategy Number 1 - recognize it and get the help you need. And in recognizing it you also need to know what are the things that can make the cognition worse in you. For example - fatigue, lack of sleep, depression, stress, and heat, especially in the summer. These are the most common ones. But you know your body the best. You know which ones will cause the problem.
Strategy Number 2 is to respect the complexity of everyday tasks. When you look closely at the cognitive demand of any of the tasks that you perform every day you will notice that things are more complicated than they appear to be because of the cognitive problems you are experiencing.
Remember efficient cognitive functioning depends upon the coordinated activity of your entire brain and many if not most tasks place demands upon several cognitive abilities at the same time. So even everyday tasks as simple as doing laundry, making phone calls, can present incredibly complex cognitive demands.
So this suggests one of the most important general strategies for dealing with your cognitive deficit - recognize and respect the cognitive demands of the task.
You know, don’t be frustrated because I know you think this used to be so simple. I never used to have any trouble figuring this out. I must be really stupid. No. It’s not so simple. Everyday tasks can make complicated cognitive demands. You should recognize and respect these demands.
One of the basic principles of managing all of the symptoms is - I hear this from research participants in my study they always say, you know, the one thing you’ve got to tell yourself you cannot take things for granted anymore.
Strategy Number 3 - stay conscious of how well or how poorly you’re functioning. The abilities that are declining are precisely the ones that you need to recognize.
So here’s the benefit of becoming familiar with your own cognitive symptoms. These symptoms tend to be extremely sensitive to changes in your level of stress, your physical fatigueness, so they may serve as effective warning signals, changes in the ways that your cognitive abilities are working may provide some useful clues that you’re approaching your limit. Say hey I need to slow down. So you need to listen to your body.
Strategy Number 4- make the most of your good days - good times. Managing your symptoms presents a number of intense intellectual challenges.
So you need to do most of the work during the periods when your cognitive abilities are at their best whether it’s doing the entire process of the disease progression or it was during the day.
Analyzing the experiences and developing and rehearsing of strategies has to take place during periods of peak functioning. So what I mostly see in the morning that’s your best time - make the most out of it.
This concept cannot be overemphasized. And we can - I’m sure you have developed many tips for yourself to improve your cognitive function. I can just give a few examples. I’m sure you guys can share some very effective tips.
For example, you want to internalize your cognitive abilities. I use a pocket PC with the sound and the beep to remind me of the appointments I have. So some people use a big calendar or use post-it notes. Although I’m not such a great fan for post-it notes because they tend to get lost.
But definitely use all the technology that’s available now. For example you can use your personal digital assistant -- PDA -- and use your cell phone to program a timer.
And you want to arrange the environment where you perform your tasks. For example you always put the scissors back to the first drawer in your kitchen. And you keep items of importance within reach so you don’t have to think about it and it’s right there.
Develop and use task performance routines. So make a daily list and write down things that come to mind. Keep a calendar - a yearly calendar, monthly calendar, for all the family activities, birthdays.
Adapt and modify the way you perform tasks. You want to combine activities that you need to remember. For example, take your medication right after you brush your teeth. You do that everyday so you won’t forget.
Do activities that require going outdoors during early morning or evening to avoid extremely warm temperatures because extremely warm temperatures can affect your cognitive function.
Simplify or reduce task demands. That works very well for me. Prioritize and plan my week. Some of us have to learn - we need to learn to ask friends and family members to help us.
And one very useful strategy to improve your memory is to rehearse because according to research when you have memory problems if you externalize and use all your senses - say you say it out loud and when you hear yourself you repeat it seven times then you’re less likely to forget.
And also if your family members are aware of your cognitive problems they can give you feedback so you can adjust your behavior according to the feedback.
Use focusing techniques to create an artificial zone of good cognitive functioning. For example, I found practicing yoga is really helping me so I can get the best cognitive status after that. Definitely get sufficient rest and relax before you start a new task.
Also there’s a strategy called Story Memory Technique (SMT) to use a story - when you tell a story to remember things - use a theme. Use mental pictures to aid memory, etcetera. I’m not going to take up the whole time because these strategies should be individualized and people should try different techniques and use the ones that work for them the best.
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Great. Can an occupational therapist help with cognitive strategies? |
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Yes. Occupational therapists are trained in helping people improving their daily function whether by teaching the compensatory strategies or by teaching retraining techniques. |
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Would you like to open up the lines for some questions... |
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Yes. |
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Okay. Can we do that, Tara? |
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To ask a question please press star then the number 1 on your telephone key pad. We’ll pause for just a moment to compile the Q&A roster. And your first question comes from Jeffrey Gingold. |
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Hi Jeff. |
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Hi how are you? |
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Good. How are you? |
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Good. Good. I was just wondering if the doctor could identify anything - any of the studies that she’s talked about that patients could read so that they could identify some of the characteristics of cognitive dysfunction that she’s identified? |
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I couldn’t hear very clearly. Could you repeat your question please? |
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Sure. Sure. I was wondering if you could identify any study or studies that patients could check out so that they could identify some of the cognitive dysfunction that you’ve identified so that they could read about them... |
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Okay. Yes. Cognitive disabilities in MS are totally understudied and definitely need more research. But I can identify a couple of them for you right now. Let me see.
I have a study that’s done by the Psychology Department in Penn State University. It’s called Neuropsychology and Multiple Sclerosis. It’s a very good article. It has some reviews and it talks about neuropsychology and multiple sclerosis, (unintelligible) and the nature of the cognitive deficit, attention and concentration, information processing in MS. It talks about possible causes...
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I’m sorry - Jeffrey if you can’t get all this now we can get this from Dr. Lou later and post it on the website. |
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Yes I can give Chris the reference of the article and some other articles. |
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Great. |
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Okay? |
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And Chris I think I forgot to answer your question regarding the medication... |
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Okay. |
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During the last few years there have been numerous studies of ways, you know, to stabilize or maybe improve cognitive dysfunction. Some of the studies have looked at whether MS - those disease modifying drugs we talked about can slow down the progression.
So far from what I have read results have been very mixed. Among all the studies I have read Interferon beta 1a is the most - has shown the most potential.
However because, you know, we all know the disease modifying drugs have been shown to reduce accumulation of the lesion - the new (unintelligible) lesion it is likely that over the long term all modifying - all disease modifying drugs should all help to stabilize cognitive changes. That’s a hypothesis. Hasn’t been proven yet.
Some studies also used (unintelligible) treatment to, you know, study the possible effects. By far - I’ll just say very mixed mix of results. Some of the studies are not strong enough - the design is not strong enough - to me, you know, you see some promising results I would say wait and see. Did I answer your question? |
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Yes. Yes that’s very helpful. Yes can we take the next caller now? |
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Your next question comes from Denise Hodges. |
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Hello. |
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Hi Denise. |
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Hi, you know, I have a problem with anger. And I’m always able to control my temper but, you know, I get mad and it’s just like I’m about to blow. Is that a cognitive problem? |
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Yes that is. Well if you notice that’s a new thing for you, you know, - before you were not usually one to lose your control, yes. As I said the inhibition in the brain - the higher level of cognition could be affected by MS. Yes. |
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Now I had a neuropsychological exam done. It took eight hours. I got the results and read them. Do you think that’s a good thing to do? I passed, you know. |
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So they didn’t detect any neurological dysfunction? |
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Yes. Yes as a matter of fact my IQ dropped. And I’m glad to know these things. I didn’t realize some of the things that I read on that study. |
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Yes the drop of IQ is - I’ve seen quite a few reports on drop of IQ in MS patients. This could be affected by several reasons. We all know, you know, we call the way of thinking - cognition is the way we think has been affected. You have to admit but normally the majority of people with MS the IQ would stay the same. |
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Thank you. |
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You’re welcome. |
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Can you make a transcript of this teleconference available? |
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It will be posted on our website.. |
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Thank you. |
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...in about two or three days. Thank you for calling. |
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Your next question comes from Michelle McElvane. |
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Hi Michelle |
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Hi. |
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How are you? |
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I’m fine. I had some suggestions not so much a question. |
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That good. |
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I use fun tack you know, it’s like Playdough and it holds everything like she was saying the post-it notes eventually wear out. But I always have index cards right by my side.
Now I’m wheelchair bound so I’m in a recliner and I’ve got one spot that’s mine, don’t mess with it, because I’ve got things organized where I can use it. But the index cards and fun tack and so many people they can’t believe - I mean, you can straighten a picture on the wall with a little piece of fun tack. But I use it all the time. And it helps me remember things that I haven’t, you know, like the teleconferences. I’ve missed some of those, which really made me mad. But... |
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Well excellent excellent suggestions. |
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And like I do puzzle books. You know, it keeps your mind going and functioning in different fields to give you things to do which does help another aspect of your life. But that was about it. |
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Thank you so much. |
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Okay. |
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Your next question comes from Cynthia McClendon. |
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Hi Cynthia. How are you doing? |
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Hi I’m doing pretty well. Thank you for these teleconferences - very great. I wanted to find out if there was a place where I could find more about memory improvement techniques that I can employ myself. For example is there a website or someplace I can go to see, you know, maybe a list of the techniques and maybe examples of those that I could try to, you know, improve my memory - the memory issues I’m having with MS.
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Chris? |
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Yes? |
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We can do this right? |
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Yes. |
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Yes we can definitely do this. And getting a collection of resources for - you know, there are different types of memory strategies...
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Right. |
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...that people use. |
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And I’m most interested in like, you know, I know there are different parts of our memory. The short term you talked about the major problem which is what I find to be my problem. But, you know, which techniques work better on short term memory versus long term or which ones help with recall, things like that that’s really what I’m looking for. |
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Yeah let me elaborate on this one because I think that’s a very common one. You see when you try to memorize something first you have to learn it. You have to write it in your brain. And then your brain is going to organize it and then the brain is going to store it in a certain place.
When you need information you’re going to have to retrieve it. So the whole memory process has so many steps. If any of the steps is broken or is slowed then you’ll have memory problems.
That’s why I said it’s very important for you to get a neuropsych evaluation because they can tell whether you have organization problems or is it storage problems or is it retrieval problems. Then they can develop specific strategies for you to work on.
Most commonly in MS patients the retrieval is not the problem. Usually it’s the learning - the initial learning. You think you know it. You actually didn’t quite get it. Or the organizing - storage - that’s a problem.
So if you know which part of the memory process you’re having trouble with then you can really work on it.
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Okay can we take another question? |
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Thank you. Thank you. |
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You’re welcome. |
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Your next question comes from Deborah Quinn. |
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Hi. Thank you very much. The question that was just asked previously was pretty much the question I was going to ask. I’m searching for tasks that I can use to increase my cognitive ability. And I think I’ve heard again that you have to first identify in the storage, in the organization, the store or the retrieval. You stress the test that I’ve never had done before -- the neuropsychological evaluation -- but I’m scared to have that done. |
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Oh well the neuro psych exam is not to - well it is to identify which areas are totally intact like your strength and your weakness so we can use the strength to compensate the weakness to improve your daily function.
So you really shouldn’t be scared. I know you’re a little apprehensive - the neuro psych assessment could take regularly two to five hours but, you know, if for some reason it could take up to like the previous caller said eight hours. Usually you don’t have to stay there for eight hours at once. You know, they can break down the test for two or three times. You can always go back and do it.
And the experience I have in working with neuro psychologists they are the most wonderful people to work with - very understanding because they really know the most about why we behave the way we behave. That’s what they’re trained for. So they would be very understanding. |
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All right so this is a kind process. My thinking wasn’t so much how long it was going to take but my thing was like oh my god how stupid I’m going to find out I am, you know, like that kind of thing. |
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You are going to find out where your strengths are so you can use your strengths to deal with the weakness you have. |
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But I like when in the beginning you talked about the rebuilding or I guess regeneration. I like that. I guess that’s some of the skills we’ll find out because that’s what I’m hoping... |
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A regeneration of the nerve? |
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Yeah. |
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Oh so my study was before I did research on Alzheimer’s disease. I’m sure you all know this famous drug called Aricept. The drug called Aricept is currently used to treat memory problems in Alzheimer’s disease. There has been some interest in the possible use of Aricept in MS.
There was a clinical trial I read - I think they had 69 people with MS that participated in this study. And they found that Aricept improved performance on memory tests. Although I totally believe we need more studies and larger clinical trials to confirm the findings.
The Aricept has been shown, you know, that was related to (unintelligible) - okay I’m now getting to the pharmacological thing but I was just adding some additional information on the medical treatment in responding to your question. |
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Everyone would like to know, I’m sure, that Dr. Lou is going to be writing an article for MSFocus in the next couple of months and it’s going to focus on cognition.
And so call in with your questions because she’s going to base her article on just what you want to know. So keep calling with the questions. Can we take our next question? |
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Your next question comes from Kelly Cowen. |
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Hello Kelly. |
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Hello? |
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Where are you calling from? |
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I’m calling from Sacramento, California. |
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Hello Kelly. |
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Hi. I had a neuropsychological evaluation last March. And the results, even though I knew I was having problems because it affected me on my job, getting the results that I was having problems was very difficult. Did a lot of crying about it.
And I’m having trouble accepting that I’m not thinking the way I used to even though I see it all the time. But I just don’t seem to be grasping what people are saying or the memory. You mentioned how fatigue and depression also affect cognitive function? |
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Definitely. Fatigue, depression, stress, can definitely impact anybody’s cognitive levels including people with MS. In my opinion people with MS are even more vulnerable to these secondary causes.
The way to differentiate whether your cognitive dysfunction is caused by the primary damage in the brain by MS or by those secondary causes and then you get treated with the depression, you get rid of the fatigue, all the stress, and to see if your cognitive functions have improved. You know?
Usually if the cognitive function is caused by secondary factors when the secondary factors are lifted you should see changes in your cognition for the better.
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Well I’ve gotten rid of the stress. The depression I think with time has gotten better but it’s not gone. I’m still having issues and sometimes I’m afraid to open my mouth. I just don’t know how to deal with that or how to present myself to other people without coming up to them and saying well I have MS and I might not make sense all the time or... |
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Do you find it difficult to tell people that - like I have MS. Sometimes I may lose control of what I say. Could you help me if you see this coming? |
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I do have problems saying that. |
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Yeah well maybe choose one of your closest friends or family member. Try it. People usually are more understanding than you think they are. And also I think every time we lose something we have to go through the grieving process.
So really, you know, you’re not accepting it. You’re still in denial. You know, you don’t want to believe that your cognition is impaired but you really have to go through that. A psychologist can really help you to speed up this process.
As I said Strategy Number 1 - you have to recognize it. You have to accept it and you have to acknowledge it and get the help including letting people around you know what they can do for you. They can make your life much better. |
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Okay well thank you very much |
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You’re welcome. |
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We also have a book that was just published this week, I believe. It’s called Facing the Cognitive Challenges of Multiple Sclerosis. It’s written by Jeffrey Gingold. And it’s available through our lending library.
I think you’ll all really enjoy it. I read the whole thing. And it’s a real page turner and you will not feel like you are alone with your cognitive challenges after you read Jeffrey’s book.
So give us a call if you’d like to borrow it. Can we take the next caller? |
Operator:
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Your next question comes from Nancy Surber. |
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Hi Nancy. |
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Hi. Thank you. I was wondering if you could tell me more about how to deal with preservation? |
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How to deal with preservation? You know, could you give me an example in your life that you... |
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Well it might be a simple problem or something someone said that irritates me that I just keep thinking of over and over. |
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Well that’s actually not uncommon in MS patients. You know, when your brain - the brain works in a very interesting way. You know sometimes when we have a lot of information in and you can’t take it anymore, you need to forget some.
So in a normal brain - with a normal brain we’re constantly forgetting things and switch things out of that area to be able to get new information. In people with MS we’ve seen patients with the preservation like they get stuck on one - they cannot switch out.
The best strategy in clinical that I found is to use metacognition strategy meaning you teach yourself how to think. This is a great first step. You already realize sometimes you get stuck and you also have to tell yourself this is a part of the disease process. This is part of the disease process. So what do you tell yourself to do? You teach yourself how to think.
If it gets very severe and this has impacted your life I would suggest psychotherapy because psychologists they are very knowledgeable in teaching people how to think differently. |
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Okay. Thank you |
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You’re welcome. |
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Again if you would like to ask a question please press star then the number 1 on your telephone key pad. You have a follow up question from Deborah Quinn.
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Thank you. I’d like to talk about recall. I don’t know if we talked about drugs that are being used to help cognitive - for example my neurologist put me on Novantrone and I recently told I didn’t want to be on it anymore because my cognitive abilities were great and Novantrone can have horrible effects on the heart. So can you give me some feedback on that? |
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You’re asking me about medication on cognitive improvement? |
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Yes. |
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For memory? I think we did talk about it - you know, we talked about disease modifying drugs have been tested - Interferon I mentioned one. And I mentioned Aricept. |
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What about Novantrone? |
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I have not read something very positive about Novantrone I can’t give you any scientific evidence at this point. I could do some research and, you know, and we can talk about it in my article maybe? |
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Okay. Thank you. |
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Yeah that sounds like a good idea. What about the study recently with coffee and the effects of coffee on cognition? |
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Well it’s just my personal opinion I can’t really endorse it yet. To me - I’m a certified epidemiologist too. So really when I read research studies I really look into the power of the study, the desire of the study, and the measurement tools they used whether it’s sensitive or, you know, I hate to give very definite answers without seeing some very strong evidence. |
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What about - as far as the antidepressant medications - is there, as far as you know, a specific antidepressant or specific class of antidepressant that is better for cognitive functioning or might foster better cognitive functioning than another type of antidepressant? Dr. Lou? Tara? |
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Dr. Lou has dropped off from the conference. |
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We lost her? |
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Yes ma’am. Is there a number I can dial back out to her. |
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I’m sorry? |
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Is there a number that I can dial out to her for you? Or do you want to wait a few minutes to see if she dials back in? |
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We can wait a few moments. We’re almost out of time. Is there someone else that has another question? |
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Yes ma’am. |
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Okay we can take another question. |
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Okay hold one moment. You have a question from Denise Hodges. |
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I wanted to follow up to the woman who was afraid to take the neuropsychological exam. I felt - like I understood why I was doing some of the things I was doing after I took mine. It was lengthy and I wish I had prepared more. But I think she would be glad that she’d do it. |
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How would you have prepared more? |
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Well I live in Louisiana and it was right after Katrina. And I wished I had gotten more rest. And I felt like it was popped on me. I know you can’t study for it. But I didn’t bring a lunch. There were ways I could’ve prepared. And I do take the drug Aricept. And I would like to take it now again. I think I could improve |
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Hello? |
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Welcome back. |
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Oh thank you. I don’t know what happened. |
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Maybe we could take one more question? |
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Okay. Yes. |
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Thank you. |
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Your next question comes from Gail Peermore. |
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Hi Gail. |
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Hi. My question is an easy one. You mentioned earlier that we - am I there? |
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Yes. |
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Okay. You mentioned earlier that we wanted some information if we wanted to borrow the books in the lending library we should call in. Well honestly I don’t know who’s sponsoring the seminar so I don’t have a telephone number. Could you give us that number? |
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Yes. It’s the Multiple Sclerosis Foundation. |
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Okay. |
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And the phone number is 888-MSFOCUS. That’s 888-673-6287. |
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Thank you. |
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You’re welcome. |
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Okay. Bye bye. |
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Bye bye. One more question? |
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Your next question comes from Tom Kenna. |
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Hi Tom. |
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Hi. I don’t have access to the Internet and I was wondering how I could become a subscriber to the MSFocus Magazine. |
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You can just call the number that I just gave to the last caller. |
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What was it again? |
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It’s 888-673-6287. |
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Okay. Thank you very much. |
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You’re welcome. Would you like to take one more question Dr. Lou? I think we have time for one more.
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Okay let’s take one more. |
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Okay. |
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You have a follow up question from Kelly Cowen. |
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Hello? |
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Yes Kelly. |
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Hi. I remember you were talking earlier about the Interferon beta 1a as helping over time with cognitive... |
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Yes. |
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...and you think that the other disease modifying drugs ought to do the same? |
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In the long run. |
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I’m on Copaxone and I’m wondering if that has been shown at all to be even in comparison to the Interferons... |
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Well a few studies have also looked at it the effects of (unintelligible) and the Copaxone cognitive functions. Copaxone really - there’s a large clinical trial of Copaxone that reported no benefit for cognitive function. So far that’s just one large clinical trial I have seen. But like I said disease modifying drugs reduce the number and severity of the MS attacks and we know (unintelligible) scarring in the brain that cause the actual problem - the cognitive problem.
So the disease modifying drugs reduce signs of damage to the brain tissue as we can see on MRI and delay the progression of disability. I’m very optimistic. They may all, in the long run, have beneficial effects on cognitive function. But like I said, so far no definite evidence. |
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Was that a good study that showed that? |
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That large trial yes. That was a very well done study on Copaxone, yes. |
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Now if I’m no longer working because of the cognitive problems I’m having would it be worthwhile to switch to Interferon if it could help me cognitively or is the damage already done? |
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I think that you have to discuss that with your neurologist. I can’t, right here, I cannot make any suggestions for you. Although, you know, you are not working because of the cognitive problem? |
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Cognitive problems and fatigue. Yeah it got bad. |
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Well, like I said, the cognitive problems - some minor cognitive problems - can change your life and the work you are able to do because of the demand they have on your life and on your job - some people with moderate cognitive deficit may still be able to keep things going if the demand from the environment can be changed or modified.
I would still refer you back to your neurologist to discuss the change of medication. Because the studies were presented - they were only one study. |
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What year was that study published? |
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It was quite recent. See, I have memory problems too. I cannot remember the year of that study. I think it was 2004. I believe it’s 2004 but I’m not 100% sure. |
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If you want to e-mail me you could e-mail the editor@msfocus.org. And I can get more information on this specific question from Dr. Lou for you. |
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Okay. |
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Do you have e-mail? |
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Yes. And I just typed what you just said. |
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Right. It’s just editor@msfocus.org. And I’d be happy to forward that question along and see what else we can find out for you. |
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Okay. |
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Okay? |
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Thank you. |
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You’re welcome. I think we’re about out of time. Dr. Lou, you were wonderful. |
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Oh, thank you. |
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You always are. You did a great job and I’m sure everyone learned a lot. And we’ll all forget it tomorrow morning! But thank you for joining us. I’d like to thank everyone for joining us. And remind you that if you have not yet requested an MS awareness kit that they are still available. You can call us at 888-673-6287. We’d be happy to mail one out to you.
And if you have any questions you can e-mail them to me and we’ll do our best to get those answers to you. So thank you Dr. Lou. And thank you to everyone who called in. |
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My pleasure. It’s always a pleasure working with you. |
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Thank you, Jennie. |
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This concludes today’s Plotting a Course for Cognitive Issues conference call. You may now disconnect |
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Good night Jennie. Thank you. |
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Bye Chris. |
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END |