Moderator: |
Good evening everyone, and thank you for joining us for the final chat in the MS Education and Awareness Month Series. |
Moderator: |
When you send a question, it is received by Dr. Lou and myself. It does not appear on the screen to all the participants until the question is answered. For this reason, there may be brief delays between each question. Please be patient while Dr. Lou answers. You may send your questions for Dr. Lou now, and at any time throughout the chat. Please take advantage of the wonderful opportunity Dr. Lou is giving us, and ask away! |
Moderator:.
|
Without any further delay, Dr. Jennie Lou |
Dr. Jennie Lou: Answer: |
Thank you, Kasey! |
blueheron> Question: |
Hi is this only for "Progressive MS" or can questions be related to cognitiveproblems of RRMS? |
Dr. Jennie Lou: |
I will take questions regarding MS |
stacy> Question: |
HOW I CAN I BETTER EXPLAIN MY COGNITIVE PROBLEMS TO MY FAMILY? |
Dr. Jennie Lou: Answer: |
This is an excellent question. Those who have lived with MS for any significant length of time understand the impact of MS on congnition. But congnitive deficits is MS receive much less attention until recently. It is now well accepted that 45 -65% of people with MS have some congnitve impairement |
Dr. Jennie Lou: |
Stacy, you may want to get some brochure from the MS Foundation on this topic to help your family members understand more about the changes happening in your life such as: Problems with memory
Excessive drowsiness
Low levels of initiative or motivation
Emotional "numbness" Poor mental acuity ("fuzzy thinking")
Problems with balance, body awareness, or coordination
Indecisiveness
Problems with planning or organization
Problems with abstract thinking, judgment, or reasoning Problems understanding what you read or hear
Poor concentration
Distractibility
Tangentiality (your mind wanders, you can't stay on task)
Impulsivity or disinhibition (you can't control or restrain your impulses)
Preservation (you "get stuck" on a thought, or a behavior)
Problems processing intense, complex, or fast moving sensory input
Problems with recognition (for instance, you can see it, but it doesn't register)
Processing delays (afterimages, trails, ringing in your ears)
Spatial disorientation (you get lost on the way to a familiar place)
Poor reflective awareness (you're not aware, or conscious of yourself)
Poor selective attention (you can't choose what you want to think about, look at, or listen to) |
Katy> Question: |
Dr, I lose time, but I forget to wear a watch, and even if I wear one I forget to look at it. Do you have any suggestions for me?
Dr. Jennie Lou: Answer: Do you carry a cell phone? or a palm pilot? set the appointments on your cell phone calendar and use the alarm function maybe helpful |
Dr. Jennie Lou: |
Have you tried to use human "reminder", Katy? Let people (friends, family members) around you be aware of your difficulties in memory and ask them to remind you? |
A212Trnsplnt> Question: |
What about those of us whose lives have been turned upside down by significant deficits? |
Dr. Jennie Lou: Answer: |
cognitive rehabilitation |
Dr. Jennie Lou: |
Let me spend some time to elaborate on CR |
Dr. Jennie Lou: |
If you are interested? |
A212Trnsplnt> Question: |
Doctor --- it's not only friends & family that have difficulty understandin the problem ~~~ even doctors don't seem to "get it" |
Dr. Jennie Lou: Answer: |
I hear you loudly and clearly |
Dr. Jennie Lou: |
We need to do more to educate our health care providers! |
glimmer> Question: |
where can I find a list of assistive devices to help me with cognitive problems? |
Dr. Jennie Lou: Answer:
|
Cognitive deficits is difficult to deal with - there is no magic pill for it. You need to discuss with your neurologist for the medications that maybe useful. Today I would like to tackle the non-drug approach with you |
Moderator: |
For those just joining us, we are chatting with Dr. Jennie Lou on strategies to deal with congnitive impairments. Please be patient while Dr. Lou responds to questions. You may send your questions now and at any time throughout the chat. |
A212Trnsplnt> Question: |
Unless I've been scourinng the wrong places in the wrong way(s), there is very little info on cognitive impairments ... |
Dr. Jennie Lou: Answer: |
Kasey, can we get the website of my article on cognitive info for the audience? |
Moderator: |
I'll work on that! |
|
(The article mentioned can be found at: http://www.msfocus.org/
publications/pub_articles_cognitive.html)
Dr. Jennie Lou: Here is a piece of article I wrote. Perhaps this can help raise some awareness of how cognitive impairment can impact your lives
Dr. Jennie Lou: there are also some everyday life strategies to help with the cognitive deficits |
A212Trnsplnt> Question: |
If it's from the MSF, I'm sure I read the article. If I recall, it was one of the only articles I've read that had any type of real substance at all... |
Dr. Jennie Lou: Answer: |
We definitely need to do more |
glimmer> Question: |
I have a friend who uses notebooks to write everything down. A different color notebook for each area of his life. Is that a cognitive strategy? Sometimes he forgets what color is for what though. |
Dr. Jennie Lou: Answer: |
definitely a useful strategy. perhaps need to write down what color is for what on the cover of the notebook? |
A212Trnsplnt> Question: |
I RELOCATED OVER 2 1/2 YEARS AGO --- AND i'VE BEEN DESPERATELY TRYING TO FIND A NEUROPSYCHOLOGIST HERE |
Dr. Jennie Lou: Answer:
|
Send your request to MSF and we will make recommendations |
A212Trnsplnt> Question: |
I'd love nothing more than to not be taking all the drugs I've been taking the past few years! In addition to MS -- I've been diagnosed with primary idiopathic Hypersomnia. I was a CPA who has lost just about all of my organizational skills. |
Dr. Jennie Lou: Answer: |
Have you been evaluated by a neuropsychologist? |
A212Trnsplnt> Question:
|
Had 2 evals ~~ one considerably more extensive, in my opinion, than the other |
vDr. Jennie Lou: Answer:
|
the comprehensive neuropsy testing should be able to pinpoint which area(s) of your cognition is(are) impaired. Then compensatory strategies can be developed accordingly |
Moderator: |
We appear to be having technical difficulties. Please be patient for just a few moments please. |
Teddy> Question: |
Can long term memory an issue in MS.... I seem to have lost alot of past recall? |
Dr. Jennie Lou: Answer: |
working memory deficits is more common in MS, but long term memory relies heavily on retrival |
Dr. Jennie Lou: |
and because MS lesions are generally widely dispersed in teh brain and can cause axonal damgae in addition to demyelination. So yes, long term memory can be affected |
glimmer> Question: |
can I learn to use one area of my brain (or cognition) to compensate for a part that doesn't function properly? can cognitive rehab help me learn to do that? |
Dr. Jennie Lou: Answer: |
yes, there are some medication for memory. You need to discuss this with your neurologist |
Dr. Jennie Lou: |
cognitive rehabilitation can be roughly divided into two major approaches: restorative versus compensatory |
Dr. Jennie Lou: |
The restory approach attempts to restore or strengthen impaired function through direct retraining procedures such as memory drills or exercises to improve attention and concentration. This apporach is based in part on the assumption that the human brain has a degree of plasticity which will allow it to recover from injury, give the right set of circumstances. |
Dr. Jennie Lou: |
the compensatroy approach does not seek to restore impaired abilites. Instead, it attempts to train the individual to function better through the use of strategies |
Teddy> Question: |
Is there any help for long term memory loss? |
Dr. Jennie Lou: Answer: |
Teddy, you need to have a thorough neuropsych testing to find out exactly which area(s) of your cognition is impaired, then the neuropsychologist, or a speech language pathologist, or an occupatinal therapist can help you develp strategies to for your long term memory deficits |
A212Trnsplnt> Question: |
Is Aricept one of the meds you're referring to? |
Dr. Jennie Lou: Answer: |
yes |
A212Trnsplnt> Question: |
Restorative??? But I was told the atrophy is pretty much irreversible. So wouldn't all rehab have to be compensatory? |
Dr. Jennie Lou: Answer: |
yes, restorative. Research has shown that human brain has plasiticity and can be restored in the right condition. |
Dr. Jennie Lou:
|
however, you are right about compensatory rehab part - most rehab programs do focus on compensatory skills - usually more effective than restorative. But this does not prevent us to do restorative training, right? |
CJ>
Question: |
HOW LONG CAN AN EPISODE LAST? |
Dr. Jennie Lou: Answer: |
It really depends on nature of the flare up |
Donna> Question: |
what is the percentage of success with restorative. |
Dr. Jennie Lou: Answer: |
good question. I have seen different nubmers with different programs and skills assess. not very impressive |
Eynat Shevil> Question: |
What works better - compensatory or restory? And for who? |
Dr. Jennie Lou: Answer: |
the current research shows compensatory training has more positive effects |
CJ>
Question: |
I'VE BEEN DEPRESSED AND FATIGUED FOR OVER A MONTH AND ALSO SUICIDIAL AND CAN'T FIND ANYTHING HAPPY AND WAS WONDERING WHAT I CAN DO OR WILL THIS TO PASS? |
Dr. Jennie Lou: Answer: |
you need to see your doctor and tell him/her about your situation ASAP |
Dr. Jennie Lou: |
depression in MS is common and is TREATABLE! |
Dr. Jennie Lou: |
It's been my pleasure chatting with you. Thank you for sharing your questions with me. we definitely need to do more to education the public about MS and cognitive deficits |
Moderator> Question: |
Thank you, Dr. Lou for your time this evening. It's been very informative! |
Dr. Jennie Lou: Answer: |
My pleasure |
Moderator: |
I want to invite you all to visit the MSF Peer-to-Peer forums, where you can continue to discuss and get support from people going through these same issues. |
Moderator: |
Good night to all of you, and thank you so much for joining us and participating this evening! |
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