Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Zac: Terry has had psych testing twice. It was part of the overall diagnostic process to get to the Dx of MSA/SND. She did well on the tests with no obvious deficits. However, since the tests it is becoming clear that she is subject to sensory overloads - visual, auditory, and cognitive and tears up, or crys, when challenged. As a result, we believe she is tending toward single tasking abilities and away from multi tasking. From a cognitive point of view, she is still OK providing she can process things at her own pace. She also exhibits apathy, which is an important symptom in her case. Many meds have been tried for this without success. Hope this helps. Sorry to be so slow in response; been in overload my self recently. Message: 13 Date: Mon, 17 Jun 2002 16:43:16 -0000 Subject: Neuropsychology Testing How many of you have had neuropsychology testing for cognitive difficulties? If so, what did the tests show in your case? If you have not been tested and you experience difficulties, why have you not been tested? Did you choose not to get tested, or did your doctor never order the testing? I thought it would be interesting to get people's opinion on this side of illness. The cognitive decline aspect of disorders like MSA (quite often areas such as retrieval of memory and executive functioning are affected) was a scary part of the illness for me. Back in April, I went through the battery of neuropsychology testing that documented this decline and showed a frontal-temporal dysfunction. Since then, I have been able to work on ways to get around the problem and utilize my strengths. Additionally, I seem to be one of the lucky patients who benefit from Aricept (FDA approved for Alzheimer's but being tried in some other neurological illnesses like MS, MSA, etc.) Other questions: Has anybody on the board benefitted from Aricept for two years or more? Does anyone prefer Ritalin over Aricept who has tried both? (Please also include whether you have had testing.) Zac Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 , No problem! I finally figured it was the same one after reading all the way through the second one. My poor poor lost of brain cells. God bless, Belinda > Sorry my computer repeated this reply so often. > > =jbf= Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 , I have never been neuropsychology tested but I sound just like this. At Supper time I have to be able to get my food first before anyone comes in there or I do bezerk. I can't stand to be in crowds, be where music is blaring, I can't stand yelling or fighting,There are so many things that seem to make me very nervous and I can cry at the drop of a hat. I can't handle any kind of commotion. Which doctor do you ask to have this test done? I am glad that Zac mentioned this or was ? Whoever it was thank you. I believe I am in desperate need of taking it. Thanks, Belinda > Zac: > > Terry has had psych testing twice. It was part of the overall diagnostic > process to get to the Dx of MSA/SND. She did well on the tests with no > obvious deficits. However, since the tests it is becoming clear that she > is subject to sensory overloads - visual, auditory, and cognitive and tears > up, or crys, when challenged. As a result, we believe she is tending > toward single tasking abilities and away from multi tasking. From a > cognitive point of view, she is still OK providing she can process things > at her own pace. > > She also exhibits apathy, which is an important symptom in her case. Many > meds have been tried for this without success. > > Hope this helps. Sorry to be so slow in response; been in overload my self > recently. > > Message: 13 > Date: Mon, 17 Jun 2002 16:43:16 -0000 > From: " carterzachery " > Subject: Neuropsychology Testing > > > How many of you have had neuropsychology testing for cognitive > difficulties? If so, what did the tests show in your case? > > > If you have not been tested and you experience difficulties, why have > you not been tested? Did you choose not to get tested, or did your > doctor never order the testing? I thought it would be interesting to > get people's opinion on this side of illness. > > > The cognitive decline aspect of disorders like MSA (quite often areas > such as retrieval of memory and executive functioning are affected) > was a scary part of the illness for me. Back in April, I went through > the battery of neuropsychology testing that documented this decline > and showed a frontal-temporal dysfunction. Since then, I have been > able to work on ways to get around the problem and utilize my > strengths. Additionally, I seem to be one of the lucky patients who > benefit from Aricept (FDA approved for Alzheimer's but being tried in > some other neurological illnesses like MS, MSA, etc.) > > > Other questions: > > > Has anybody on the board benefitted from Aricept for two years or > more? > > > Does anyone prefer Ritalin over Aricept who has tried both? > > > (Please also include whether you have had testing.) > > > Zac > > > Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Greetings Belinda, Unfortunately, the neuropsychological testing did NOT deal with problems with overloaded senses. My neurologist has seen this before, but has no real suggestions for it. Instead, I try to learn coping mechanisms. I use earplugs in restaurants and church (ok, not during the sermon :-). Seems silly, but it works. I learn to find corners. I try to minimize my field of view ... So I sit at the end of a table, so I don't have to flit my eyes or head about to follow conversations ... As best as I can do that. I accept that in most noisy restaurants I will never again be able to hear anyone again. It is difficult for everyone. I avoid VERY busy environments and crowds. But I do force myself to spend time with my family in some of these environments. We need time to share our experiences. Anyway, my two cents on the matter. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 , Thank you so much for replying. I was happy to hear that I am not alone in all of this. I know that might sound horrible but you know what I mean. I have avoided crowds, resturants that have music blaring or even music playing louder than I can stand it. I can't even stand it in my own home. I have teenagers and at first I thought I am just getting old but it wouldn't have bothered me this much. There is no problems so far getting my food first once I explained to everyone my problems with the commotion. We always eat by making our plate and then sitting at the table. Since there are 9 people in my house now I go in my bedroom and eat because I can't stand the commotion of eating at the table. I have found during church if the pastor goes much over the hour my eyes start closing because I try so hard to listen to every word. It wears me out. We also have a time in church where everyone gets up and goes around and shakes hands with everyone. I use to be able to do that but now I just stay in my chair and let people come to me. I can't stand if a crowd comes at one time either but I try to endure it anyways because I know they all want to hug me because they love me. That is why I go to church there anyways because they care about each other. Well, I go there also because they believe like I do. I have noticed if I go to my garden at times that it gives me a peace which I need. I have always felt closer to God while working in the garden. I also noticed if I get more than 2 people around talking instead of looking at each one it is easier if I just look at the floor. I can listen to all without making my head hurt. You are very right we do need to be with our family as much as possible. I guess I am also blessed that I have friends one at a time take me to lunch and then maybe take me to WalMart while they do their shopping of things they forgot to get before. They don't keep me out long but I get out. My husband also will take me to a sports game that one of my kids might be playing but he will only take me to one of them a day so it doesn't overload me. Usually after that I have to come home and take a nap. I usually get alot of hugs there also. I must be a huggable person hehe Well, enough rambling on. Thanks again. Belinda > Greetings Belinda, > > Unfortunately, the neuropsychological testing did NOT deal with problems > with overloaded senses. My neurologist has seen this before, but has no > real suggestions for it. Instead, I try to learn coping mechanisms. I > use earplugs in restaurants and church (ok, not during the sermon :-). > Seems silly, but it works. I learn to find corners. I try to minimize > my field of view ... So I sit at the end of a table, so I don't have to > flit my eyes or head about to follow conversations ... As best as I can > do that. I accept that in most noisy restaurants I will never again be > able to hear anyone again. It is difficult for everyone. I avoid VERY > busy environments and crowds. But I do force myself to spend time with > my family in some of these environments. We need time to share our > experiences. > > Anyway, my two cents on the matter. > > > Regards, > =jbf= > > B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Belinda: Zac in his earlier posting has it exactly right in his earlier posting. In our case the psychologist was right in the Department of Neurology as a Co Director of the Behavioral Unit. They sit in the morning staff meeting before patient appointments. The sharing is outstanding. This psychologist has been extremely helpful to both Terry and myself in understanding the ins and out of MSA. Go for the testing. Everything helps with this miserable disease. Message: 4 Date: Tue, 18 Jun 2002 19:11:12 -0000 Subject: Re: Neuropsychology Testing , I have never been neuropsychology tested but I sound just like this. At Supper time I have to be able to get my food first before anyone comes in there or I do bezerk. I can't stand to be in crowds, be where music is blaring, I can't stand yelling or fighting,There are so many things that seem to make me very nervous and I can cry at the drop of a hat. I can't handle any kind of commotion. Which doctor do you ask to have this test done? I am glad that Zac mentioned this or was ? Whoever it was thank you. I believe I am in desperate need of taking it. Thanks, Belinda Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 : I can validate your observations completely. I don't have as much expereince yet as you do, but your approach seems valid. I find that Terry intuitively and actively avoids these situations as simply being something she doesn't enjoy. Message: 14 Date: Tue, 18 Jun 2002 17:15:47 -0400 Subject: RE: Re: Neuropsychology Testing Greetings Belinda, Unfortunately, the neuropsychological testing did NOT deal with problems with overloaded senses. My neurologist has seen this before, but has no real suggestions for it. Instead, I try to learn coping mechanisms. I use earplugs in restaurants and church (ok, not during the sermon :-). Seems silly, but it works. I learn to find corners. I try to minimize my field of view ... So I sit at the end of a table, so I don't have to flit my eyes or head about to follow conversations ... As best as I can do that. I accept that in most noisy restaurants I will never again be able to hear anyone again. It is difficult for everyone. I avoid VERY busy environments and crowds. But I do force myself to spend time with my family in some of these environments. We need time to share our experiences. Anyway, my two cents on the matter. Regards, =jbf= B. Fisher Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Carol and Rob: I have read and reread your notes from Dr. Press's presentation several times. They are copied below after ********. His comments seem to fit Terry's situation quite well. Also, many of the subsequent posts seems to confirm his observations for others as well. The comments about " working memory " and that " Most types of cognition are spared in MSA. These functions usually remain intact: - Short term memory - Long term memory - Overall intelligence - Language function (different from speech) " correlate very well with Terry's behavior. Add to this the " sensory overload " factor and its effects, and you get a pretty good picture as I see it. Thanks for taking the notes in Boston. I will be very interested in the transcripts of the conference. Has anyone heard as to the availability of the tapes or transcripts? ************** I took especially good notes in this part of the meeting because it's a problem that affects Rob and because Dr. Dan Press did such a good job of explaining the issues. Here goes: Cognitive issues: - Occur only in some patients - Only in " frontal lobe " tasks - Does not correlate with the duration of the illness - NOT dementia Most types of cognition are spared in MSA. These functions usually remain intact: - Short term memory - Long term memory - Overall intelligence - Language function (different from speech) Frontal Lobe functions can be impaired: - The frontal lobe contains the " working memory " , or the ability to maintain information on-line. - This includes the executive function, which is the ability to order and manipulate tasks for maximum efficiency. Working Memory - Served by a frontal-subcortical network of regions of the brain. - DOPAMINE CRITICAL FOR WORKING MEMORY FUNCTION (emphasis is mine!) Possible contributors to working memory deficits: - Normal aging (having a senior moment!) - Depression - Sleep problems Additional causes in MSA - Related to MSA pathology - Subcortical deficit due to basal ganglia dysfunction - Other medications Treatment for working memory deficit - Behavioral - Pharmacological Behavioral - Avoid multi-tasking - Break up tasks into parts, write them out, use as a checklist - Use organizers (electronic or paper) - Avoid sleep depravation Pharmacological - Stimulants - Ritalin - Adderal - Antidepressants - Not SSRI's - Wellbutrin or Effexor - Provigil (modafinil) Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 , I'm glad you found my notes helpful. I think of working memory like RAM on a computer. In MSA patients, the RAM is limited and causes slower processing. When too much input comes in at once, the RAM can't handle it and basically shuts down. Rob does have problems with working memory and it's very frustrating for all of us. For example: My mother (age 86) has blood pressure problems and is seeing a specialist. I like to accompany her to her appointments when I can. One day recently she had an appointment and Rob had an appointment on the same day. (Of course they were in totally different locations.) In order to be with them both Rob had to accompany me to the hospital where my mother had her appointment. We had discussed all this the day before and he had agreed this was the best plan. When we arrived at the hospital where my mother had her appointment he looked at me and said, " Why are we here? " My response was, " to be with my mom for her appointment. " But my thoughts were along the lines of " how can you not remember the conversation we had yesterday!? " and " Oh my God, he doesn't remember the conversation we had just hours ago! " The cognitive stuff is the most difficult for me to handle. I lose patience then I'm horrified that I've snapped at Rob because he can't help it. It scares me. It was comforting to hear Dr. Press' talk because he noted that the severity does not necessarily get worse as the disease progresses, and he very clearly noted that it is NOT dementia. As far as the tapes are concerned, I have some news -- I FINALLY got hold of the guy who taped the conference and I will meet with him next week to get the editing equipment and learn how to use it. I will then listen to the original tapes (which I have right here on my desk) and note which segments are to be excluded (that will only be long pauses and unintelligible stuff) and give the whole mess back to him to create a master. That will then be duplicated so the tapes will be available to the group. My best guess is that they will be available in 4 to 6 weeks, but I'm not really sure. Carol & Rob Lexington, MA Re: Neuropsychology Testing > Carol and Rob: > > I have read and reread your notes from Dr. Press's presentation several > times. They are copied below after ********. His comments seem to fit > Terry's situation quite well. Also, many of the subsequent posts seems to > confirm his observations for others as well. > > The comments about " working memory " and that " Most types of cognition are > spared in MSA. These functions usually remain intact: - Short term memory - > Long term memory - Overall intelligence - Language function (different from > speech) " correlate very well with Terry's behavior. > > Add to this the " sensory overload " factor and its effects, and you get a > pretty good picture as I see it. > > Thanks for taking the notes in Boston. > > I will be very interested in the transcripts of the conference. > > Has anyone heard as to the availability of the tapes or transcripts? > ************** > > I took especially good notes in this part of the meeting because it's a > problem that affects Rob and because Dr. Dan Press did such a good job of > explaining the issues. Here goes: > > > > Cognitive issues: > - Occur only in some patients > - Only in " frontal lobe " tasks > - Does not correlate with the duration of the illness > - NOT dementia > > > > Most types of cognition are spared in MSA. These functions usually remain > intact: > - Short term memory > - Long term memory > - Overall intelligence > - Language function (different from speech) > > > > Frontal Lobe functions can be impaired: > - The frontal lobe contains the " working memory " , or the ability to > maintain information on-line. > - This includes the executive function, which is the ability to > order and manipulate tasks for maximum efficiency. > > > > Working Memory > - Served by a frontal-subcortical network of regions of the brain. > - DOPAMINE CRITICAL FOR WORKING MEMORY FUNCTION (emphasis is mine!) > > > > Possible contributors to working memory deficits: > - Normal aging (having a senior moment!) > - Depression > - Sleep problems > > > > Additional causes in MSA > - Related to MSA pathology > - Subcortical deficit due to basal ganglia dysfunction > - Other medications > > > > Treatment for working memory deficit > - Behavioral > - Pharmacological > > > > Behavioral > > > > - Avoid multi-tasking > - Break up tasks into parts, write them out, use as a checklist > - Use organizers (electronic or paper) > - Avoid sleep depravation > > > > Pharmacological > > > > - Stimulants > - Ritalin > - Adderal > > > > - Antidepressants > - Not SSRI's > - Wellbutrin or Effexor > > > > - Provigil (modafinil) > > > > > Sennewald Charlottesville, Virginia > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 Carol and Rob: Yes, I frequently experience the same feeling you do when Terry asks me something we have already discussed, or has a minor accident from doing something she really knows - or should know - she should not be doing. It is difficult to internalize this new understanding and then act on it without showing the anger and/or frustration. I am working hard to separate the feeling from my responses in these situations. Again, this is where the list helps out by citing the same experience others are having. We need to remember: the RAM is small and frequently full, or already overloaded. Keep us all posted on the tapes, or perhaps a transcript. Message: 19 Date: Wed, 19 Jun 2002 10:06:45 -0400 Subject: Re: Re: Neuropsychology Testing , I'm glad you found my notes helpful. I think of working memory like RAM on a computer. In MSA patients, the RAM is limited and causes slower processing. When too much input comes in at once, the RAM can't handle it and basically shuts down. Rob does have problems with working memory and it's very frustrating for all of us. For example: My mother (age 86) has blood pressure problems and is seeing a specialist. I like to accompany her to her appointments when I can. One day recently she had an appointment and Rob had an appointment on the same day. (Of course they were in totally different locations.) In order to be with them both Rob had to accompany me to the hospital where my mother had her appointment. We had discussed all this the day before and he had agreed this was the best plan. When we arrived at the hospital where my mother had her appointment he looked at me and said, " Why are we here? " My response was, " to be with my mom for her appointment. " But my thoughts were along the lines of " how can you not remember the conversation we had yesterday!? " and " Oh my God, he doesn't remember the conversation we had just hours ago! " The cognitive stuff is the most difficult for me to handle. I lose patience then I'm horrified that I've snapped at Rob because he can't help it. It scares me. It was comforting to hear Dr. Press' talk because he noted that the severity does not necessarily get worse as the disease progresses, and he very clearly noted that it is NOT dementia. As far as the tapes are concerned, I have some news -- I FINALLY got hold of the guy who taped the conference and I will meet with him next week to get the editing equipment and learn how to use it. I will then listen to the original tapes (which I have right here on my desk) and note which segments are to be excluded (that will only be long pauses and unintelligible stuff) and give the whole mess back to him to create a master. That will then be duplicated so the tapes will be available to the group. My best guess is that they will be available in 4 to 6 weeks, but I'm not really sure. Carol & Rob Lexington, MA Sennewald Charlottesville, Virginia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 19, 2002 Report Share Posted June 19, 2002 I hope that each of us understands the greaat gift that you are giving the group in taking the time to edit these tapes. I look forward to hearing them. Marilyn in TN > > Reply-To: shydrager > Date: Wed, 19 Jun 2002 10:06:45 -0400 > To: shydrager > > Subject: Re: Re: Neuropsychology Testing > > " As far as the tapes are concerned, I have some news -- I FINALLY got hold of > the guy who taped the conference and I will meet with him next week to get > the editing equipment and learn how to use it. I will then listen to the > original tapes (which I have right here on my desk) and note which segments > are to be excluded (that will only be long pauses and unintelligible stuff) > and give the whole mess back to him to create a master. That will then be > duplicated so the tapes will be available to the group. My best guess is > that they will be available in 4 to 6 weeks, but I'm not really sure. > > Carol & Rob > Lexington, MA " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Greetings Carol, You noted that the memory issues are not dementia, but appear to be similar to limited RAM on a computer. Actually as a computer specialist and a patient of Sporadic OPCA, I would liken it to having a perfectly good memory, but the system that goes and finds the hunk of memory the computer needs is failing. All too often, it must rebuild those pointers to recall memory. It often pulls the wrong memory, so must try again. Or it is just working slow. I have problems very similar to this. In my case, I know that degeneration of my Cerebellum is involved. My memory is fine. But if I am tired, or just have a bad day, accessing that memory is problematic. Interestingly, researchers only recently started to use MRIs and PET scans to uncover just how important the cerebellum is in memory retrieval. In retrospect it only makes sense. The cerebellum is a WONDERFUL organ designed around making common tasks simple. It now appears things as simple as word retrieval is routed through the cerebellum. Evolution took advantage of that powerful organ to help us organize and manage retrieval of memory. Not dementia. But definitely impaired retrieval. This only makes multiple task processing all that much worse. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 , So maybe it's bad BIOS?? ;-) Okay, not a perfect analogy, but you get the idea.... Carol & Rob RE: Re: Neuropsychology Testing > Greetings Carol, > > You noted that the memory issues are not dementia, but appear to be > similar to limited RAM on a computer. > > Actually as a computer specialist and a patient of Sporadic OPCA, I > would liken it to having a perfectly good memory, but the system that > goes and finds the hunk of memory the computer needs is failing. All > too often, it must rebuild those pointers to recall memory. It often > pulls the wrong memory, so must try again. Or it is just working slow. > > I have problems very similar to this. In my case, I know that > degeneration of my Cerebellum is involved. My memory is fine. But if I > am tired, or just have a bad day, accessing that memory is problematic. > > Interestingly, researchers only recently started to use MRIs and PET > scans to uncover just how important the cerebellum is in memory > retrieval. In retrospect it only makes sense. The cerebellum is a > WONDERFUL organ designed around making common tasks simple. It now > appears things as simple as word retrieval is routed through the > cerebellum. Evolution took advantage of that powerful organ to help us > organize and manage retrieval of memory. > > Not dementia. But definitely impaired retrieval. This only makes > multiple task processing all that much worse. > > > Regards, > =jbf= > > B. Fisher > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Marilyn, It is my pleasure to do it. I'm delighted to be able to help in any way that I can. Hugs, Carol Re: Re: Neuropsychology Testing > > > > " As far as the tapes are concerned, I have some news -- I FINALLY got hold of > > the guy who taped the conference and I will meet with him next week to get > > the editing equipment and learn how to use it. I will then listen to the > > original tapes (which I have right here on my desk) and note which segments > > are to be excluded (that will only be long pauses and unintelligible stuff) > > and give the whole mess back to him to create a master. That will then be > > duplicated so the tapes will be available to the group. My best guess is > > that they will be available in 4 to 6 weeks, but I'm not really sure. > > > > Carol & Rob > > Lexington, MA " > > > > > If you do not wish to belong to shydrager, you may > unsubscribe by sending a blank email to > > shydrager-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2002 Report Share Posted June 20, 2002 Zac: My husband, Ken, who passed away a little over a year ago had neurological testing several times during the progression of his disease. The last time was just before he started Aricept and it showed he was in the first to fifth percentile in every area except intelligence, and that still tested over 120. Since he had always been considered to have an unusually intelligent mind, that too might have been a little lower than he had tested as a young man, but it was surely well above average even then. After he started taking Aricept, most of his memory returned as well as his ability to read and to talk clearly. The craziness that had accompanied his Dementia pretty much disappeared. He took Aricept for over three years, and although he declined physically, and he had trouble being understood when he spoke during the last few months of his life, the dementia never returned. He had Hospice people coming in for the last six months of his life, and they all felt that his responses were always appropriate which was a far cry from before Aricept. However, on autopsy, we found that he did not have MSA but Diffuse Lewy Body Disease and that is probably why the Aricept worked so well for him. Barbara Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.