Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Sam is 78, and he has never been tested for cognitive functions. He was diagnosed with Shy Drager almost 5 years ago. He forgets certain short-term things such as what appointments he has to keep, who is coming that day, what he was going to say--unimportant details etc. He recalls fairly well his mathematics that was his career. However, at his age, I don't know how much of decline is due to his age or to Shy Drager. He has been taking aricept for 2 years, and perhaps it did help in the beginning, but of course, we cannot know how he would be without it. Lou R.At 04:43 PM 6/17/2002 +0000, you wrote: >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 > > >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 17, 2002 Report Share Posted June 17, 2002 Zach, Neuro verbal testing of husband Jan six years ago resulted in scans and MSA/SDS probability. Atrophy and dementia were evident. Guardianship at husband Jan's request was legalized then and permission to transfer from AL. to LA. was granted after proof that finances were adequate to prevent use of indigent funds. VA retesting and scans showed more deterioration and prescribed Aricept was thought to help in Neuros opinion. Jan could still " conserve " chemicals to " perform " briefly during appointments, then crash at home. UTI, bowel problems, falls, dysphagia and dysarthria difficulties, infections including trauma and bone infection around 1996 hip replacement required peg tube installation and round the clock low residue feeding. Rehab docs gave large doses of crushed Sinemet CR for movement. Parkinson drugs had been previously determined ineffective by neurologists and in strange setting plus exhausting routine on changed drugs and diet hallucinated, failed to identify me as wife of 48 years. was utterly confused weeks after return home despite Aricept. A Health Power of Attorney, not Guardianship, might have helped toward corrective action . Health South Rehab franchises doctors were unapproachable both in AL and LA. My calls about CR crushing RX meds thru tubes were changed in LA by VA care teams. Aricept usage was uninterrupted. Jan's intelligence and managerial career served him well while he could write or talk. Yes and no spoken with authority satisfied his mathematician's logic as best percentage for acceptable answers and fine discouraged most questioners. Contacts and conversation attempts were ignored. We gradually developed systems of coughs, grunts and howls for communication. Observation of needs is now necessary. Ritalin was never prescribed, nor were muscle relaxants until contractures spasms produced complete limb rigidity. Internal diaphragm and abdominal spasms are current. Circulation is poor despite passive massage. Coping around dysfunctional cells may have been enhanced by Donepezil HCL/Aricept for two or three years. Verbal testing by LSU Dr. Zweig, Neuro on MSA List roster ceased then and although 5 MG Tab continued to be taken daily each evening deterioration of cognizance and alertness seemed to me to steadily decline. Dosage mornings promoted lethargy and sleep. I Whatever Jan has began twentyfour years ago. Local facilities for brain harvest present difficulties although I am still trying . Hope this helps your neuropsychologist secure scans to provide observable physical information. LA Louise in Springhill grateful for this Forum and constructive correspondence. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Zac, Rob had cognitive testing in 1999, about a year and a half after his diagnosis with SDS/MSA. The results were consistent with " frontostriatal dysfunction " , which is basically what is expected with this type of problem. Here's an excerpt from the report: " He presents now with a generalized slowing of cognition and movement as well as some mild to moderate deficits affecting attention, including working memory, the encoding of materials to be learned, cognitive flexibility and divided attention....no change in verbal IQ but a considerable drop in performance IQ which is likely to be present on the basis of decreased speed of performance and a progression of attention deficits. The current findings could be consistent with frontostriatal dysfunction. Fatigue likely also contributed to the deficits observed. " He tried Ritalin and it did not seem to have any impact. He has not tried aricept, and his doctor has said that he has not had much luck with it in his MSA patients. (Although several on the list have used it with good results.) He does take ProVigil (400mg/day) which does seem to help some. There was a speaker at the conference in Boston who addressed cognitive issues in MSA. Here are the notes I posted on that part of the meeting: ************************************************ 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) *********************************************** I hope this helps address your question. Carol & Rob Lexington, MA 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 > > > 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 17, 2002 Report Share Posted June 17, 2002 Carol, In the notes that you took from Dr. Dan Press I understood it to say that effexor is good to be taking for MSA.Just checking to make sure that is correcst. ???????? Thanks for sharing your notes with us. Connie --- Carol Langer carol.langer@...> wrote: > Zac, > > Rob had cognitive testing in 1999, about a year and > a half after his > diagnosis with SDS/MSA. The results were consistent > with " frontostriatal > dysfunction " , which is basically what is expected > with this type of problem. > Here's an excerpt from the report: > > " He presents now with a generalized slowing of > cognition and movement as > well as some mild to moderate deficits affecting > attention, including > working memory, the encoding of materials to be > learned, cognitive > flexibility and divided attention....no change in > verbal IQ but a > considerable drop in performance IQ which is likely > to be present on the > basis of decreased speed of performance and a > progression of attention > deficits. The current findings could be consistent > with frontostriatal > dysfunction. Fatigue likely also contributed to the > deficits observed. " > > He tried Ritalin and it did not seem to have any > impact. He has not tried > aricept, and his doctor has said that he has not had > much luck with it in > his MSA patients. (Although several on the list > have used it with good > results.) He does take ProVigil (400mg/day) which > does seem to help some. > > There was a speaker at the conference in Boston who > addressed cognitive > issues in MSA. Here are the notes I posted on that > part of the meeting: > > ************************************************ > 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) > > *********************************************** > > I hope this helps address your question. > > Carol & Rob > Lexington, MA > > 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 > > > > > > 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 17, 2002 Report Share Posted June 17, 2002 Connie, Yes, Dr. Press recommended Effexor and Wellbutrin as particularly good for MSA patients. I have in my notes that he advised against SSRI type antidepressants, but I don't remember why. He mentioned antidepressants in the context of depression being one of the factors in cognitive dysfunction. Anecdotally, Rob has taken several different SSRI type antidepressants (Prozac, Paxil, etc.) over the years and has reacted very badly to them. They make his sleep problems (REM behavior disorder -- wild dreams which he acts out) much worse. He is now taking Effexor (75mg/day) as well as ProVigil (400 mg/day) (in addition to his list of blood pressure and Parkinson's stuff) and is doing fairly well. Carol & Rob Lexington, MA 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 > > > > > > > > > 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 17, 2002 Report Share Posted June 17, 2002 Greetings Zac ! I had neuropsychological testing done. For two reasons. First, early on in the progression of this (or any uncertain diagnosis for neurological problems) it is difficult to separate out these symptoms from other problems. So, the testing might show if cognitive problems might exist. Second, it provides a good baseline for later. This can be VERY important is Long Term Disability is an option for someone still active in the workforce. My own testing showed that I function fairly well, but have problems with eye hand coordination. DUH! I *have* been diagnosed with Sporadic OPCA (Olivopontocerebellar Atrophy). In other words, my eye hand coordination STINKS. But otherwise, it showed I am functioning fairly well. Though it did show that after a while I tire suddenly and my own capabilities dramatically plummet. I do not use Aricept or Ritalin. However, my neurologist did recommend Wellbutrin to help clear the mental fog that I seem to have. Amazingly this off label usage does work. Hope that helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Greetings Zac ! I had neuropsychological testing done. For two reasons. First, early on in the progression of this (or any uncertain diagnosis for neurological problems) it is difficult to separate out these symptoms from other problems. So, the testing might show if cognitive problems might exist. Second, it provides a good baseline for later. This can be VERY important is Long Term Disability is an option for someone still active in the workforce. My own testing showed that I function fairly well, but have problems with eye hand coordination. DUH! I *have* been diagnosed with Sporadic OPCA (Olivopontocerebellar Atrophy). In other words, my eye hand coordination STINKS. But otherwise, it showed I am functioning fairly well. Though it did show that after a while I tire suddenly and my own capabilities dramatically plummet. I do not use Aricept or Ritalin. However, my neurologist did recommend Wellbutrin to help clear the mental fog that I seem to have. Amazingly this off label usage does work. Hope that helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Greetings Zac ! I had neuropsychological testing done. For two reasons. First, early on in the progression of this (or any uncertain diagnosis for neurological problems) it is difficult to separate out these symptoms from other problems. So, the testing might show if cognitive problems might exist. Second, it provides a good baseline for later. This can be VERY important is Long Term Disability is an option for someone still active in the workforce. My own testing showed that I function fairly well, but have problems with eye hand coordination. DUH! I *have* been diagnosed with Sporadic OPCA (Olivopontocerebellar Atrophy). In other words, my eye hand coordination STINKS. But otherwise, it showed I am functioning fairly well. Though it did show that after a while I tire suddenly and my own capabilities dramatically plummet. I do not use Aricept or Ritalin. However, my neurologist did recommend Wellbutrin to help clear the mental fog that I seem to have. Amazingly this off label usage does work. Hope that helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Greetings Zac ! I had neuropsychological testing done. For two reasons. First, early on in the progression of this (or any uncertain diagnosis for neurological problems) it is difficult to separate out these symptoms from other problems. So, the testing might show if cognitive problems might exist. Second, it provides a good baseline for later. This can be VERY important is Long Term Disability is an option for someone still active in the workforce. My own testing showed that I function fairly well, but have problems with eye hand coordination. DUH! I *have* been diagnosed with Sporadic OPCA (Olivopontocerebellar Atrophy). In other words, my eye hand coordination STINKS. But otherwise, it showed I am functioning fairly well. Though it did show that after a while I tire suddenly and my own capabilities dramatically plummet. I do not use Aricept or Ritalin. However, my neurologist did recommend Wellbutrin to help clear the mental fog that I seem to have. Amazingly this off label usage does work. Hope that helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 17, 2002 Report Share Posted June 17, 2002 Greetings Zac ! I had neuropsychological testing done. For two reasons. First, early on in the progression of this (or any uncertain diagnosis for neurological problems) it is difficult to separate out these symptoms from other problems. So, the testing might show if cognitive problems might exist. Second, it provides a good baseline for later. This can be VERY important is Long Term Disability is an option for someone still active in the workforce. My own testing showed that I function fairly well, but have problems with eye hand coordination. DUH! I *have* been diagnosed with Sporadic OPCA (Olivopontocerebellar Atrophy). In other words, my eye hand coordination STINKS. But otherwise, it showed I am functioning fairly well. Though it did show that after a while I tire suddenly and my own capabilities dramatically plummet. I do not use Aricept or Ritalin. However, my neurologist did recommend Wellbutrin to help clear the mental fog that I seem to have. Amazingly this off label usage does work. Hope that helps. Regards, =jbf= B. Fisher Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2002 Report Share Posted June 18, 2002 Sorry my computer repeated this reply so often. =jbf= 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.