RE: Problems with Memory/Communication

[Guest guest]

,

Take the time to write a list of what you need your lawyer to know. Make sure that you emphasize what YOU CANNOT DO!

Tell him the changes that have happened, and the progression you see in yourself.

You can have a couple of friends or a family member write down the changes they see you going through-- (SSDI requires this).

If the leg weakness is getting worse, and you fear taking a fall, let him know that. If you've lost your sense of balance and are exhausted just taking a shower-- let him know. If your sense of direction is screwed up-- and you find yourself driving down the highway with no recollection of where you were going-- tell him. Emphasize that this is not like the "geez, I don't remember going thru the stoplight at xx intersection because you've got something on your mind" explain that it is more a disorientation to space and time-- and is worse if you've been doing more than you can do.

Explain that when you answer the phones at work, that you find yourself asking the caller who they are, what they need-- time and again. (Bad Bad scoobies when you have to work)

As for the sleep disruptions- we seem to have a disposition for sleep apnea. Between the weight gain of prednisone, and our compromised lung issues, and the fact that we don't breath as deeply anyway when we sleep (true even for totally healthy people) we end up waking up multiple times each night-- gasping for air. This too complicates our memory issues. No oxygen to brain equals lower brain function. Add sleeping meds, and it can make it much much worse!

Let me know if you need more info,

Blessings,

Tracie

NS Co-owner/moderator

To: Neurosarcoidosis Sent: Sat, April 3, 2010 11:39:08 AMSubject: Problems with Memory/Communication

Hello All:Not too long ago someone posted info regarding neurosarcoidosis and the inability to relate over the phone because of delayed brain processing: For example, I can no longer answer phones in the office because words don't come readily or I tend to forget what I'm saying or to whom I'm speaking. The information that was posted was instrumental to me in that it explained what I am experiencing. I have Arnaud Chiari malformation of the brain in addition to neurosarcoidosis.Also, I need to know what to tell my lawyers about my problems when I meet with him; therefore, I am requesting input on what to mention so that I leave nothing of importance out of the discussion. When it comes to talking with anyone, I can't seem to find the words I want to use. I forget the third word before I have spoken the fourth word. Please ... someone help me obtain the information I need as soon as possible, as my scheduled appointment is coming up

this week!I am now back on Prednisone 5.0 mg because pain returned; but now with the Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep habit is out of whack: I often awaken several times during the wee hours of the night!! Although I am going through all of this, I still know that my God is in charge and that I am in His capable hands! To all of you, have a blessed Resurrection Sunday!!Always, (pronounced Kah'ren) L. -Maye (Baltimore MD)

[Guest guest]

Hello,

On a good day, after rest and caffeine, and blessed with the luck of mental clarity and

memory for a time I can talk about a subject for an hour and sound reasonably competent.

When it comes time to listen, type, or otherwise interface with the world outside my own

head though things tend to fall apart. Describing this is difficult. Today I realized that

whether it's walking, typing, hearing, seeing, or even thinking at times, it's as if the things

I used to do automatically with one part of my brain I now need to do with my conscious

mind, explaining the steps to myself one at a time. For things like listening I'm just not

able to do that fast enough sometimes.

I read about a man who had a blog page. On the basis of that page he was determined to

have good cognitive skills and was denied government benefits. Unfortunately

they have no idea of the difficulties people can experience and basing his abilities on what

he writes (possibly laboriously) during the best moments of his day is tragic because the

rest of his day is not like that.

I personally have enormous difficulty now with multitasking and also dealing with multiple

voices and/or sounds. A physical job is not possible because my arms and legs have no

stamina. Working in an alternative desk job such as a phone center seems impossible to

me because of the cognitive processing issues. If worse comes to worse I'll take one of

those jobs and let them see for themselves just how bad those issues are.

It seems critical we communicate to doctors and attorneys what kind of things we can no

longer do and why. I don't know if what I wrote will help you in that or not but at worst you

might know you're not alone.

I still don't know if I have sarc or ms but my new neuro is moving fast.

Cheers,

Darrin

To: Neurosarcoidosis From: specialk2002ac@...Date: Sat, 3 Apr 2010 18:39:08 +0000Subject: Problems with Memory/Communication

Hello All:Not too long ago someone posted info regarding neurosarcoidosis and the inability to relate over the phone because of delayed brain processing: For example, I can no longer answer phones in the office because words don't come readily or I tend to forget what I'm saying or to whom I'm speaking. The information that was posted was instrumental to me in that it explained what I am experiencing. I have Arnaud Chiari malformation of the brain in addition to neurosarcoidosis.Also, I need to know what to tell my lawyers about my problems when I meet with him; therefore, I am requesting input on what to mention so that I leave nothing of importance out of the discussion. When it comes to talking with anyone, I can't seem to find the words I want to use. I forget the third word before I have spoken the fourth word. Please ... someone help me obtain the information I need as soon as possible, as my scheduled appointment is coming up this week!I am now back on Prednisone 5.0 mg because pain returned; but now with the Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep habit is out of whack: I often awaken several times during the wee hours of the night!! Although I am going through all of this, I still know that my God is in charge and that I am in His capable hands! To all of you, have a blessed Resurrection Sunday!!Always, (pronounced Kah'ren) L. -Maye (Baltimore MD)

[Guest guest]

Darrin, thank you so very much for sharing these addl ideas with . So much of what you said about multitasking and multiple voices and being able to discern what is being said when in a group situation-- are all the same issues for me.

I've even gotten to a place where I look at coughing and peeing at the same time-- (thank god for depends) as multi-tasking- and it sucks.

Much of the time, I'll put together an email for all of us, it looks great, but when I go back and reread it-- I'm amazed at how disjointed it seems. Add the exhaustion-- and I'm toast.

Like so many of us, my days and nights seem to have reversed themself, and I'll sleep all day, then be up until 2 or 3 in the morning. I know part of that is figuring that if I'm not in bed tossing and turning-- then at least my husband is getting some sleep.

This is a tough, and humbling disease-- and explaining that you feel like you have an early onset dementia is hard = at best. I've found that having a friend go with me, and explaining what they see is always a good idea. Not to mention that you can then have another body blocking the door so they have to answer your questions.

BTW, I've gone as far as telling my neuro that he has had me waiting for xx 3 1/2 hrs-- so he will not leave the room to take that call until I'm done. He didn't like it-- and I did ask him if someone's life was on the line, or if it was a general "consult" -- so that I knew I wasn't preventing someone from critical care.

We pay these docs-- even with insurance, and they are "employed" by us. We can fire them-- and their egos generally don't like this. So what...

Last tiame I was in-- he got impatient with me because I decided to talk to him in the way I explain stuff to all of us- basics-- and he figured he knew all that so didn't have to listen to me lecture him on medicine 101--- that was when I told him that if he'd explain it to me, I wouldn't have to spend all my time finding the answers to the questions he was too busy to answer. pissed him off with that also. so what....

My point-- I think I had one.. is that we need to share all the challenges. The topics of loss of concentration, multitasking, problem solving, sensory overload, exhaustion that would choke an elephant, sexual disfunction, anger, overcompensation, compulsiveness, inability to make decisions, not being able to answer simple questions--ie. do you want tea or coffee- can just totally set off the day- (I can handle "what would you like to drink-"- but can't handle the coffee tea question) so that is how life is for me.

Hope it helps, and I truly love that you all are helping each other with these issues-- it takes such a huge load off the moderators.

Sincerely,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Sat, April 3, 2010 1:04:09 PMSubject: RE: Problems with Memory/Communication

Hello, On a good day, after rest and caffeine, and blessed with the luck of mental clarity andmemory for a time I can talk about a subject for an hour and sound reasonably competent. When it comes time to listen, type, or otherwise interface with the world outside my ownhead though things tend to fall apart. Describing this is difficult. Today I realized that whether it's walking, typing, hearing, seeing, or even thinking at times, it's as if the thingsI used to do automatically with one part of my brain I now need to do with my conscious mind, explaining the steps to myself one at a time. For things like listening I'm just notable to do that fast enough sometimes. I read about a man who had a blog page. On the basis of that page he was determined tohave good cognitive skills and was denied government benefits. Unfortunatelythey have no idea of the

difficulties people can experience and basing his abilities on whathe writes (possibly laboriously) during the best moments of his day is tragic because therest of his day is not like that. I personally have enormous difficulty now with multitasking and also dealing with multiplevoices and/or sounds. A physical job is not possible because my arms and legs have nostamina. Working in an alternative desk job such as a phone center seems impossible tome because of the cognitive processing issues. If worse comes to worse I'll take one ofthose jobs and let them see for themselves just how bad those issues are. It seems critical we communicate to doctors and attorneys what kind of things we can nolonger do and why. I don't know if what I wrote will help you in that or not but at worst youmight know you're not alone. I still don't know if I have sarc or ms but my new

neuro is moving fast. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 3 Apr 2010 18:39:08 +0000Subject: Problems with Memory/Communicatio n

Hello All:Not too long ago someone posted info regarding neurosarcoidosis and the inability to relate over the phone because of delayed brain processing: For example, I can no longer answer phones in the office because words don't come readily or I tend to forget what I'm saying or to whom I'm speaking. The information that was posted was instrumental to me in that it explained what I am experiencing. I have Arnaud Chiari malformation of the brain in addition to neurosarcoidosis.Also, I need to know what to tell my lawyers about my problems when I meet with him; therefore, I am requesting input on what to mention so that I leave nothing of importance out of the discussion. When it comes to talking with anyone, I can't seem to find the words I want to use. I forget the third word before I have spoken the fourth word. Please ... someone help me obtain the information I need as soon as possible, as my scheduled

appointment is coming up this week!I am now back on Prednisone 5.0 mg because pain returned; but now with the Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep habit is out of whack: I often awaken several times during the wee hours of the night!! Although I am going through all of this, I still know that my God is in charge and that I am in His capable hands! To all of you, have a blessed Resurrection Sunday!!Always, (pronounced Kah'ren) L. -Maye (Baltimore MD)

[Guest guest]

Hi Tracie,

If someone asked me if I wanted coffee or tea I'd probably sit blankly for a moment, realize

people were looking at me, and say,'Were you talking to me?'.

That's not always what happens but I'm getting very used to people rolling their eyes.

I share the sleep issues. For some reason when sleeping I always get really hot no matter

what I do and heat makes me symptomatic. I wake up in a panic and can't get back to sleep

until I've gotten up and cooled down for a few hours. And of course doing anything at all

during the day can tired me out to the point of needing a nap with no warning. Sometimes

I take a nap in the middle of an email.

You make some great points. What we go thru daily reminds me of a joke often told by one

of my old friends:

'The doctor gave me medicine for my memory problems but I forgot to take it.'

Cheers,

Darrin

To: Neurosarcoidosis From: tiodaat2001@...Date: Sat, 3 Apr 2010 16:30:57 -0700Subject: Re: Problems with Memory/Communication

Darrin, thank you so very much for sharing these addl ideas with . So much of what you said about multitasking and multiple voices and being able to discern what is being said when in a group situation-- are all the same issues for me.

I've even gotten to a place where I look at coughing and peeing at the same time-- (thank god for depends) as multi-tasking- and it sucks.

Much of the time, I'll put together an email for all of us, it looks great, but when I go back and reread it-- I'm amazed at how disjointed it seems. Add the exhaustion-- and I'm toast.

Like so many of us, my days and nights seem to have reversed themself, and I'll sleep all day, then be up until 2 or 3 in the morning. I know part of that is figuring that if I'm not in bed tossing and turning-- then at least my husband is getting some sleep.

This is a tough, and humbling disease-- and explaining that you feel like you have an early onset dementia is hard = at best. I've found that having a friend go with me, and explaining what they see is always a good idea. Not to mention that you can then have another body blocking the door so they have to answer your questions.

BTW, I've gone as far as telling my neuro that he has had me waiting for xx 3 1/2 hrs-- so he will not leave the room to take that call until I'm done. He didn't like it-- and I did ask him if someone's life was on the line, or if it was a general "consult" -- so that I knew I wasn't preventing someone from critical care.

We pay these docs-- even with insurance, and they are "employed" by us. We can fire them-- and their egos generally don't like this. So what...

Last tiame I was in-- he got impatient with me because I decided to talk to him in the way I explain stuff to all of us- basics-- and he figured he knew all that so didn't have to listen to me lecture him on medicine 101--- that was when I told him that if he'd explain it to me, I wouldn't have to spend all my time finding the answers to the questions he was too busy to answer. pissed him off with that also. so what....

My point-- I think I had one.. is that we need to share all the challenges. The topics of loss of concentration, multitasking, problem solving, sensory overload, exhaustion that would choke an elephant, sexual disfunction, anger, overcompensation, compulsiveness, inability to make decisions, not being able to answer simple questions--ie. do you want tea or coffee- can just totally set off the day- (I can handle "what would you like to drink-"- but can't handle the coffee tea question) so that is how life is for me.

Hope it helps, and I truly love that you all are helping each other with these issues-- it takes such a huge load off the moderators.

Sincerely,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis " <neurosarcoidosis >Sent: Sat, April 3, 2010 1:04:09 PMSubject: RE: Problems with Memory/Communication

Hello, On a good day, after rest and caffeine, and blessed with the luck of mental clarity andmemory for a time I can talk about a subject for an hour and sound reasonably competent. When it comes time to listen, type, or otherwise interface with the world outside my ownhead though things tend to fall apart. Describing this is difficult. Today I realized that whether it's walking, typing, hearing, seeing, or even thinking at times, it's as if the thingsI used to do automatically with one part of my brain I now need to do with my conscious mind, explaining the steps to myself one at a time. For things like listening I'm just notable to do that fast enough sometimes. I read about a man who had a blog page. On the basis of that page he was determined tohave good cognitive skills and was denied government benefits. Unfortunatelythey have no idea of the difficulties people can experience and basing his abilities on whathe writes (possibly laboriously) during the best moments of his day is tragic because therest of his day is not like that. I personally have enormous difficulty now with multitasking and also dealing with multiplevoices and/or sounds. A physical job is not possible because my arms and legs have nostamina. Working in an alternative desk job such as a phone center seems impossible tome because of the cognitive processing issues. If worse comes to worse I'll take one ofthose jobs and let them see for themselves just how bad those issues are. It seems critical we communicate to doctors and attorneys what kind of things we can nolonger do and why. I don't know if what I wrote will help you in that or not but at worst youmight know you're not alone. I still don't know if I have sarc or ms but my new neuro is moving fast. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 3 Apr 2010 18:39:08 +0000Subject: Problems with Memory/Communicatio n

Hello All:Not too long ago someone posted info regarding neurosarcoidosis and the inability to relate over the phone because of delayed brain processing: For example, I can no longer answer phones in the office because words don't come readily or I tend to forget what I'm saying or to whom I'm speaking. The information that was posted was instrumental to me in that it explained what I am experiencing. I have Arnaud Chiari malformation of the brain in addition to neurosarcoidosis.Also, I need to know what to tell my lawyers about my problems when I meet with him; therefore, I am requesting input on what to mention so that I leave nothing of importance out of the discussion. When it comes to talking with anyone, I can't seem to find the words I want to use. I forget the third word before I have spoken the fourth word. Please ... someone help me obtain the information I need as soon as possible, as my scheduled appointment is coming up this week!I am now back on Prednisone 5.0 mg because pain returned; but now with the Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep habit is out of whack: I often awaken several times during the wee hours of the night!! Although I am going through all of this, I still know that my God is in charge and that I am in His capable hands! To all of you, have a blessed Resurrection Sunday!!Always, (pronounced Kah'ren) L. -Maye (Baltimore MD)

[Guest guest]

Hi,

I'm having problems with my short term memory. If you were to ask me in five minutes about this email I might of forgotten that I ever sent it, but if you asked who my 4th grade teacher was I spit it right out. My doctors can't agree upon if the problem is from my N.S., my meds, age, or another condition. Its horrible not being able to remember especially at work, I don't dare to sign up for college courses anymore. If I were to look up a phone number I'd forget it before I got to the phone or get to the phone and forgot what I was there for. It's pretty darn scary.

Happy Easter!

Rick

Subject: RE: Problems with Memory/CommunicationTo: "neurosarcoidosis " <neurosarcoidosis >Date: Sunday, April 4, 2010, 1:25 AM

Hi Tracie, If someone asked me if I wanted coffee or tea I'd probably sit blankly for a moment, realizepeople were looking at me, and say,'Were you talking to me?'. That's not always what happens but I'm getting very used to people rolling their eyes. I share the sleep issues. For some reason when sleeping I always get really hot no matterwhat I do and heat makes me symptomatic. I wake up in a panic and can't get back to sleepuntil I've gotten up and cooled down for a few hours. And of course doing anything at allduring the day can tired me out to the point of needing a nap with no warning. SometimesI take a nap in the middle of an email. You make some great points. What we go thru daily reminds me of a joke often told by oneof my old friends: 'The doctor gave me medicine for my memory problems but I forgot to take

it.' Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sat, 3 Apr 2010 16:30:57 -0700Subject: Re: Problems with Memory/Communicatio n

Darrin, thank you so very much for sharing these addl ideas with . So much of what you said about multitasking and multiple voices and being able to discern what is being said when in a group situation-- are all the same issues for me.

I've even gotten to a place where I look at coughing and peeing at the same time-- (thank god for depends) as multi-tasking- and it sucks.

Much of the time, I'll put together an email for all of us, it looks great, but when I go back and reread it-- I'm amazed at how disjointed it seems. Add the exhaustion-- and I'm toast.

Like so many of us, my days and nights seem to have reversed themself, and I'll sleep all day, then be up until 2 or 3 in the morning. I know part of that is figuring that if I'm not in bed tossing and turning-- then at least my husband is getting some sleep.

This is a tough, and humbling disease-- and explaining that you feel like you have an early onset dementia is hard = at best. I've found that having a friend go with me, and explaining what they see is always a good idea. Not to mention that you can then have another body blocking the door so they have to answer your questions.

BTW, I've gone as far as telling my neuro that he has had me waiting for xx 3 1/2 hrs-- so he will not leave the room to take that call until I'm done. He didn't like it-- and I did ask him if someone's life was on the line, or if it was a general "consult" -- so that I knew I wasn't preventing someone from critical care.

We pay these docs-- even with insurance, and they are "employed" by us. We can fire them-- and their egos generally don't like this. So what...

Last tiame I was in-- he got impatient with me because I decided to talk to him in the way I explain stuff to all of us- basics-- and he figured he knew all that so didn't have to listen to me lecture him on medicine 101--- that was when I told him that if he'd explain it to me, I wouldn't have to spend all my time finding the answers to the questions he was too busy to answer. pissed him off with that also. so what....

My point-- I think I had one.. is that we need to share all the challenges. The topics of loss of concentration, multitasking, problem solving, sensory overload, exhaustion that would choke an elephant, sexual disfunction, anger, overcompensation, compulsiveness, inability to make decisions, not being able to answer simple questions--ie. do you want tea or coffee- can just totally set off the day- (I can handle "what would you like to drink-"- but can't handle the coffee tea question) so that is how life is for me.

Hope it helps, and I truly love that you all are helping each other with these issues-- it takes such a huge load off the moderators.

Sincerely,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Sat, April 3, 2010 1:04:09 PMSubject: RE: Problems with Memory/Communicatio n

Hello, On a good day, after rest and caffeine, and blessed with the luck of mental clarity andmemory for a time I can talk about a subject for an hour and sound reasonably competent. When it comes time to listen, type, or otherwise interface with the world outside my ownhead though things tend to fall apart. Describing this is difficult. Today I realized that whether it's walking, typing, hearing, seeing, or even thinking at times, it's as if the thingsI used to do automatically with one part of my brain I now need to do with my conscious mind, explaining the steps to myself one at a time. For things like listening I'm just notable to do that fast enough sometimes. I read about a man who had a blog page. On the basis of that page he was determined tohave good cognitive skills and was denied government benefits. Unfortunatelythey have no idea of the

difficulties people can experience and basing his abilities on whathe writes (possibly laboriously) during the best moments of his day is tragic because therest of his day is not like that. I personally have enormous difficulty now with multitasking and also dealing with multiplevoices and/or sounds. A physical job is not possible because my arms and legs have nostamina. Working in an alternative desk job such as a phone center seems impossible tome because of the cognitive processing issues. If worse comes to worse I'll take one ofthose jobs and let them see for themselves just how bad those issues are. It seems critical we communicate to doctors and attorneys what kind of things we can nolonger do and why. I don't know if what I wrote will help you in that or not but at worst youmight know you're not alone. I still don't know if I have sarc or ms but my new

neuro is moving fast. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 3 Apr 2010 18:39:08 +0000Subject: Problems with Memory/Communicatio n

Hello All:Not too long ago someone posted info regarding neurosarcoidosis and the inability to relate over the phone because of delayed brain processing: For example, I can no longer answer phones in the office because words don't come readily or I tend to forget what I'm saying or to whom I'm speaking. The information that was posted was instrumental to me in that it explained what I am experiencing. I have Arnaud Chiari malformation of the brain in addition to neurosarcoidosis.Also, I need to know what to tell my lawyers about my problems when I meet with him; therefore, I am requesting input on what to mention so that I leave nothing of importance out of the discussion. When it comes to talking with anyone, I can't seem to find the words I want to use. I forget the third word before I have spoken the fourth word. Please ... someone help me obtain the information I need as soon as possible, as my scheduled

appointment is coming up this week!I am now back on Prednisone 5.0 mg because pain returned; but now with the Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep habit is out of whack: I often awaken several times during the wee hours of the night!! Although I am going through all of this, I still know that my God is in charge and that I am in His capable hands! To all of you, have a blessed Resurrection Sunday!!Always, (pronounced Kah'ren) L. -Maye (Baltimore MD)

[Guest guest]

I have such problems concentrating when I'm having a conversation with someone

and then I forget what they say. My neuropsychologist said its because all this

information is being fed in which comes faster and faster and then you hit a

point when you can't process it.

I hate it because my family crack it with me when i forget what they said or

lose place. What's really annoying is that they are sympathetic to every other

symptom except for that one.

>

>

>

> Subject: RE: Problems with Memory/Communication

> To: " neurosarcoidosis " <neurosarcoidosis >

> Date: Sunday, April 4, 2010, 1:25 AM

>

>

>  

>

>

>

> Hi Tracie,

>  

> If someone asked me if I wanted coffee or tea I'd probably sit blankly for a

moment, realize

> people were looking at me, and say,'Were you talking to me?'.

>  

> That's not always what happens but I'm getting very used to people rolling

their eyes.

>  

> I share the sleep issues. For some reason when sleeping I always get really

hot no matter

> what I do and heat makes me symptomatic. I wake up in a panic and can't get

back to sleep

> until I've gotten up and cooled down for a few hours. And of course doing

anything at all

> during the day can tired me out to the point of needing a nap with no warning.

Sometimes

> I take a nap in the middle of an email.

>  

> You make some great points. What we go thru daily reminds me of a joke often

told by one

> of my old friends:

>  

> 'The doctor gave me medicine for my memory problems but I forgot to take it.'

>  

>  

> Cheers,

> Darrin

>

>

>  

>

>

> To: Neurosarcoidosis@ yahoogroups. com

> From: tiodaat2001@ yahoo.com

> Date: Sat, 3 Apr 2010 16:30:57 -0700

> Subject: Re: Problems with Memory/Communicatio n

>

>  

>

>

>

>

> Darrin, thank you so very much for sharing these addl ideas with .  So

much of what you said about multitasking and multiple voices and being able to

discern what is being said when in a group situation-- are all the same issues

for me. 

> I've even gotten to a place where I look at coughing and peeing at the same

time-- (thank god for depends) as multi-tasking- and it sucks. 

> Much of the time, I'll put together an email for all of us, it looks great,

but when I go back and reread it-- I'm amazed at how disjointed it seems.  Add

the exhaustion-- and I'm toast. 

> Like so many of us, my days and nights seem to have reversed themself, and

I'll sleep all day, then be up until 2 or 3 in the morning.  I know part of

that is figuring that if I'm not in bed tossing and turning-- then at least my

husband is getting some sleep. 

> This is a tough, and humbling disease-- and explaining that you feel like you

have an early onset dementia is hard = at best.  I've found that having a

friend go with me, and explaining what they see is always a good idea.  Not to

mention that you can then have another body blocking the door so they have to

answer your questions. 

> BTW, I've gone as far as telling my neuro that he has had me waiting for xx 3

1/2 hrs-- so he will not leave the room to take that call until I'm done.  He

didn't like it-- and I did ask him if someone's life was on the line, or if it

was a general " consult " -- so that I knew I wasn't preventing someone from

critical care. 

> We pay these docs-- even with insurance, and they are " employed " by us.  We

can fire them-- and their egos generally don't like this.  So what...

> Last tiame I was in-- he got impatient with me because I decided to talk to

him in the way I explain stuff to all of us- basics-- and he figured he knew all

that so didn't have to listen to me lecture him on medicine 101--- that was when

I told him that if he'd explain it to me, I wouldn't have to spend all my time

finding the answers to the questions he was too busy to answer.  pissed him off

with that also.  so what....

> My point-- I think I had one..   is that we need to share all the

challenges.  The topics of loss of concentration, multitasking, problem

solving, sensory overload, exhaustion that would choke an elephant, sexual

disfunction, anger, overcompensation, compulsiveness, inability to make

decisions, not being able to answer simple questions--ie. do you want tea or

coffee- can just totally set off the day- (I can handle " what would you like to

drink- " - but can't handle the coffee tea question) so that is how life is for

me. 

> Hope it helps, and I truly love that you all are helping each other with these

issues-- it takes such a huge load off the moderators. 

> Sincerely,

> Tracie

> NS Co-owner/moderator

>

>

>

>

>

>

> To: " neurosarcoidosis@ yahoogroups. com " <neurosarcoidosis@ yahoogroups. com>

> Sent: Sat, April 3, 2010 1:04:09 PM

> Subject: RE: Problems with Memory/Communicatio n

>

>  

>

> Hello,

>  

> On a good day, after rest and caffeine, and blessed with the luck of mental

clarity and

> memory for a time I can talk about a subject for an hour and sound reasonably

competent.

>  

> When it comes time to listen, type, or otherwise interface with the world

outside my own

> head though things tend to fall apart. Describing this is difficult. Today I

realized that

> whether it's walking, typing, hearing, seeing, or even thinking at times, it's

as if the things

> I used to do automatically with one part of my brain I now need to do with my

conscious

> mind, explaining the steps to myself one at a time. For things like listening

I'm just not

> able to do that fast enough sometimes.

>  

> I read about a man who had a blog page. On the basis of that page he

was determined to

> have good cognitive skills and was denied government benefits. Unfortunately

> they have no idea of the difficulties people can experience and basing his

abilities on what

> he writes (possibly laboriously) during the best moments of his day is tragic

because the

> rest of his day is not like that.

>  

> I personally have enormous difficulty now with multitasking and also dealing

with multiple

> voices and/or sounds. A physical job is not possible because my arms and legs

have no

> stamina. Working in an alternative desk job such as a phone center seems

impossible to

> me because of the cognitive processing issues. If worse comes to worse I'll

take one of

> those jobs and let them see for themselves just how bad those issues are.

>  

> It seems critical we communicate to doctors and attorneys what kind of things

we can no

> longer do and why. I don't know if what I wrote will help you in that or not

but at worst you

> might know you're not alone.

>  

> I still don't know if I have sarc or ms but my new neuro is moving fast.

>  

>  

> Cheers,

> Darrin

>

>

>

>  

>

>

> To: Neurosarcoidosis@ yahoogroups. com

> From: specialk2002ac@ yahoo.com

> Date: Sat, 3 Apr 2010 18:39:08 +0000

> Subject: Problems with Memory/Communicatio n

>

>  

>

>

> Hello All:

>

> Not too long ago someone posted info regarding neurosarcoidosis and the

inability to relate over the phone because of delayed brain processing: For

example, I can no longer answer phones in the office because words don't come

readily or I tend to forget what I'm saying or to whom I'm speaking. The

information that was posted was instrumental to me in that it explained what I

am experiencing. I have Arnaud Chiari malformation of the brain in addition to

neurosarcoidosis.

>

> Also, I need to know what to tell my lawyers about my problems when I meet

with him; therefore, I am requesting input on what to mention so that I leave

nothing of importance out of the discussion. When it comes to talking with

anyone, I can't seem to find the words I want to use. I forget the third word

before I have spoken the fourth word. Please ... someone help me obtain the

information I need as soon as possible, as my scheduled appointment is coming up

this week!

>

> I am now back on Prednisone 5.0 mg because pain returned; but now with the

Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep

habit is out of whack: I often awaken several times during the wee hours of the

night!! Although I am going through all of this, I still know that my God is in

charge and that I am in His capable hands! To all of you, have a blessed

Resurrection Sunday!!

>

> Always,

> (pronounced Kah'ren) L. -Maye (Baltimore MD)

>

[Guest guest]

Hi Rick,

Writing things down helps a lot but not if you forget the list!

Cheers,

Darrin

To: Neurosarcoidosis From: jack11973@...Date: Sun, 4 Apr 2010 05:09:48 -0700Subject: RE: Problems with Memory/Communication

Hi,

I'm having problems with my short term memory. If you were to ask me in five minutes about this email I might of forgotten that I ever sent it, but if you asked who my 4th grade teacher was I spit it right out. My doctors can't agree upon if the problem is from my N.S., my meds, age, or another condition. Its horrible not being able to remember especially at work, I don't dare to sign up for college courses anymore. If I were to look up a phone number I'd forget it before I got to the phone or get to the phone and forgot what I was there for. It's pretty darn scary.

Happy Easter!

Rick

Subject: RE: Problems with Memory/CommunicationTo: "neurosarcoidosis " <neurosarcoidosis >Date: Sunday, April 4, 2010, 1:25 AM

Hi Tracie, If someone asked me if I wanted coffee or tea I'd probably sit blankly for a moment, realizepeople were looking at me, and say,'Were you talking to me?'. That's not always what happens but I'm getting very used to people rolling their eyes. I share the sleep issues. For some reason when sleeping I always get really hot no matterwhat I do and heat makes me symptomatic. I wake up in a panic and can't get back to sleepuntil I've gotten up and cooled down for a few hours. And of course doing anything at allduring the day can tired me out to the point of needing a nap with no warning. SometimesI take a nap in the middle of an email. You make some great points. What we go thru daily reminds me of a joke often told by oneof my old friends: 'The doctor gave me medicine for my memory problems but I forgot to take it.' Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: tiodaat2001@ yahoo.comDate: Sat, 3 Apr 2010 16:30:57 -0700Subject: Re: Problems with Memory/Communicatio n

Darrin, thank you so very much for sharing these addl ideas with . So much of what you said about multitasking and multiple voices and being able to discern what is being said when in a group situation-- are all the same issues for me.

I've even gotten to a place where I look at coughing and peeing at the same time-- (thank god for depends) as multi-tasking- and it sucks.

Much of the time, I'll put together an email for all of us, it looks great, but when I go back and reread it-- I'm amazed at how disjointed it seems. Add the exhaustion-- and I'm toast.

Like so many of us, my days and nights seem to have reversed themself, and I'll sleep all day, then be up until 2 or 3 in the morning. I know part of that is figuring that if I'm not in bed tossing and turning-- then at least my husband is getting some sleep.

This is a tough, and humbling disease-- and explaining that you feel like you have an early onset dementia is hard = at best. I've found that having a friend go with me, and explaining what they see is always a good idea. Not to mention that you can then have another body blocking the door so they have to answer your questions.

BTW, I've gone as far as telling my neuro that he has had me waiting for xx 3 1/2 hrs-- so he will not leave the room to take that call until I'm done. He didn't like it-- and I did ask him if someone's life was on the line, or if it was a general "consult" -- so that I knew I wasn't preventing someone from critical care.

We pay these docs-- even with insurance, and they are "employed" by us. We can fire them-- and their egos generally don't like this. So what...

Last tiame I was in-- he got impatient with me because I decided to talk to him in the way I explain stuff to all of us- basics-- and he figured he knew all that so didn't have to listen to me lecture him on medicine 101--- that was when I told him that if he'd explain it to me, I wouldn't have to spend all my time finding the answers to the questions he was too busy to answer. pissed him off with that also. so what....

My point-- I think I had one.. is that we need to share all the challenges. The topics of loss of concentration, multitasking, problem solving, sensory overload, exhaustion that would choke an elephant, sexual disfunction, anger, overcompensation, compulsiveness, inability to make decisions, not being able to answer simple questions--ie. do you want tea or coffee- can just totally set off the day- (I can handle "what would you like to drink-"- but can't handle the coffee tea question) so that is how life is for me.

Hope it helps, and I truly love that you all are helping each other with these issues-- it takes such a huge load off the moderators.

Sincerely,

Tracie

NS Co-owner/moderator

To: "neurosarcoidosis@ yahoogroups. com" <neurosarcoidosis@ yahoogroups. com>Sent: Sat, April 3, 2010 1:04:09 PMSubject: RE: Problems with Memory/Communicatio n

Hello, On a good day, after rest and caffeine, and blessed with the luck of mental clarity andmemory for a time I can talk about a subject for an hour and sound reasonably competent. When it comes time to listen, type, or otherwise interface with the world outside my ownhead though things tend to fall apart. Describing this is difficult. Today I realized that whether it's walking, typing, hearing, seeing, or even thinking at times, it's as if the thingsI used to do automatically with one part of my brain I now need to do with my conscious mind, explaining the steps to myself one at a time. For things like listening I'm just notable to do that fast enough sometimes. I read about a man who had a blog page. On the basis of that page he was determined tohave good cognitive skills and was denied government benefits. Unfortunatelythey have no idea of the difficulties people can experience and basing his abilities on whathe writes (possibly laboriously) during the best moments of his day is tragic because therest of his day is not like that. I personally have enormous difficulty now with multitasking and also dealing with multiplevoices and/or sounds. A physical job is not possible because my arms and legs have nostamina. Working in an alternative desk job such as a phone center seems impossible tome because of the cognitive processing issues. If worse comes to worse I'll take one ofthose jobs and let them see for themselves just how bad those issues are. It seems critical we communicate to doctors and attorneys what kind of things we can nolonger do and why. I don't know if what I wrote will help you in that or not but at worst youmight know you're not alone. I still don't know if I have sarc or ms but my new neuro is moving fast. Cheers,Darrin

To: Neurosarcoidosis@ yahoogroups. comFrom: specialk2002ac@ yahoo.comDate: Sat, 3 Apr 2010 18:39:08 +0000Subject: Problems with Memory/Communicatio n

Hello All:Not too long ago someone posted info regarding neurosarcoidosis and the inability to relate over the phone because of delayed brain processing: For example, I can no longer answer phones in the office because words don't come readily or I tend to forget what I'm saying or to whom I'm speaking. The information that was posted was instrumental to me in that it explained what I am experiencing. I have Arnaud Chiari malformation of the brain in addition to neurosarcoidosis.Also, I need to know what to tell my lawyers about my problems when I meet with him; therefore, I am requesting input on what to mention so that I leave nothing of importance out of the discussion. When it comes to talking with anyone, I can't seem to find the words I want to use. I forget the third word before I have spoken the fourth word. Please ... someone help me obtain the information I need as soon as possible, as my scheduled appointment is coming up this week!I am now back on Prednisone 5.0 mg because pain returned; but now with the Prednisone I am experiencing weakness and lightheadedness again. Also, my sleep habit is out of whack: I often awaken several times during the wee hours of the night!! Although I am going through all of this, I still know that my God is in charge and that I am in His capable hands! To all of you, have a blessed Resurrection Sunday!!Always, (pronounced Kah'ren) L. -Maye (Baltimore MD)