RE: Re: New to the group and sarcoidsosis

October 24, 2007

My

family calls me on my cell phone and they say, “Mom do you know where you

are, and where you are going” I find myself lost on roads I know like the

back of my hand, so it’s a good thing they check on me. I don’t

think they totally understand either, and yes it is so very hard to explain,

they just know I’m sick, some days good, some bad? Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidp

Sent: Wednesday, October 24, 2007

6:02 PM

To: Neurosarcoidosis

Subject: Re:

New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from

medication. My

kids thought it was amusing when I thought I was on one road when

actually I was on another. They still don't understand why I have to

drive a new route many times before I can remember it. My older son

worries about my problems with words. He thinks it's Alzheimer's or

something. Don't know how to explain it to them.

October 24, 2007

My

family calls me on my cell phone and they say, “Mom do you know where you

are, and where you are going” I find myself lost on roads I know like the

back of my hand, so it’s a good thing they check on me. I don’t

think they totally understand either, and yes it is so very hard to explain,

they just know I’m sick, some days good, some bad? Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidp

Sent: Wednesday, October 24, 2007

6:02 PM

To: Neurosarcoidosis

Subject: Re:

New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from

medication. My

kids thought it was amusing when I thought I was on one road when

actually I was on another. They still don't understand why I have to

drive a new route many times before I can remember it. My older son

worries about my problems with words. He thinks it's Alzheimer's or

something. Don't know how to explain it to them.

October 25, 2007

Hi guys, I think Marla and I have talked about this before, but I have the same problem. I will be riding with my kids and not thinking about it, take the wrong turns from where we are supposed to be headed . They have to yell at me every time I start to head the wrong way. They just think I am their crazy mother. But I have also done this when I am alone, finding myself driving the wrong way that I am supposed to be headed in. So you aren't alone..... Debbie T. Co-ModeratorMarla Bramer wrote: My family calls me on my cell phone and they say, “Mom do you know where you are, and where you are going” I find myself lost on roads I know like the back of my hand, so it’s a good thing they check on me. I don’t think they totally understand either, and yes it is so very hard to explain, they just know I’m sick, some days good, some bad?

Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Wednesday, October 24, 2007 6:02 PMTo: Neurosarcoidosis Subject: Re: New to the group and sarcoidsosis I have also had these symptoms and assumed it was from medication. Mykids thought it was amusing when I thought I was on one road whenactually I was on another. They still don't understand why I have todrive a new route many times before I can remember it. My older sonworries about my problems with words. He thinks it's Alzheimer's orsomething. Don't know how to explain it to them. Debbie T.Co-Moderator __________________________________________________

October 25, 2007

Hi guys, I think Marla and I have talked about this before, but I have the same problem. I will be riding with my kids and not thinking about it, take the wrong turns from where we are supposed to be headed . They have to yell at me every time I start to head the wrong way. They just think I am their crazy mother. But I have also done this when I am alone, finding myself driving the wrong way that I am supposed to be headed in. So you aren't alone..... Debbie T. Co-ModeratorMarla Bramer wrote: My family calls me on my cell phone and they say, “Mom do you know where you are, and where you are going” I find myself lost on roads I know like the back of my hand, so it’s a good thing they check on me. I don’t think they totally understand either, and yes it is so very hard to explain, they just know I’m sick, some days good, some bad?

Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Wednesday, October 24, 2007 6:02 PMTo: Neurosarcoidosis Subject: Re: New to the group and sarcoidsosis I have also had these symptoms and assumed it was from medication. Mykids thought it was amusing when I thought I was on one road whenactually I was on another. They still don't understand why I have todrive a new route many times before I can remember it. My older sonworries about my problems with words. He thinks it's Alzheimer's orsomething. Don't know how to explain it to them. Debbie T.Co-Moderator __________________________________________________

October 25, 2007

When I first got sick, I'd get in the car to go to the grocery store and it being only two blocks away, I'd forget where I was going and would be out of town before my son would finally ask, "where we going" that would snap me back usually.. I'd remember, and sometimes I'd just not know. he'd have to tell me.. With treatment that has gotten better, I've been on Imuran now for about 5 years.. that's not saying I can remember everything but I do believe its better..Having a teenager now, he says he tells me stuff that I just don't remember.. we've started writing him a calendar.. which helps me keep tabs on him..still he has to call and just remind me..Last year, he said he told me he was going to a 3 day basketball camp.. hmmm all I know is he went to play basketball and I expected him home by 8pm.. didn't happen.. I was hurt, mad, crying hysterically, threatened to have him brought back home.. etc everything you can mention..Now, the coach sends me a notice.. I go to church with them, and they know I sometimes might forget stuff.. Anyway, I'm rambling..Sorry.. lol

RE: Re: New to the group and sarcoidsosis

Hi guys, I think Marla and I have talked about this before, but I have the same problem. I will be riding with my kids and not thinking about it, take the wrong turns from where we are supposed to be headed . They have to yell at me every time I start to head the wrong way. They just think I am their crazy mother. But I have also done this when I am alone, finding myself driving the wrong way that I am supposed to be headed in. So you aren't alone..... Debbie T. Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

My family calls me on my cell phone and they say, “Mom do you know where you are, and where you are going” I find myself lost on roads I know like the back of my hand, so it’s a good thing they check on me. I don’t think they totally understand either, and yes it is so very hard to explain, they just know I’m sick, some days good, some bad? Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Wednesday, October 24, 2007 6:02 PMTo: Neurosarcoidosis Subject: Re: New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from medication. Mykids thought it was amusing when I thought I was on one road whenactually I ws on another. They still don't understand why I have todrive a new route many times before I can remember it. My older sonworries about my problems with words. He thinks it's Alzheimer's orsomething. Don't know how to explain it to them.

Debbie T.

Co-Moderator

__________________________________________________

October 25, 2007

When I first got sick, I'd get in the car to go to the grocery store and it being only two blocks away, I'd forget where I was going and would be out of town before my son would finally ask, "where we going" that would snap me back usually.. I'd remember, and sometimes I'd just not know. he'd have to tell me.. With treatment that has gotten better, I've been on Imuran now for about 5 years.. that's not saying I can remember everything but I do believe its better..Having a teenager now, he says he tells me stuff that I just don't remember.. we've started writing him a calendar.. which helps me keep tabs on him..still he has to call and just remind me..Last year, he said he told me he was going to a 3 day basketball camp.. hmmm all I know is he went to play basketball and I expected him home by 8pm.. didn't happen.. I was hurt, mad, crying hysterically, threatened to have him brought back home.. etc everything you can mention..Now, the coach sends me a notice.. I go to church with them, and they know I sometimes might forget stuff.. Anyway, I'm rambling..Sorry.. lol

RE: Re: New to the group and sarcoidsosis

Hi guys, I think Marla and I have talked about this before, but I have the same problem. I will be riding with my kids and not thinking about it, take the wrong turns from where we are supposed to be headed . They have to yell at me every time I start to head the wrong way. They just think I am their crazy mother. But I have also done this when I am alone, finding myself driving the wrong way that I am supposed to be headed in. So you aren't alone..... Debbie T. Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

My family calls me on my cell phone and they say, “Mom do you know where you are, and where you are going” I find myself lost on roads I know like the back of my hand, so it’s a good thing they check on me. I don’t think they totally understand either, and yes it is so very hard to explain, they just know I’m sick, some days good, some bad? Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Wednesday, October 24, 2007 6:02 PMTo: Neurosarcoidosis Subject: Re: New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from medication. Mykids thought it was amusing when I thought I was on one road whenactually I ws on another. They still don't understand why I have todrive a new route many times before I can remember it. My older sonworries about my problems with words. He thinks it's Alzheimer's orsomething. Don't know how to explain it to them.

Debbie T.

Co-Moderator

__________________________________________________

October 25, 2007

It can be really hard on your kids or others. I get kind of irritated when they start telling me, blocks or miles ahead, "Grandma, you need to turn right up ahead," or something similar, and I already know that. But I have to remember that THEY don't know that I know, and they have been with me when I've gone the wrong way, been late for an appointment, etc. I've explained to the older ones that I know they are trying to help, understandably, but I'd like them to wait until we are nearly to the turn or whatever; then if it looks like I'm not going to go the right way (I'm in the wrong lane, etc.) to say something. I also try to remember to think out loud, like saying, "We need to turn right at this light, don't we?" That way they know that I remember and they can relax. It works out pretty well for all of us. With the younger ones, I just let them backseat drive, because it's too hard for them to get this.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: rozebudz36@...Date: Thu, 25 Oct 2007 05:25:21 -0700Subject: RE: Re: New to the group and sarcoidsosis

Hi guys, I think Marla and I have talked about this before, but I have the same problem. I will be riding with my kids and not thinking about it, take the wrong turns from where we are supposed to be headed . They have to yell at me every time I start to head the wrong way. They just think I am their crazy mother. But I have also done this when I am alone, finding myself driving the wrong way that I am supposed to be headed in. So you aren't alone..... Debbie T. Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

My family calls me on my cell phone and they say, “Mom do you know where you are, and where you are going” I find myself lost on roads I know like the back of my hand, so it’s a good thing they check on me. I don’t think they totally understand either, and yes it is so very hard to explain, they just know I’m sick, some days good, some bad? Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Wednesday, October 24, 2007 6:02 PMTo: Neurosarcoidosis Subject: Re: New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from medication. Mykids thought it was amusing when I thought I was on one road whenactually I was on another. They still don't understand why I have todrive a new route many times before I can remember it. My older sonworries about my problems with words. He thinks it's Alzheimer's orsomething. Don't know how to explain it to them.

Debbie T.

Co-Moderator

__________________________________________________

October 25, 2007

It can be really hard on your kids or others. I get kind of irritated when they start telling me, blocks or miles ahead, "Grandma, you need to turn right up ahead," or something similar, and I already know that. But I have to remember that THEY don't know that I know, and they have been with me when I've gone the wrong way, been late for an appointment, etc. I've explained to the older ones that I know they are trying to help, understandably, but I'd like them to wait until we are nearly to the turn or whatever; then if it looks like I'm not going to go the right way (I'm in the wrong lane, etc.) to say something. I also try to remember to think out loud, like saying, "We need to turn right at this light, don't we?" That way they know that I remember and they can relax. It works out pretty well for all of us. With the younger ones, I just let them backseat drive, because it's too hard for them to get this.

Ramblin' RoseModerator A merry heart is good medicine. Proverbs 17:22

"How far you go in life depends on your being tender with the young, compassionate with the aged, sympathetic with the striving, and tolerant of the weak and the strong. Because someday in life you will have been all of these."

~ Washington Carver

To: Neurosarcoidosis From: rozebudz36@...Date: Thu, 25 Oct 2007 05:25:21 -0700Subject: RE: Re: New to the group and sarcoidsosis

Hi guys, I think Marla and I have talked about this before, but I have the same problem. I will be riding with my kids and not thinking about it, take the wrong turns from where we are supposed to be headed . They have to yell at me every time I start to head the wrong way. They just think I am their crazy mother. But I have also done this when I am alone, finding myself driving the wrong way that I am supposed to be headed in. So you aren't alone..... Debbie T. Co-ModeratorMarla Bramer <mebramer (AT) gmail (DOT) com> wrote:

My family calls me on my cell phone and they say, “Mom do you know where you are, and where you are going” I find myself lost on roads I know like the back of my hand, so it’s a good thing they check on me. I don’t think they totally understand either, and yes it is so very hard to explain, they just know I’m sick, some days good, some bad? Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of wendy_cidpSent: Wednesday, October 24, 2007 6:02 PMTo: Neurosarcoidosis Subject: Re: New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from medication. Mykids thought it was amusing when I thought I was on one road whenactually I was on another. They still don't understand why I have todrive a new route many times before I can remember it. My older sonworries about my problems with words. He thinks it's Alzheimer's orsomething. Don't know how to explain it to them.

Debbie T.

Co-Moderator

__________________________________________________

October 28, 2007

I’m

happy to hear that it gets better with the right medication, I am hoping

everything gets better, but still waiting on test results before we send the

appeal paper work in, will probably be later this week. So just taking it one

day at a time. Marla

From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of topdat@...

Sent: Thursday, October 25, 2007

5:49 AM

To: Neurosarcoidosis

Subject: Re:

Re: New to the group and sarcoidsosis

When I first got sick, I'd get in the car to go to the

grocery store and it being only two blocks away, I'd forget where I was going

and would be out of town before my son would finally ask, " where we

going " that would snap me back usually.. I'd remember, and sometimes I'd

just not know. he'd have to tell me.. With treatment that has gotten better,

I've been on Imuran now for about 5 years.. that's not saying I can remember

everything but I do believe its better..Having a teenager now, he says he tells

me stuff that I just don't remember.. we've started writing him a calendar..

which helps me keep tabs on him..still he has to call and just remind me..Last

year, he said he told me he was going to a 3 day basketball camp.. hmmm all I

know is he went to play basketball and I expected him home by 8pm.. didn't

happen.. I was hurt, mad, crying hysterically, threatened to have him brought

back home.. etc everything you can mention..Now, the coach sends me a notice..

I go to church with them, and they know I sometimes might forget stuff..

Anyway, I'm rambling..Sorry.. lol

Re:

New to the group and sarcoidsosis

I have also had these symptoms and assumed it was from medication. My

kids thought it was amusing when I thought I was on one road when

actually I ws on another. They still don't understand why I have to

drive a new route many times before I can remember it. My older son

worries about my problems with words. He thinks it's Alzheimer's or

something. Don't know how to explain it to them.

Debbie T.

Co-Moderator

__________________________________________________

October 28, 2007