Re: So Frustrated and scared.

[Guest guest]

Hi , I have to say that I am totally blown away! I know that your brother, and maybe even the rest of your family probably wouldn't understand....but if I was in your shoes I would find out whom I needed to contact to get him off of the road. My mom has NS, along with a lot of other stuff, but there is no way that she would do that even if she could.

If your brother doesn't care enough about himself to stay off the road, then someone has to care enough to keep him off. Perhaps you could contact Seattle DOT? I'm sure they wouldn't want him on the road any more than you do.

I'll be praying that things go well for you. Please keep us updated.

DuggerHave a blessed day!

-----Original Message-----From: Neurosarcoidosis [mailto:Neurosarcoidosis ]On Behalf Of Sent: Monday, June 26, 2006 8:21 AMTo: Neurosarcoidosis Subject: So Frustrated and scared.

Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that, I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay my story so you could take it into account when it comes to him and driving. This group would be wonderful for him to get the support and the

information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and

trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told

my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his

wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

I had one car accident. I tried to blame it on the other person whom an eye witness said was speeding. But I know that I didn't see him coming and I know that my reflexes are not what they should be. ( well in some areas I don't have any) Seriously too, I will fall asleep sitting at the traffic light. I don't drive anymore unless I have to and then it is for very short distances here in town. I think it is harder for men to give driving up than for most women and especially if he is younger. You must impress on him the safety of others. He probably doesn't care about his own right now. Someone may have to take his license and or car. Love is tough sometimes. He might like the group, especially the guys, maybe he can relate to them. Send him an email from us. Barb J.Debbie wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that, I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay my story so you could take it into account when it comes

to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi

Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even

hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really

no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

I had one car accident. I tried to blame it on the other person whom an eye witness said was speeding. But I know that I didn't see him coming and I know that my reflexes are not what they should be. ( well in some areas I don't have any) Seriously too, I will fall asleep sitting at the traffic light. I don't drive anymore unless I have to and then it is for very short distances here in town. I think it is harder for men to give driving up than for most women and especially if he is younger. You must impress on him the safety of others. He probably doesn't care about his own right now. Someone may have to take his license and or car. Love is tough sometimes. He might like the group, especially the guys, maybe he can relate to them. Send him an email from us. Barb J.Debbie wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that, I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay my story so you could take it into account when it comes

to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi

Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even

hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really

no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

I had one car accident. I tried to blame it on the other person whom an eye witness said was speeding. But I know that I didn't see him coming and I know that my reflexes are not what they should be. ( well in some areas I don't have any) Seriously too, I will fall asleep sitting at the traffic light. I don't drive anymore unless I have to and then it is for very short distances here in town. I think it is harder for men to give driving up than for most women and especially if he is younger. You must impress on him the safety of others. He probably doesn't care about his own right now. Someone may have to take his license and or car. Love is tough sometimes. He might like the group, especially the guys, maybe he can relate to them. Send him an email from us. Barb J.Debbie wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that, I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay my story so you could take it into account when it comes

to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi

Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even

hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really

no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

Dear Debbie, I thank you for responding..I was so frustrated and scared when I heard about this..and really I vent and talk to my friends..but honestly I know they don't understand but I know they are there for me...and like many people know nothing about neurosarcoidosis and I for one was no different and still I don't really uderstand.. My mom is very upset and all I could say is that he is a grown man and makes his own choices and she is there for him and to give him support and her opionion..My mom says he isn't ready to give up his life as he knew..and I told her that maybe the life he knew is not the same but he doesn't have to give up his life..I know from reading on board..that some here do volunteer work and work....but I just don't understand why he'd go into driving a huge truck like that...to risk his own life and really others on the road..and I'm so confused and I don't know how he'd even get a truckers

liscense..I don't know...I'm sorry that you had similiar situations and can only imagine how terribly scarey it would be..I hope it is a one time situation with my brother..but highly doubt it...I know my brother isn't responding well to the meds he's on...and was told that his last scan appears worse.. I'm sorry to bother on this board...but turned to you all...cause I know you'd understand.. I will send your post Debbie to my mother and I pray that this will give my brother the strength to join your group..I know it would be so good for him...and I will also with my mother..but I doubt she will..she was recently diagnosed with COPD and Emphasema and is on oxygen 85 percent of the day..and so her life change is taking alot of adjustment and she needs the support herself for that also... Thanks so much, Hugs, Debbie wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that,

I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay my story so you could take it into account when it comes to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your

brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt

since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into

cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

Dear Debbie, I thank you for responding..I was so frustrated and scared when I heard about this..and really I vent and talk to my friends..but honestly I know they don't understand but I know they are there for me...and like many people know nothing about neurosarcoidosis and I for one was no different and still I don't really uderstand.. My mom is very upset and all I could say is that he is a grown man and makes his own choices and she is there for him and to give him support and her opionion..My mom says he isn't ready to give up his life as he knew..and I told her that maybe the life he knew is not the same but he doesn't have to give up his life..I know from reading on board..that some here do volunteer work and work....but I just don't understand why he'd go into driving a huge truck like that...to risk his own life and really others on the road..and I'm so confused and I don't know how he'd even get a truckers

liscense..I don't know...I'm sorry that you had similiar situations and can only imagine how terribly scarey it would be..I hope it is a one time situation with my brother..but highly doubt it...I know my brother isn't responding well to the meds he's on...and was told that his last scan appears worse.. I'm sorry to bother on this board...but turned to you all...cause I know you'd understand.. I will send your post Debbie to my mother and I pray that this will give my brother the strength to join your group..I know it would be so good for him...and I will also with my mother..but I doubt she will..she was recently diagnosed with COPD and Emphasema and is on oxygen 85 percent of the day..and so her life change is taking alot of adjustment and she needs the support herself for that also... Thanks so much, Hugs, Debbie wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that,

I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay my story so you could take it into account when it comes to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your

brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt

since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into

cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,

[Guest guest]

Hi Debbie- i just read your post and if u want i

would be glad to contact your brother and at least let

him know i am available for helo if he would like me

to -it sounds like he is having a hard time and i dont

mind talking to him to let him know what is available

in Seattle let me know if u think this will help

MATT

--- Debbie rozebudz36@...> wrote:

> Dear ,

> I am sorry to say that I have had 3 car

> accidents since I have been ill. I have simply

> blacked out at the wheel. The first one was before

> I was on meds so I couldn't blame on the medication.

> The other two who knows. I was on meds at the

> time. I have been lucky in that I have been alone

> all 3 times and have not been seriously hurt. God

> has been looking over me in that respect. One time

> I hit a telephone pole and it came right near the

> passenger side beside me. Close call. After that,

> I wasn't allowed to drive for a period of time. Now

> I can only go short distances.

> Thank God it all worked out for your brother,

> Jim. I just wanted to relay my story so you could

> take it into account when it comes to him and

> driving. This group would be wonderful for him to

> get the support and the information he needs to

> hear. We are all very down to earth and comfortable

> easy going people that he could relax with and ask

> questions and get answers. But I know how stubborn

> people can be sometimes especially when it comes to

> their health. It sounds like he is in a state of

> denial right now. We have all felt that at one time

> or another.

> We are glad to have you here and hope your

> mother joins on as well to give support for this

> illness. We are here to answer questions and give

> out information, as much as you need. I hope your

> brother gets the medical attention that he needs .

> Hugs, Debbie

>

> emersyn_mom@...> wrote: Hi Everyone,

>

> I haven't posted anything since I joined this group

> but have been

> reading alot and trying to eduacate myself....I

> joined this board

> due to my brother having neurosarcoid...My brother

> lives in Seattle

> now and his wife is a physicians assistant..well my

> mother calls me

> late last night to inform me that my brother is

> driving a truck! I

> couldn't believe this..this is a long story my

> brother and I aren't

> close and won't get into it all cause sure no one

> really wants to

> hear..but either way I do love my brother and care

> very much for

> what is going on with him...I talk to my mother

> daily and she knows

> how things are..I've sent my mom this site to

> hopefully get my

> brother to join and also to email Matt since I know

> you also live

> in Seattle...but I know my brother and doesn't and

> won't try to get

> help and support from others who understand what he

> is going

> through..but back to my story..

> I was shocked to even hear number one my brother

> working..cause when

> he was diagnosed and almost died....the doctor told

> my brother once

> he's up and able to to go down to SSI and

> apply...cause he prob

> wouldn't be able to work with this disease...I do

> know my brother

> has it throughout his body and not just lungs...he

> used to be a

> finance manager at a car dealership..well he had to

> quit cause he'd

> be working a deal and then he'd forget what he was

> doing...and

> wouldn't be able to finish or close a deal.... so I

> guess he felt

> only thing he could do was drive a 18 wheeler..??i'm

> shocked and in

> disbelief by all this....well it gets worse....he

> was driving and

> had horrible headache and pulled over in a truck

> stop and crawled

> back into cab to sleep and when he woke up....he

> couldn't remember

> who he was/where he was/nothing......he got out of

> truck looked at

> it..still no recall,pulled out his drivers liscense

> and knew who at

> that point..but really no recall on that, then got

> his cell phone

> and called the last number he dialed which was his

> wife...she wasn't

> available so he left message...when she tried to

> call back...i guess

> my brothers phone was dead..so she called the police

> and not sure on

> time frame of all this..but as he was at truck stop

> a policeman

> pulled up and asked if he was Jim and he said yes

> and police

> said..your wife has filed a missing

> person....firstly..I'm worried

> and upset by all this.. I mean I don't even

> understand how he'd even

> get a liscense to drive a truck..I don't understand

> any of this..

> Thanks for listening.

> Hugs,

>

>

>

>

>

>

>

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[Guest guest]

, I'm sorry things are so scary right now. I would be scared too if it was my brother. How did he get the license.....they probably just did a preliminary exam, asked him a few questions, and since they probably didn't ask him directly did he have sarcoid they gave him the license. Alot of our test can come back normal, even when out body is not normal. Can your mom talk to him about rethinking the truck thing. I am also a "worker" and my family has a fit sometimes because I won't quit working, but I don't feel like it is time yet. However my work situation is alot different than truckdriving. I'll be praying for you both, take care...stress is not kind to healthy people either. Connie wrote: Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she

knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all

this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of

this..Thanks for listening.Hugs,

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[Guest guest]

Dear , I hope you have learned a lot about neurosarcoidosis by sharing with the group. You can now truly understand what your brother is going through. Does he have good doctors? Have they tried different medications? I don't know closely you follow his medical charts and all. But there are a lot of new and different combinations of medications out there. (You said his current meds were failing him and his tests were saying he was looking worse.) Sometimes as you have noticed on this list, we have had to change doctors and specialists because of inadequancy (sp?) . I myself have gone to 12 drs in 3 years before finding the right ones to help me. I have a neurologist, rheumotologist, a phsycologist and a PCP. It took a lot of medications and switching them around before I was put on maintenance drugs. I also know

what he is going through losing his job and all. I went through the same thing. Working for 20+ years , and 17 of them for the same company , is was so hard to leave my job. It was like my self identity was being pulled away from me. My job was everything to me and I still miss it to this day. (It's been 3 years since I have been gone.) It's very hard to admit you can't handle your position anymore. But its even harder to admit that you physically or mentally can't handle it either. Again, I am glad you found us. Good luck in having your mother and brother joining us as well. We will be here. Hugs, Debbie wrote: Dear Debbie, I thank you for responding..I was so frustrated and scared when I heard about this..and really I vent and talk to my friends..but honestly I know they don't understand but I know they are there for me...and like many people know nothing about neurosarcoidosis and I for one was no different and still I don't really uderstand.. My mom is very upset and all I could say is that he is a grown man and makes his own choices and she is there for him and to give him support and her opionion..My mom says he isn't ready to give up his life as he knew..and I told her that maybe the life he knew is not the same but he doesn't have to give up his life..I know from reading on board..that some here do volunteer work and work....but I just don't understand why he'd go into driving a huge truck like that...to risk his own life and really others on the road..and I'm so confused and I don't know how

he'd even get a truckers liscense..I don't know...I'm sorry that you had similiar situations and can only imagine how terribly scarey it would be..I hope it is a one time situation with my brother..but highly doubt it...I know my brother isn't responding well to the meds he's on...and was told that his last scan appears worse.. I'm sorry to bother on this board...but turned to you all...cause I know you'd understand.. I will send your post Debbie to my mother and I pray that this will give my brother the strength to join your group..I know it would be so good for him...and I will also with my mother..but I doubt she will..she was recently diagnosed with COPD and Emphasema and is on oxygen 85 percent of the day..and so her life change is taking alot of adjustment and she needs the support herself for that also... Thanks so much, Hugs, Debbie

wrote: Dear , I am sorry to say that I have had 3 car accidents since I have been ill. I have simply blacked out at the wheel. The first one was before I was on meds so I couldn't blame on the medication. The other two who knows. I was on meds at the time. I have been lucky in that I have been alone all 3 times and have not been seriously hurt. God has been looking over me in that respect. One time I hit a telephone pole and it came right near the passenger side beside me. Close call. After that, I wasn't allowed to drive for a period of time. Now I can only go short distances. Thank God it all worked out for your brother, Jim. I just wanted to relay

my story so you could take it into account when it comes to him and driving. This group would be wonderful for him to get the support and the information he needs to hear. We are all very down to earth and comfortable easy going people that he could relax with and ask questions and get answers. But I know how stubborn people can be sometimes especially when it comes to their health. It sounds like he is in a state of denial right now. We have all felt that at one time or another. We are glad to have you here and hope your mother joins on as well to give support for this illness. We are here to answer questions and give out information, as much as you need. I hope your brother gets the medical attention that he needs . Hugs, Debbie wrote: Hi Everyone, I haven't posted anything since I joined this group but have been reading alot and trying to eduacate myself....I joined this board due to my brother having neurosarcoid...My brother lives in Seattle now and his wife is a physicians assistant..well my mother calls me late last night to inform me that my brother is driving a truck! I couldn't believe this..this is a long story my brother and I aren't close and won't get into it all cause sure no one really wants to hear..but either way I do love my brother and care very much for what is going on with him...I talk to my mother daily and she knows how things are..I've sent my mom this site to hopefully get my brother to join and also to email Matt since I know you also live in Seattle...but I know my brother and doesn't and won't try to get help and support from others who understand what he is going through..but back to my

story..I was shocked to even hear number one my brother working..cause when he was diagnosed and almost died....the doctor told my brother once he's up and able to to go down to SSI and apply...cause he prob wouldn't be able to work with this disease...I do know my brother has it throughout his body and not just lungs...he used to be a finance manager at a car dealership..well he had to quit cause he'd be working a deal and then he'd forget what he was doing...and wouldn't be able to finish or close a deal.... so I guess he felt only thing he could do was drive a 18 wheeler..??i'm shocked and in disbelief by all this....well it gets worse....he was driving and had horrible headache and pulled over in a truck stop and crawled back into cab to sleep and when he woke up....he couldn't remember who he was/where he was/nothing......he got out of truck looked at it..still no recall,pulled out his drivers liscense and knew

who at that point..but really no recall on that, then got his cell phone and called the last number he dialed which was his wife...she wasn't available so he left message...when she tried to call back...i guess my brothers phone was dead..so she called the police and not sure on time frame of all this..but as he was at truck stop a policeman pulled up and asked if he was Jim and he said yes and police said..your wife has filed a missing person....firstly..I'm worried and upset by all this.. I mean I don't even understand how he'd even get a liscense to drive a truck..I don't understand any of this..Thanks for listening.Hugs,