Re: Resources for caregivers

[Guest guest]

Green Bay all the way!To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for

caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me considerably with my chronic back

pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with chronic pain or illness. These are all

interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems, weight change (more or less), fatigue,

loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I acknowledge any old habits

that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!)

> To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified.

(I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Yea! Green Bay...all the way! ...lolLife may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me

considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with chronic pain

or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems, weight change

(more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I acknowledge any

old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with

his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the

disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database >

>

[Guest guest]

J-E-T-S JETS JETS JETS!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

My husband has sarc and he has an appointment on Monday with a Neurologist

>

> Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.

> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo

>

>

>

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

The Green Bay victory was fantastic! It was the most exercise I had so far this year...from screaming and yelling....lol! They were the cat's pajamas!Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me

considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with

chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems,

weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I

acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it

to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

All I can say is my poor Eagles. Not sure who i shall root for now. Matt

Subject: Re: Resources for caregivers

To: Neurosarcoidosis

Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis

Sent: Fri, January 14, 2011 12:42:25 AM

Subject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:

The National Family Caregivers Assn. http://www.nfcacares.org/.

The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtml

I was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.

by Grady, Ph.D.

“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€

The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.

Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with chronic pain or illness. These are all interconnected.

Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.

Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.

Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems, weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.

Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.

The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.

2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.

3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.

4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.

5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.

6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.

7. RECOGNIZING HABITS: I acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.

8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.

9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life

10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.

last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' Rose

Moderator

COLTS ROCK! (Jets pffbbtt!)

> To: Neurosarcoidosis

> From: jodiug@...

> Date: Wed, 12 Jan 2011 16:34:24 +0000

> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist

>

> Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to

about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.

> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo

>

>

>

>

> ------------------------------------

>

> ~~~~ *** ~~~ *** ~~~ *** ~~~~

> The Neurosarcoidosis Community

>

>

>

> Message Archives:-

> http://groups.yahoo.com/group/Neurosarcoidosis/messages

>

> Members Database:-

> Listings of locations, phone numbers, and instant messengers.

> http://groups.yahoo.com/group/Neurosarcoidosis/database

>

>

[Guest guest]

Packers are a sure bet.....lol.Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me

considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing

people with chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve

sleep problems, weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING

HABITS: I acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10

years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a

blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Ah yes, the Pack is BackTo: Neurosarcoidosis Sent: Sun, January 16, 2011 12:15:48 PMSubject: Re: Resources for caregivers

The Green Bay victory was fantastic! It was the most exercise I had so far this year...from screaming and yelling....lol! They were the cat's pajamas!Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me

considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with

chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems,

weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I

acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011

16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it

to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

Although I am from Philly, I am a die hard Steelers fan. You could always root for them. LOL

To: Neurosarcoidosis Sent: Sun, January 16, 2011 8:07:22 PMSubject: Re: Resources for caregivers

All I can say is my poor Eagles. Not sure who i shall root for now. Matt

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with

chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems,

weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I

acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10

years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a

blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

I said the same thing when I was cheering for the Steelers. Hope to see Green Bay in the superbowl playing the Steele Curtain

To: Neurosarcoidosis Sent: Sun, January 16, 2011 1:15:48 PMSubject: Re: Resources for caregivers

The Green Bay victory was fantastic! It was the most exercise I had so far this year...from screaming and yelling....lol! They were the cat's pajamas!Life may not always be the party we hoped for, but while we're here we might as well dance!

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues facing people with

chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems,

weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING HABITS: I

acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject:

My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts. My husband was diagnosed 10 years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I

went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.>

http://groups.yahoo.com/group/Neurosarcoidosis/database > >

[Guest guest]

I may just have to do that. ThanksMatt

Subject: Re: Resources for caregiversTo: Neurosarcoidosis Date: Friday, January 14, 2011, 7:02 PM

Green Bay all the way!

To: neurosarcoidosis Sent: Fri, January 14, 2011 12:42:25 AMSubject: Resources for caregivers

Jo, don't be afraid to ask any questions or express any emotions here. For some, this is the only place they feel they can let go. Chronic illness takes a toll on the loved ones & caregivers also. There are some excellent online resources for caregivers:The National Family Caregivers Assn. http://www.nfcacares.org/. The U.S. govt. caregivers site http://www.usa.gov/Citizen/Topics/Health/caregivers.shtmlI was going to post one of our links on 10 resolutions for people with chronic pain/illness, but the website is gone. However, I did find the original 10 resolutions on the writer's blog, which is a very interesting site in itself. He is a psychologist focusing on mindfulness, which has helped me considerably with my chronic back pain. Anyway, here is the post about the 10 resolutions, along with his link:

10 Resolutions for managing chronic pain or illness

LIVING WITH CHRONIC CONDITIONS: Beyond Survival.by Grady, Ph.D.“There is nothing more we can do; you will just have to learn to live with itâ€. This is the message heard by many people suffering a chronic condition – chronic illness or pain. Medical treatment has not fully resolved the problem. The patient’s question remains: “But HOW do I live with this?â€The answers are not easy, but they exist. As people learn to adjust to a new life, priorities often change, and some old attitudes and habits will shift. Meanwhile, learning a set of well-understood coping strategies makes a chronic condition manageable. Life can be rewarding again.Recognizing the various problems that come with a chronic diagnosis is a start for the patient and their caregivers. While some of this depends on the condition, there are common emotional, behavioural, social, physical issues

facing people with

chronic pain or illness. These are all interconnected.Mood changes, such as depression, anxiety, or anger result from disappointed hopes for a cure, difficulties with medical systems or insurance, loss of ability to do valued activities in work, sports, hobbies, or family life. Some people go through a stage of grieving the person they were and the life they had. Behaviour and social changes that go with this might be withdrawing socially and becoming less active.Some people become more dependent; others insist on trying to do things the way they used to, regardless. It can be tough on everyone, and families usually feel some stress. A spouse may have to take on much more of the family’s responsibilites and chores, while also providing practical and emotional support for an ill partner. Marital strain may result.Physical changes result from the condition, and also from the changes in behaviour and mood. These often involve sleep problems,

weight change (more or less), fatigue, loss of strength, flexibility and endurance. Medication side-effects also play a role in physical changes.Clearly, learning to “live with it†involves much more than just managing symptoms. The condition is a rock dropped in a pool of water. Ripples wash across the pond, and nothing remains the same.The person who is ready to learn to “live with it†will be helped by making positive decisions about themselves, their life, and their relationship with the condition. Here are some suggestions – ten resolutions – that can help people learning to cope with their changed lives. Those who make these resolutions their own stand a good chance of thriving, not just surviving.

10 Resolutions for people managing chronic pain or illness:

1. RECOGNITION: I realize that my condition has not been completely cured or resolved by medical treatment, or the force of my will, by waiting, other sources of help, or by deciding it’s not important. I am prepared to recognize this and move in a new direction.2. POSITIVE APPROACH: I recognize that I need a positive relationship with my body and symptoms. I am learning positive ways to live with this condition.3. LETTING GO: I let go of parts of my past life that are over. I may grieve what is lost, but I am committed to living well with what is.4. SELF-ACCEPTANCE: I accept myself and forgive myself for having had difficulties. I recognize that I am human, and have human limitations like everyone.5. BUILDING RELATIONSHIPS: I build or heal my relationships with others.6. NO BLAME: I forgive anyone I have blamed for my condition or for mistreatment.7. RECOGNIZING

HABITS: I

acknowledge any old habits that do not serve me or my condition, and am willing to develop new, healthier ones.8. ACKNOWLEDGING RESISTANCE: I acknowledge ways I am held back – by myself, by others, by fear, or by reinforcement for staying where I am.9. INDEPENDENCE: I understand how I can become dependent in unhealthy ways — on people, on medications, drugs, alcohol, on organizations, on objects, on ideas. I am willing to release these things and regain my power and control over my life10. TAKING IT FORWARD: I am ready to make positive choices and to see them through. I am open to new ideas and ways of living. When I have made these changes part of my life, I can also help others.

Grady, Ph.D. is a registered psychologist in , BC who has been working with people with chronic health problems since 1992.last edit: 12 June 2008 http://briangrady.wordpress.com/

Ramblin' RoseModerator COLTS ROCK! (Jets pffbbtt!) > To: Neurosarcoidosis > Date: Wed, 12 Jan 2011 16:34:24 +0000> Subject: My husband has sarc and he has an appointment on Monday with a Neurologist> > Hi, I am joining after reading several of the posts.

My husband was diagnosed 10

years ago. The symptoms started with his eyes and it is getting worse. He has limited vision so he cannot drive and he had to stop teaching about 6 years ago. SS wa denied twice which really upset him but we just keep on going. We have been best friends since he was 16 and I was 15. He now has the shooting pains in his feet and legs. He also has weakness in his legs and has started sleeping all the time. Can anyone provide input about what to expect at the doctor? Anything specific we should ask? I can only imagine how he feels. I have read several of the posts and it breaks my heart. I know this is not about me but I am terrified. (I don't show it to him although I think he suspects I am) You have to relize that he went to college on a football scholarship. When I went outside to clean the driveway of snow I saw the look on his face. There is really no one to talk to about the disease...I don't really want to burden anyone and several that know get a

blank look when I tell them about the disease. I have to admit it helped me greatly to read the post to realize that he is not the only one going thru these issues.> I saw several articles about using the anti-inflammatory diet will help. Has anyone used this? Thanks for listening!!!! God bless you all. Jo> > > > > ------------------------------------> > ~~~~ *** ~~~ *** ~~~ *** ~~~~> The Neurosarcoidosis Community> > > > Message Archives:-> http://groups.yahoo.com/group/Neurosarcoidosis/messages> > Members Database:-> Listings of locations, phone numbers, and instant messengers.> http://groups.yahoo.com/group/Neurosarcoidosis/database > >