Saturday, March 29, 2014

THE HOAX OF MULTIPLE SCLEROSIS AWARENESS MONTH

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

6 comments:

Lori K. said...

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

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Bruce Gerencser said...

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

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Lisa Emrich said...

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

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hanginbyathread said...

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

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Diane J Standiford said...

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

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OldLady Of The Hills said...

It is all so ridiculous, really. I was diagnosed with MS in 1990 and I find no better "awareness" of this chronic disease than there was almost 25 years ago.

Oh, there are more books about it, more blogs, more people on social media sites who tell their stories, but enter the average person's life and "Is that Jerry's Kids disease?"

My assisted living home has ONE other person with MS. And what I am about to write is based on what I have read from 1,000 Face Book 'friends,' Twitter MSers, doctors, nurses, physical therapists, cab drivers, grocery clerks, authors with many letters (PHD, BS, etc)  behind their names, and family members---still so many laughable ideas about what MS is.

It makes me so sad for those who do indeed suffer from MS. Yes, suffer, many of us suffer. While I once fought to get "disabled" instead of "handicapped" into our lexicon, so many people with disabilities decided they didn't want the label of being disabled, well, I give up and so has America.
"Handicapped" is the most used word and I don't have a problem with it. Nobody labels me anyway. Only YOU can allow yourself to be boxed or labeled. But, I swear some people don't want to say they have MS.

Worse than that is the many who diagnose themselves with HAVING MS! Why a person would want to do that is beyond me. They have a pain or numb foot, Google it and VOILA--MS! I guess, or some doctor Googles it. 

AWARENESS? What a joke! We are not even aware if we HAVE multiple sclerosis!

I hear this so often it makes me want to throw up: "I have progressive MS." Then they go about telling of their latest walk or trip by plane to Disneyland, oh, and if I DARE inquire when they were diagnosed (DX) they refuse to answer or say 10 years ago. NO NO NO

There are stages of initial DX of MS, the rarest is primary progressive MS. And if you get that DX you will not be on a plane for a fun trip any time soon. In fact, you will likely be dead in a few years. There will be no blog from someone with PPMS. (The exception is if you were misdiagnosed to start.)

What people MEAN to say is they have progressive MS, well, DUH, THAT is the most COMMON form of the disease. Most of us will progress towards disability, some faster than others, but that is the disease you have. AWARENESS? So many people with MS don't even understand the different stages of the disease.

The "Walk for MS" always cracks me up. Yeah, I did one in the first years when I could still walk that far. I walked for AIDS. I LOVED to run and walk. Now I need a power chair. But all these walks sure make people think that walking with MS is totally doable and let's combine the two to raise money! "BOWL FOR MS"

How about some real awareness of how this disease destroys lives? Do you think maybe people might want to give money to help end suffering? The photos from the "Awareness" Walks show happy, smiling, laughing people--PARTY TIME!

The biggest advancement in MS is diagnosing earlier, ergo, healthier people who will experience longer remissions, still walk and run for miles and they will attribute their good health with some diet or exercise or their POSITIVE ATTITUDE!   sigh

Sigh, because that was me in the 1990s. Today I would have been diagnosed at age 10 or 25. At 25 I had all the text book symptoms, but I hated doctors and forged ahead until I got over whatever was bothering me. (I thought I had a brain tumor, but my partner was ill at the time and, well, priorities.) It wasn't until age 33 that I was DX MS.

Anyhoo, good luck finding a healthy person who can tell you what MS is. Good luck finding someone with MS who is aware of the history of their disease from 1975--2014.

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