#TBT - Ann and Mitt Romney open up about her MS battle

Anonymous says:

December 3, 2015 at 9:49 PM

I was diagnosed with MS 15 years ago. During that time I have talked to other MSers and actively read their blogs and forum entries. One of the things I noticed is that most MSers do not complain about their circumstances and many losses. For the majority of MSers who have been diagnosed with MS before they turned 40, these losses are huge.
In our society we are expected to make the best of a bad situation. Even though our brains are being subjected to a catastrophic and progressive disease process that takes away our most intimate memories and identities and destroys our ability to support ourselves we feel ashamed that we cannot manage our personal affairs or participate in the activities that the others take for granted.
Like everyone else we had our hopes and dreams. The many levels of loss and debility we experience stand in sharp contrast with what we thought our lives would be like when we turned 30, 40, 50 or 60. Even if we wanted to discuss our losses and needs, the brain fog, crushing fatigue, diminished vocabulary and difficulty with diction and syntax keep us from sharing our experiences with others. Even our families abandon us.
We marvel at the resources that are being marshaled to find a cure for MS but somewhere the problems we experience day to day while we patiently wait for a cure go unnoticed. We hope for and patiently wait for a cure but seldom talk about the disruption that MS has caused us during our vigil. Although they will often tell us that we look good (ie normal), the larger society can never really understand the many layers and the complexity of our disease processes. We are grateful just to be alive and to have teams of top scientists work every day to find a cure for our diseases but when we lose our vision, our careers are cut short, our spouse divorces us, we are forced to sell our home and live in the margins of society.
Many of us had full lives and expected to have a normal life in the future. None of us did anything to deserve this catastrophic failure of our essential selves. Even when we are feeling desperate very few of us make any demands of the people or institutions around us. Our failure to advocate for ourselves is due to the disruption of our executive functions and limbic system. One of our greatest disappointments is finding that people have been taking advantage of our impairments.
People who do not have MS are intrigued by the many efforts to treat or cure the disease but generally know nothing about the disease. But they cannot imagine how difficult it is for us to do simple things like shop for food, fix a meal, get to and from our medical appointments or even a laundromat, refill our many medications, obtain and fill out an SSDI application, be forced to sell our homes, apply for a rental, seek financial assistance and find there is none, do basic math, pay our bills on time, loose everything through a divorce, respond to an insurance denial, negotiate repairs on our home or car or even return a spoiled product back to the grocery store. If we are able to drive and have a car we have no way of knowing if the mechanic is telling us the truth when he hands us a bill for $2500 for a repair we don’t remember authorizing.
Most people who have been diagnosed with MS live in a separate world of poverty or near poverty with limited to no human contact. It is hard for us to retain any sense of dignity when we are unable to name the medications we take, recall the names of our physician, neighbor or a relative, do basic math, forget to button our shirt or zip our pants, cry or laugh at inappropriate times, fall in public or do not have enough money at the check-out stand.
One NMSS member wrote:
“I learned when one sales person returned a twenty to me, that I was giving clerks two twenties for an eighteen dollar purchase. only one gave me the money back. I lost a lot of money that way. Now I use credit cards and checks, i only carry twenty dollars in my wallet, most times it is empty.”(sic)
Our lives are more difficult because we often forget appointments, lose receipts, file papers in the wrong folders, cannot read the print on a government form or communicate verbally without slurring our speech, have to find transportation, pause to remember a name, transpose words, etc. One of the odd things that plagues us every day is our inability to think of the correct word, name or phrase to use in a conversation but if we read or hear the word, name or phrase we remember it and can then use it in the correctly. For many of us the experience is like looking at an elaborate connect-the-dot puzzle but we cannot see the picture because we don’t have a pencil. This all leaves us vulnerable to exploitation and abuse but the ADA has no provisions that we can use to protect ourselves.
Our inability to make good decisions consistently and experience life in a way that any normal person would expect is complicated by the synergisms that our diseases, symptoms and medications create. This unique constellation of impairments predispose us to being slammed from one end of the emotional spectrum to the other, reacting to our environment and making impulsive decisions even when they have the potential to have an adverse effect on our lives. The entrance of an unrelated thought, a mash up of ideas that may or may not be related to the topic of conversation and emotions that are out of sync with the circumstances can make communication difficult. The medications we take pose significant health risks, interfere with attempts to control another disease or manage our symptoms, can aggravate symptoms and damage vital organs.
In addition, the periodic blindness, double vision, crushing fatigue and excruciating and unrelenting pain makes it all that more difficult for us to manage our day to day affairs. I am fortunate in that I have regained some of my premorbid abilities and capacities but there are still times when it is difficult for me to complete a thought or sentence or effectively participate in a conversation.
The mental and emotional filters that most people use when talking to others often fail us. We struggle with perception, deduction, organization, and decision making and new situations can sometimes disorient us but since we “look good” others see us not as disabled but as deeply flawed humans.
After my divorce I discovered that my ex had been telling my children that my symptoms were imaginary and that I was unfit to be their father. My separation from my children and the destruction of my family has been extremely hard on me emotionally. I have taken out most of my descriptions of how I feel and have felt in this letter because it has made little difference in the past. However, I will say that I know what it feels like to lose the will to live. It is not the desire to kill oneself; it is simply the inability to do what it takes to keep living.
Very few of us have the resources that Ann Romney has. It is a struggle for us pay our rent, buy groceries or to get the medical care and medications we need. MS has destroyed our hopes and dreams for a future and limits our ability to even imagine our lives in a safe and protected environment. I was 50 when I was diagnosed. I am fortunate in that I get both SSDI and a limited pension but I am forced to live in a 40 year old travel trailer. What is most disturbing is the fact that most MSers are diagnosed at a point in their lives when they have no investments, pension or savings to fall back on for the ensuing years and are expected to survive on $1000 – $1500 a month.
Government and private programs are focused on the treatment of and a cure for MS and do not have the resources to help MSers financially. Most of us have experienced rejection by our coworkers, abandonment by our friends and family yet we are expected to quietly live in one of the many human trash heaps on the periphery of society. It is a cliché for MSers but because we “look so good” it is difficult for others to see we need help. It is even more difficult for us to ask for it.

2 comments

Anonymous says:

December 3, 2015 at 9:49 PM

I was diagnosed with MS 15 years ago. During that time I have talked to other MSers and actively read their blogs and forum entries. One of the things I noticed is that most MSers do not complain about their circumstances and many losses. For the majority of MSers who have been diagnosed with MS before they turned 40, these losses are huge.
In our society we are expected to make the best of a bad situation. Even though our brains are being subjected to a catastrophic and progressive disease process that takes away our most intimate memories and identities and destroys our ability to support ourselves we feel ashamed that we cannot manage our personal affairs or participate in the activities that the others take for granted.
Like everyone else we had our hopes and dreams. The many levels of loss and debility we experience stand in sharp contrast with what we thought our lives would be like when we turned 30, 40, 50 or 60. Even if we wanted to discuss our losses and needs, the brain fog, crushing fatigue, diminished vocabulary and difficulty with diction and syntax keep us from sharing our experiences with others. Even our families abandon us.
We marvel at the resources that are being marshaled to find a cure for MS but somewhere the problems we experience day to day while we patiently wait for a cure go unnoticed. We hope for and patiently wait for a cure but seldom talk about the disruption that MS has caused us during our vigil. Although they will often tell us that we look good (ie normal), the larger society can never really understand the many layers and the complexity of our disease processes. We are grateful just to be alive and to have teams of top scientists work every day to find a cure for our diseases but when we lose our vision, our careers are cut short, our spouse divorces us, we are forced to sell our home and live in the margins of society.
Many of us had full lives and expected to have a normal life in the future. None of us did anything to deserve this catastrophic failure of our essential selves. Even when we are feeling desperate very few of us make any demands of the people or institutions around us. Our failure to advocate for ourselves is due to the disruption of our executive functions and limbic system. One of our greatest disappointments is finding that people have been taking advantage of our impairments.
People who do not have MS are intrigued by the many efforts to treat or cure the disease but generally know nothing about the disease. But they cannot imagine how difficult it is for us to do simple things like shop for food, fix a meal, get to and from our medical appointments or even a laundromat, refill our many medications, obtain and fill out an SSDI application, be forced to sell our homes, apply for a rental, seek financial assistance and find there is none, do basic math, pay our bills on time, loose everything through a divorce, respond to an insurance denial, negotiate repairs on our home or car or even return a spoiled product back to the grocery store. If we are able to drive and have a car we have no way of knowing if the mechanic is telling us the truth when he hands us a bill for $2500 for a repair we don’t remember authorizing.
Most people who have been diagnosed with MS live in a separate world of poverty or near poverty with limited to no human contact. It is hard for us to retain any sense of dignity when we are unable to name the medications we take, recall the names of our physician, neighbor or a relative, do basic math, forget to button our shirt or zip our pants, cry or laugh at inappropriate times, fall in public or do not have enough money at the check-out stand.
One NMSS member wrote:
“I learned when one sales person returned a twenty to me, that I was giving clerks two twenties for an eighteen dollar purchase. only one gave me the money back. I lost a lot of money that way. Now I use credit cards and checks, i only carry twenty dollars in my wallet, most times it is empty.”(sic)
Our lives are more difficult because we often forget appointments, lose receipts, file papers in the wrong folders, cannot read the print on a government form or communicate verbally without slurring our speech, have to find transportation, pause to remember a name, transpose words, etc. One of the odd things that plagues us every day is our inability to think of the correct word, name or phrase to use in a conversation but if we read or hear the word, name or phrase we remember it and can then use it in the correctly. For many of us the experience is like looking at an elaborate connect-the-dot puzzle but we cannot see the picture because we don’t have a pencil. This all leaves us vulnerable to exploitation and abuse but the ADA has no provisions that we can use to protect ourselves.
Our inability to make good decisions consistently and experience life in a way that any normal person would expect is complicated by the synergisms that our diseases, symptoms and medications create. This unique constellation of impairments predispose us to being slammed from one end of the emotional spectrum to the other, reacting to our environment and making impulsive decisions even when they have the potential to have an adverse effect on our lives. The entrance of an unrelated thought, a mash up of ideas that may or may not be related to the topic of conversation and emotions that are out of sync with the circumstances can make communication difficult. The medications we take pose significant health risks, interfere with attempts to control another disease or manage our symptoms, can aggravate symptoms and damage vital organs.
In addition, the periodic blindness, double vision, crushing fatigue and excruciating and unrelenting pain makes it all that more difficult for us to manage our day to day affairs. I am fortunate in that I have regained some of my premorbid abilities and capacities but there are still times when it is difficult for me to complete a thought or sentence or effectively participate in a conversation.
The mental and emotional filters that most people use when talking to others often fail us. We struggle with perception, deduction, organization, and decision making and new situations can sometimes disorient us but since we “look good” others see us not as disabled but as deeply flawed humans.
After my divorce I discovered that my ex had been telling my children that my symptoms were imaginary and that I was unfit to be their father. My separation from my children and the destruction of my family has been extremely hard on me emotionally. I have taken out most of my descriptions of how I feel and have felt in this letter because it has made little difference in the past. However, I will say that I know what it feels like to lose the will to live. It is not the desire to kill oneself; it is simply the inability to do what it takes to keep living.
Very few of us have the resources that Ann Romney has. It is a struggle for us pay our rent, buy groceries or to get the medical care and medications we need. MS has destroyed our hopes and dreams for a future and limits our ability to even imagine our lives in a safe and protected environment. I was 50 when I was diagnosed. I am fortunate in that I get both SSDI and a limited pension but I am forced to live in a 40 year old travel trailer. What is most disturbing is the fact that most MSers are diagnosed at a point in their lives when they have no investments, pension or savings to fall back on for the ensuing years and are expected to survive on $1000 – $1500 a month.
Government and private programs are focused on the treatment of and a cure for MS and do not have the resources to help MSers financially. Most of us have experienced rejection by our coworkers, abandonment by our friends and family yet we are expected to quietly live in one of the many human trash heaps on the periphery of society. It is a cliché for MSers but because we “look so good” it is difficult for others to see we need help. It is even more difficult for us to ask for it.

Shasha says:

December 3, 2015 at 10:00 PM

MS can be due to Celiac. Age 48 Celiac can get worse and having babies drains vitamins/good oils out of a mom. No gluten/dairy/soy/sugar/GMO…vitamins/good oil/minerals..probiotic….LDN…detoxing may help MS.

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