MS Maze

Multiple sclerosis. Is that the disease that puts you in a wheelchair or leads to a nursing home? Montel Williams… Richard Pryor… Annette Funicello… all names associated with MS, and isn’t there a mountain climber or two that have it?

Confused? You are not alone. That’s why the Multiple Sclerosis Foundation recognizes March as National MS Education & Awareness Month, and the National MS Society designated March 8-14 as MS Awareness Week.

Throughout the month of March, I will offer glimpses into my own life with MS. While there is no such thing as a typical case, those who are familiar with MS will nod in recognition. If you are not familiar with MS, please allow us a few moments of your time during MS Awareness Month.

A Diagnosis Odyssey

It began with a seemingly benign but persistent tingly feeling in my upper right arm. It was the kind of thing you tend to dismiss and certainly not the kind of thing that makes you rush out to see a doctor.

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Multiple Sclerosis Awareness Month: A Diagnosis Odyssey

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In the midst of a 30-inch snowstorm, I felt a mixture of unearned guilt and helplessness. From the kitchen window I peeked out at my husband every so often as he labored in the wintery whiteness.

Glancing around, I observed an elderly neighbor to one side and young children on the other, all tackling the mountains white stuff with a vengeance. Meanwhile, I was warm and dry, but not completely unproductive. I tackled a few chores that needed attention around the house, reminding myself that I, too, was making a contribution. But the question remained… why did he lie to me?

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Lie For Me

photo copyright: WebCamp One LLC

They are the most vulnerable among us, completely dependent on us for care, safety, and food. They are our infants and young children and we owe them at least that much. If there is valid concern over the safety of their food supply, it is incumbent upon us to act in their best interests.

Consumer advocates have been sounding alarm bells for years about the possible health risks of Bisphenol A, otherwise known as BPA, commonly found in plastic food containers, baby bottles, and in the lining of metal food and beverage cans, including those containing baby formula.

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Protect our Young: Get BPA Out of the Food Supply

Photo: U.S. Centers for Disease Control and Prevention

One of the most frustrating aspects of life with chronic illness is the constant state of flux. It is true of all types of multiple sclerosis, and relapsing/remitting MS certainly lives up to the name.

The fact that many of these on-again off-again symptoms are invisible to observers makes it a particularly difficult series of emotional adjustments, especially if you are prone to worry about what other people think.

It’s hard to be taken seriously when people see you looking the very picture of health one day and claiming to be the opposite the next. It probably doesn’t help their perceptions when we go to great lengths to hide the truth.

We hear a lot about…

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Sharing a Life Altered by Multiple Sclerosis

Photo: http://www.sxc.hu/photo/733600

Elder abuse is a growing concern these days, as awareness about the physical, emotional and financial abuse of elders has steadily increased since the 1970’s. Many cases of elder abuse go unreported every year, as some aged individuals are either embarrassed by or in denial of the abuse they are experiencing. For this reason, it is imperative that society as a whole begins to look out for our elders and watch for signs that abuse is taking place behind closed doors. The best way to effectively keep a watchful eye on our elder population is to educate ourselves on the signs and symptoms of elder abuse, as it relates to both the perpetrators and the victims of the crime.

Perpetrators

Research shows that the highest statistically proven perpetrator population in almost all elder abuse cases is found in Caucasian males, ages 41 through 59. The one exception to this rule is in cases of neglect, where Caucasian females were slightly more represented than males (according to the National Elder Abuse Incidence Study). While there are many good caregivers that fit this target perpetrator profile and many abusive caregivers that fall outside of this profile, you would be wise to keep an extra eye on caregivers that fit this description.

In addition, you would be wise to watch out for signs that caregivers (whether they be family members of the aged or hired staff at treatment facilities) are struggling with any obvious addictions, which would make them more likely to take advantage of elders in order to feed their habit.

Victims

When the aged are experiencing abuse behind closed doors, many will exhibit the classic symptoms of withdrawal, moodiness or self harm. It should be noted that the presence of these symptoms does not necessarily mean that elders are experiencing abuse, as people sometimes exhibit these behaviours due to fears associated with growing old. However, these symptoms should serve as red flags for concerned friends of the elderly and should prompt a deeper examination of the quality of care they are receiving. Check their medical alert bracelets for pre-existing conditions.

In addition, if you have an aged family member that has recently entered into a new romantic relationship, you should take a closer look to ensure that they are not falling prey to a “sweetheart scam”. Predators sometimes target lonely, aging populations in order to earn their trust and then steal large amounts of money and possessions from them. While genuine romantic relationships can certainly begin for elders late in life, be sure to look out for your elders by getting to know their love interests on a deeper level in order to ensure that their motives for romance are pure.

This is a “sponsored post.” The company who wrote and sponsored it compensated me via a cash payment, gift, or something else of value to post it. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

It’s your body, and no one has more incentive to take care of it than you do. You can’t depend on anyone else to take the reins when it comes to your health. The responsibility lies with you. Don’t be a passive patient; be a squeaky wheel.

Read this post in its entirety and find how you can:

• Be pro-active about your health.
• Foster a strong doctor-patient relationship.
• Advocate for yourself and your family.
• Research and learn — seek out multiple trusted sources for medical information.

Health Care Self-Advocacy: Be the Squeaky Wheel

Photo: http://www.sxc.hu/photo/961618

The email appears to originate with the U.S. Centers for Disease Control (CDC) and speaks of a “State Vaccination Program.” The reader is prompted to create a personal H1N1 (swine flu) Vaccination Profile on the CDC website.

WARNING: The email is a hoax — nothing but a phishing scam. The CDC has no state vaccination program requiring registration.

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Don’t Fall for this H1N1 Scam!

Photo: U.S. Centers for Disease Control

Sometimes the positive attitude patrol functions as a guilt trip in disguise. Are they really promoting a positive attitude in the best interest of someone else… or is it a lopsided attempt to protect themselves from having to deal with someone else’s disease or disability?

Keep up the positive attitude because I can’t deal with your problems.

Do people with health concerns have a responsibility to people around them… to protect them from dealing with the uncomfortable?

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When Positive Attitude Goes Negative

Photo Credit: http://www.sxc.hu/photo/1108245

In the ongoing debate about health care reform, we often speak about access to health care, but there is another element to the debate that is equally important — what kind of care are you getting?

Health care is built upon the doctor/patient relationship, but that crucial relationship has changed drastically over the last decade. Without that fundamental building block, the practice of medicine suffers greatly.

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What happened to patient-centered, compassionate medicine?

Photo: U.S. National Institutes of Health

Photo: CDC

It is one of the top ten leading causes of death in the United States, responsible for an estimated 99,000 deaths per year. It is largely preventable and hits you when you’re down.

It is health care-associated infection. You get it when you go to the hospital for treatment, but end up with the added problem of a life-threatening infection.

Mandatory public reporting of health care-acquired infections and preventable medical errors will spur quality improvement. You can help by asking your representatives to support legislation to improve the prevention, detection, and treatment of healthcare-acquired infections.

Find out how you can be part of the solution… read this post in its entirety:

What Causes 99,000 Deaths and is Largely Preventable?

As many as 5 million Americans already have it, and every 70 seconds someone else will develop Alzheimer’s disease.

Alzheimer’s disease a degenerative brain disorder that affects memory and cognitive functioning, robbing its victims of the ability to care for themselves. Imagine looking into the mirror and not recognizing yourself. Alzheimer’s disease steals memories, the precious bits and pieces that make up our lives. It is a disease that is equally as horrifying to those who must bear witness.

There is no cure yet, but treatments for symptoms, combined with the right services and support, can make life better for millions of Americans.

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Memories Lost… Please Help

A small part of the health reform ‘debate’ focuses on illegal immigrants and conservatives’ desire to keep them from receiving public sponsored health care in our nation’s hospital emergency rooms. Today — right now — hospital emergency rooms have a mandate to respond to any life threatening injury or illness that comes through their doors. They need not treat injuries that are less than life threatening, but they DO have to screen you in order to make that determination.

I’ve listened while critics charge that Democrats refuse to add language to any of the bill drafts that would plainly state ‘no illegals covered.’ Folks, that’s a good thing and it is my hope that those drafting the bills stick to their guns and continue to refuse to add such draconian language. Even the slightly observant must realize what will happen when poorly trained or overworked personnel start refusing care to people who are unable, for any of a multitude of reasons, to prove their citizenship when faced with a life or death health crisis.

Ask yourself — do you carry concrete proof of citizenship with you at all times? If so, are you absolutely certain that you’ll have it with you when that heart attack hits? What’s going to happen when you’re wheeled into the emergency room if you’re unable to speak and/or can’t prove your citizenship? Will the ambulance personnel even take you to the hospital without such proof?

The answer is that there’s a pretty good chance you’re going to die.

What happens if you’re from another country and that you’re simply visiting America? “Oh, those are visitiors. Of course we’ll take care of them,” you say. Really? Can you tell the difference between a citizen, a visitor, and an illegal when you’re pulling their unconscious body out of a smashed rental car or standing over them when they’ve passed out in the supermarket checkout lane? Really — can you?

Since there is, short of a passport, no absolute physical proof of US citizenship of which I’m aware, adding language that says ‘no illegals covered’ places us a mere hop, skip, and jump away from passage of another bill mandating a national identification card. All you folks who are riled up at big government and its growing role in your life are just going to love being forced to carry that card. Really — you will, because government, with the help of some good ad agencies, country singers, sports figures, and race car drivers will make you believe in it. They’ll make it so you just can’t wait until you’re able to get one. You might even be able to personalize the back of it with pictures of your dog or kids. How great is that?!

I’m fairly certain that if any of us were visiting Haiti, Mexico City, Montreal, Paris, Riyadh, or Bostswana and we got deathly ill or badly injured, that we’d be taken to a local hospital and that medical personnel would do their best to help us. Don’t people who are in our country, regardless of status, deserve, at a minimum, the same modicum of humanity that we all expect to receive for EMERGENCY health care treatment in any other part of the world?

Of course they do.

Multiple sclerosis can complicate a marriage, often forcing both individuals to adjust to drastic changes in expectations or marital roles — or it can bring you even closer together. Perhaps it will do both.

Maybe MS was part of the picture prior to the relationship or maybe it was diagnosed later. Either way, it has the potential to dominate every facet of your lives. It’s easy to become a little self-absorbed when living with chronic illness and, for the spouse, it’s normal to resent MS and the impositions it imposes. The trick is not to resent each other…

Photo credit: http://www.sxc.hu/photo/1152277

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MS in the Marriage

It’s a fine line, when a spouse is also a caregiver. In 2004, when I received a diagnosis of MS, I had NO choice in the matter. The man in my life DID. Imagine the task of having to weigh that issue and actually choose. No, he never hinted at his thought process and, no, he never showed the slightest sign of indecision, but I have to assume there was some wrestling going on there. We were married the following year.

I have Relapsing/Remitting MS, so much of the time the role of supportive spouse is sufficient and I take care to maintain my independence. I want him to think of me as his wife, not his patient.

Sometimes we’re in that middle ground, and I’ll ask him to carry something, or I’ll leave a chore or two undone. We’ve worked out a silent system of sorts. If I leave the laundry basket full of clean clothes at the bottom of the stairs, he’ll pick it up on his way by and so forth. We hum along like a well-oiled machine in this mode.

When we reach that full blown relapse, however, Jim becomes the caregiver. Without much fanfare, he takes over my chores, the driving, the shopping, shuttling me to the doctor. He’ll call my office and let me sleep in. When I shower, I’m aware that he’s got one precautionary ear tuned in for signs of trouble. He’ll load and administer my daily injections when necessary. Several times a day, I’ll hear his voice coming from our home office, “Hey, Babe…how’re you doing out there?”

MS is clearly OUR issue, not mine. While I carry the load of the physical manifestations of MS, Jim carries the load of the on again, off again caregiver and spouse. Together we share the burden of medical and health insurance woes and working our lives around the relapses. It is a challenge we accept and share as a couple. He does what is needed without hesitation or complaint. In return, I show my appreciation whenever and however I can.

Whether it’s your spouse, your parent, your sibling, your child or a friend, be aware of the silent burden of your helper or caregiver. I sometimes keep symptoms and frustrations to myself because I don’t want to complain too much. My guess is that my husband does the same.

Show your appreciation. Pay attention to the little things as well as the obvious things that are done on your behalf. Imagine how you would feel should roles be reversed. It’s not so easy to watch someone you love struggle.

Have you hugged your caregiver today?

originally posted September 12, 2007

We shed no tears, but bid a fond farewell to Jake and Mandy Crest as they ride off into the sunset.

When we started blogging in the summer of 2007, we felt strongly about maintaining our privacy, not only for ourselves, but for those whose lives are interwoven with our own. “My name starts with A, so I’ll stick with that — I’ll be Amanda,” I decided. Taking the name Jake, Jim said that if my name really was Amanda, he’d be calling me Mandy. One of my sons came up with the Crest part and our alter egos sprang to life.

As our blogging blossomed and we expanded to other sites, Jake and Mandy took center stage. In time, we realized that we could be much more effective if we were to “come out” and be ourselves. Projects that were begun under Jake and Mandy continued, but we used our real names for other ventures.

With the last of the ongoing work of Jake and Mandy Crest reaching its conclusion this week, Jake and Mandy become nothing more than sweet memories, but Jim and Ann shall carry on. However you’ve come to know us, we remain dedicated to reaching out to others — patients and caregivers alike — who live with multiple sclerosis.

We invite you to visit us on MS Maze where we will continue to slog through the maze of multiple sclerosis and health care policy issues.

As always, we encourage comments, questions, and emails. We love to hear from you!

email: writer@webcampone.com

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