MS Maze

Simple human dignity and compassion. It’s hard to juxtapose that with end-of-life medical interventions that serve only to prolong pain and suffering, often against the wishes of the patient, while adding thousands of dollars to medical costs for no benefit.

Faced with such suffering and no hope of recovery, would you opt out if you could?

That’s exactly what one Washington woman did recently, becoming the first person to take advantage of the state’s Death with Dignity law. Diagnosed with stage 4 pancreatic cancer and certain death, she made a conscious, well thought out decision about her own death…

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Dignity and Compassion in Assisted Suicide

Sometimes, every second counts.

Do you know what F.A.S.T. stands for?

Find out HERE

In an emotionally charged day, the American Cancer Society Action Network, along with patients, survivors, and caregivers, visited Capitol Hill to bring attention to the sobering reality of cancer patients trying to navigate the health care system while fighting for their lives.

What they wanted to get across, and what is evidenced by a ACS CAN poll, is that:

* Nearly one in three people diagnosed with cancer under the age of 65 has been uninsured since their cancer diagnosis. Scientific research shows that being uninsured can adversely impact your chance of survival.

Photo and video courtesy of American Cancer Society Cancer Action Network

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Cancer Patients Plead for Comprehensive Health Care Reform

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

Imagine looking into the mirror and not recognizing yourself. Or the pain of not being recognized by someone who has known you your entire life. Alzheimer’s disease robs its victims of 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.

HBO, teaming up with the U.S. National Institutes of Health’s National Institute on Aging, in its 4-part series, “The Alzheimer’s Project,” seeks to bring this mysterious illness out of hiding and into the light of day...

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Alzheimer’s Disease Out of the Shadows

Did you know that it is still legal in nine states for insurers to reject applicants who are survivors of domestic violence?

Or that

* less than 50% of women can get employer-based health insurance and even when they work for an employee that offers coverage, one in six is not eligible to take it, often because they are part-time workers;

* a 22 year-old woman can be changed one and a half times more than a 22 year-old man in the individual insurance market;

* more than 50% of women have delayed care due to cost;

* state and federal laws that protect individuals with employer-sponsored insurance do not apply to health insurance sold in the individual market. These include anti-discrimination protections in the Civil Rights Act of 1964 and the Pregnancy Discrimination Act of 1978, as well as the Health Insurance Portability and Accountability Act of 1996 (HIPAA)…

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Why Women Must Lead the Fight for Health Care Reform

I am the voice of doom. At least that’s what I’ve been told. A recent commenter said that I rob people of hope, have already lost my battle with multiple sclerosis because of my attitude, and I am a victim of doctors and big pharma.

Apparently, I’m the voice of doom because I caution my fellow MSers to be wary of scams touting “cures” for MS. If I had a dollar for every time I’ve been offered the cure for MS, I could retire. Unfortunately, these scams are intended to make a buck off our hope. I don’t mean to rob anyone of hope. In fact, I’m filled with hope at recent medical breakthroughs. I stand by my advice… be wary of cures that land in your email inbox and always perform due diligence.

I was also taken to task for not acknowledging remission, but he obviously doesn’t see the distinction between “remission” and “cure.” Then there’s the theory that I’ve lost my battle with MS because I believe that step one is to accept the diagnosis. I simply can’t follow that train of logic. I can’t exactly wage war against something I refuse to acknowledge. If I didn’t believe I have MS, I’d still be trying to figure out what’s wrong with me, not learning how to treat it.

Maybe he meant “prognosis” rather than “diagnosis.” Even so, I haven’t accepted any prognosis and, in fact, haven’t been given one. It’s awfully hard to give a prognosis to an MS patient, and most doctors won’t do it.

Most importantly, I haven’t lost my battle with MS — not by a long stretch. I’ve accepted that I have MS and I’ve moved on from there. I maintain a healthy lifestyle. I’m living a good life; I’m productive and happy. Life is good. Very good.

I’ve had my troubles with doctors and I admit to a love-hate relationship with pharma, but I’d hardly call myself a victim. Yes, I choose to take one of the disease-modifying drugs for MS, but no one is making me do it. I’ve educated myself as much as possible and made the decision that I believe is best. There is no sinister plot at work to force me into compliance.

But here’s the real issue. It is something I’ve run into time and time again: harsh judgement of other MS patients and how they have decided to deal with it.

How and why we each come to our decisions is complicated and personal. It is not my place to tell you what you should do, nor is it your place to tell me. Our symptoms, other medical conditions, family, medical advice, and finances are just a few of the issues we each have to take into consideration.

My choice is to combine a healthy lifestyle with a healthy mindset, along with a dose of modern medicine. I am fortunate in that I do not suffer from depression, a common symptom of MS, so I find it rather easy to keep a positive frame of mind most of the time. That’s not to say that I never have a negative day. But the battle is most assuredly not lost.

I love when people with MS reach out to each other with news and information and mutual support. Sharing what we’ve learned is the single best thing we can do for each other. But before we hit that comment button to slam someone else, let’s stop give it some thought. If you read it fast, you might want to read it again to make sure you understand the context in which something was said. If you disagree with the writer, it’s not difficult to debate without attacking — and is a much more productive way to get a point across.

If we, who have MS, can’t support one another, how can we expect others to?

Note: This article has been cross-posted on BlogHer.com, where it was also mentioned in Catherine Morgan’s, blog post, “Chronic Illness: Claims Of Cures Are Often Scams.”

“First, the rising costs of health care must be brought down. Second, Americans must have the freedom to keep whatever doctor and health care plan they have or to choose a new doctor or health care plan if they want it. And, third, all Americans must have quality, affordable health care.” – President Barack Obama, May 11, 2009

In Monday’s historical meeting that included insurers, hospital representatives, physicians, medical device companies, pharmaceutical companies, labor, and administration officials, the focus was on comprehensive health care reform as key to laying a new foundation for our economy.

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The Tipping Point on Health Care Reform

I’m a Myelin Man. At least that was my result after taking the Myelin Repair Foundation’s quiz on FaceBook.

Everyone with multiple sclerosis knows what myelin is… or do they?

Find out how much you know. Take the Facebook Myelin Quiz

In the midst of a major public health emergency, should the uninsured receive care… even if they are not able to pay? Assistant Senate Majority Leader Dick Durbin (D-IL) and Representative Lois Capps (D-CA) think so.

They have introduced legislation to provide emergency treatment for victims affected by a major public health disaster, regardless of their health insurance status or ability to pay. The Public Health Emergency Response Act (PHERA), is intended to guarantee that every American will be able to receive the medical treatment they need following public health emergencies such as natural disasters, terrorist attacks, or contagious diseases like the H1N1 (swine flu) outbreak…

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Public Health Emergency Response Act: health care for all in a crisis

Stroke is the third leading cause of death in the United States and a leading cause of serious long-term disability.

Health care reform is what we want our lawmakers to do, but there are some things we need to do for ourselves, too. Those of us who are not medical professionals can learn some basic facts and promote awareness so that we can help prevent the serious consequences of inaction.

May is National Stroke Awareness Month. A stroke occurs when the blood supply to the brain is cut off, causing brain cells to die. Permanent disability or death can result. When signs of stroke appear, every second counts.

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National Stroke Awareness Month: Every Second Counts