MS Maze

Bad handwriting. It’s one more item on the growing list of ways that MS is reshaping my life — another loss of an every day task formerly taken for granted.

As MS patients, we know about loss, great and small. Seeing, hearing, speaking… running, walking, standing… driving, earning a living, signing on the dotted line… all contribute to the ever present threat to independence.

Maybe that’s why each new item on the list, no matter how small, causes us to cringe. We view it as another step toward that uncertain future we all fear, but hope will not come to pass. Dwelling on the worst case scenario does us no good, so we force these thoughts to the furthest recesses of the mind. We focus on today, and the abilities we have here and now, in a natural expression of self-defense. Or is it defiance?

Read: The Handwriting on the Wall

“Funny, we spend our lives waiting for tomorrow. You know what I mean. Someday this will happen… and someday that will happen… but it never happens today. It’s like that old sign you’ll see outside restaurants and bars that proclaims, “Free Beer Tomorrow.” Well, you can go stand and wait for as long as you want, but I guarantee that you will never be standing there on a day that’s labeled ‘tomorrow.’ Tomorrow is, after all, always at least one-second out of reach.”

National Family Caregivers’ Month got Jake to thinking. So how does free beer figure into it? Find out by reading Jake’s latest post on The Health Central Network’s Multiple Sclerosis Central.

Read:  Free Beer Tomorrow, by Jake Crest

November is National Family Caregiver Month.

The full-time caregivers who take care of the chronically ill or elderly, to the exclusion of most everything else, are true angels. Many must leave their jobs and gamble with their own financial security. Depression and a sense of isolation are common to full-time caregivers. When speaking of health care reform, this is a large group of individuals who need to be recognized. We must do all we can to support these kind souls who sacrifice so much for the benefit of others.

Read: Celebrating Caregivers

Additional Resources:

Top 10 Ways to Celebrate National Family Caregivers Month 2008

National Family Caregivers Association

Caregivers’ Resources USA.gov

Caregiver.com

Multiple Sclerosis Central: Caregiver Perspective

Sunday isn’t meant for chores. Sensing the waning days of autumn at its finest, we decided to take a scenic drive. On a whim, we set off for Harper’s Ferry, West Virginia, where the water meets the mountains in a spectacular display of natural beauty.

Built in the 1700’s, this tiny town was not meant to accommodate the handicapped. With that in mind, I set off with some good, solid walking shoes, a trusty cane, and a patient husband. The air was cool and crisp; the ground was covered in leaves that crackled and danced as we walked.

Harper’s Ferry, rich in civil war era history, brings the past to life, however briefly. This had the makings of a perfect day and, indeed, it was.

Read:  Autumn’s Bounty Serves Up Perspective

We’ve turned the calendar page to November, we’ve set the clocks back an hour, and the holiday season is officially in full swing.

Thanksgiving is a day to gather with family and friends and to celebrate our blessings. For many women, this meal involves days of preparation and additional responsibilities. For women who live with multiple sclerosis, the Thanksgiving holiday can be overwhelming and exhausting.

Early planning for Thanksgiving can be the difference between a warm family gathering and a physical and emotional battering.

Are you exhausted just thinking about it?

Read:  How to Survive Thanksgiving: Tips for the MS Patient

I prefer not to use a cane, but when I do I have a delightful assortment to choose from.

Back in 2003, when I set out to purchase my first cane, I gravitated toward “quiet” canes… canes that would not command much attention, but Jake stopped me in my tracks. “If you’re going to use a cane,” he said, “USE A CANE! Make a statement! Be bold!” With that advice in mind, I chose a red paisley cane that was sure to get noticed. I never regretted that decision.

Beyond the fashion statement, though, my cane announces to everyone in the vicinity that I am not quite able-bodied, and that maybe I should be given a little extra slack. It is a symbol as clear as the handicapped placard in a park…

Read: Dual Purpose Cane

I’m amazed at how many folks out there just don’t understand. They think that just because they’ve always been lucky enough to have been covered by an employer’s health care plan, that everyone enjoys the same benefits. They say, when told that someone is struggling with private insurance, “Why don’t you just go get a job?“ or “Hey, just let your insurance company pay for it?“, or — and here’s the one I like — “Just call another insurance company and switch!“

That last one tells you real quick that the person you’re talking to is either very healthy or employed by a good size company that offers their employees health insurance plans. Because anyone who has ever had a health issue and who is not covered by employer based health insurance KNOWS, beyond a shadow of a doubt, that you do NOT just pick up the phone, call some other insurance company and tell them you want to switch.

Not in this country. Not today.

Read why Jake hopes for a better day:  “Winds of Change”

We voted… did you?

We voted at 2:30 p.m. here in rural Virginia and faced no lines, no delays, and no problems with the touch screen voting machine. Pleasant experience all around.

Now all we have to do is kick back and await the results.

Nobody likes a complainer. I know I don’t, and that’s why it’s I often keep MS symptoms to myself… but not today. Today I lift the veil and and share the every day annoyances of living with MS.

Of course, I know I’m in good company. What’s going on behind your veil?

Find out what’s behind my veil… then share your own secrets.

Life Behind the Smile: Confessions of an MS Patient

We received a flyer from the Blue Ridge Chapter of the National Multiple Sclerosis Society yesterday that did my heart good.

A brief application form is all it takes to get them started on a search for volunteers to rake leaves for MS patients who can’t do it themselves.

I won’t need to use this service because hubby, despite back troubles, is capable of taking care of our tree-lined property himself. But what a welcome relief for people who are not so fortunate!

In a quiet way, I set out to be an advocate for MS patients like me, joining a long line of passionate patients and bloggers. I didn’t set out to become an activist. That’s for the bold and the outgoing. All that changed when the health care crisis came to call on my home.

I’m not sure what criteria should be met before you can call yourself an activist. The dictionary defines activist as: “an especially active, vigorous advocate of a cause, esp. a political cause.” Okay, so I’m an activist.

If you are participating at The Health Central Network, if you host your own health-related blog, if you write your representatives in congress, if you shout from the rooftops in an effort to educate and inform… you are a health care activist.

Together, we can make a difference. Let’s start by exercising our right to vote on November 4.

Read:  When the Health Care Crisis Called, the MS Activist Answered

Two recent developments in multiple sclerosis research offer renewed hope to patients. Hope that we will soon add new weapons to the arsenal in our war against disability. I, for one, am enthusiastic about the potential of fumigate and alemtuzumab.

Clinical trials take a long time, and it is frustrating to wait… and wait… and wait while MS launches new attacks on our already weakened bodies. Patience in these matters is not easy to come by. On the other hand, it is very encouraging to learn of new advances in research. Each new piece of the puzzle, each new drug approved for market, is another step toward keeping MS under control or… dare I say it… a cure.

Read:  MS Research Offers Hope - Hallelujah!

“What was that supposed to be?” My husband often asks the question in a playful manner. Playful, because he knows exactly what it is.

“What was that move?” I’m teasingly asked the question at work.

Curious strangers avert their gaze and say nothing. I wonder if they are making silent judgments.

So, what is it?

It’s my inability to walk a straight line. I tend to veer right. I lose my balance. I lose my rhythm. I need a wide berth to accommodate my arms, which occasionally fly out to the side to correct my faulty steering.

Read: My Life on a Surfboard

Jake, writing at The Health Central Network’s Multiple Sclerosis Central, compares the health care proposals of John McCain and Barack Obama. With just a short time left to make that crucial decision, it’s worth a closer look.

Excerpt:

I’m worried.

My wife, Mandy, and I are firmly middle-class. We’re not going to retire ultra-wealthy, but we really don’t expect to be living in cardboard boxes either. We have dreams of perhaps making one more move and buying a nice little house somewhere closer to the ocean where we can take walks along the sand and pursue our online careers, even in retirement, in an place where we want to be instead of a place where we just happened to land. We talk about this a lot, but with the housing crash, and the Wall Street crash, it’s starting to seem more and more like just that… a dream.

Read Jake’s post in its entirety. And don’t be shy… leave a comment with your thoughts on the matter.

A Crucial Decision

Most of us are not in the market for a free ride, but we do want more control over our own health care. To do that, we need options.

Read what’s on my wish list for health care reform… then tell me what’s on your wish list.

Health Care Reform Part Two: We Need Options