MS Maze

Health care reform is more than a political issue for me. It’s personal.

I write about health care reform and it is a frequent topic of conversation in my life. To those who stand against reform, nothing I say will sway them. They see even minor reform through the lens of socialism, or argue that the constitution does not grant us a right to health care, or speak of the tremendous cost.

This would be a great place to insert the usual point/counter-point arguments, but that’s not where I want to lead the discussion today. This isn’t about politics; it’s personal.

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Why I take health care reform personally — and you should too

Photo: http://www.sxc.hu/photo/1039786

Multiple sclerosis is the ultimate player. First you see it, then you don’t. If you are confused about MS, you are far from alone.

First, what it is not: multiple sclerosis is not the same as muscular dystrophy or cerebral palsy. All people with MS are not in wheelchairs. It’s not a psychological problem.

So what is it?

MS is a neurological disease in which lesions form in the central nervous system, interrupting the transmission of signals to the rest of the body…

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11 Basics to Understanding Multiple Sclerosis

Sometimes, every second counts.

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

Find out HERE

Jake offers advice for the MS Caregiver:

Here’s the truth as I see it. Once you become a caregiver to someone with MS, life will never again be as it was before the diagnosis. The faster you accept that as fact, the better off you’ll be and the quicker you’ll be able to move forward with our new goal of pretend normalcy. Whenever Mandy and I start down the road of wondering aloud about what our lives might have been like without MS, one of us will eventually look at the other and utter an oft-heard phrase: “It is what it is.”

Life doesn’t come with guarantees. No guarantee of happiness, no guarantee of financial security, no guarantee that you’ll have a big happy family, no guarantee of anything — except for one thing. That your life will be full of unexpected and unexplained events. You can tell yourself that there’s some grand plan, that things happen for a reason, but I’ve dismissed that line of thinking. We’ve given up all pretense of believing that some master plan simply called for Mandy to contract MS. To me, life is like running across an active battlefield with your eyes open, senses on fire, every ounce of your life’s training and experience being pulled into use. With all that going for you, sometimes you’re just going to get hit.

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New to the Game?

The financial impact of multiple sclerosis cannot be overstated, whether you have medical insurance coverage or not, it becomes a large part of your struggle with the disease. Like it or not, MS and money are go hand in hand.

So what if you find yourself among our country’s nearly 50 million uninsured? Continue to research and pursue all insurance options. In the meantime, there are other resources available to the uninsured, but it’s going to take some time and a great deal of persistence.

Having MS and no insurance — or inadequate insurance — is a bitter pill to swallow. I cannot in good conscience say that you will be able to access all the services you need. We just have do the best we can with the resources at our disposal. And by all means, contact your representatives in congress. Put a human face on the state of health care!

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Guide for Uninsured Multiple Sclerosis Patients

Knowledge is the single most important weapon you will ever have in your MS-fighting arsenal. It is the one thing you can and should pursue immediately, whether the diagnosis is official or just suspected.

MS is as individual as each patient, with a seemingly endless list of symptoms. Nothing about it is cut and dry, so each patient must actively pursue a course of education and research. Each patient must make a series of decisions about treatment options, medical insurance, and lifestyle. It is never too soon to begin that process.

There are other things you can do if you’re still waiting for diagnosis…

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Early Intervention in Multiple Sclerosis: Knowledge is Power

We’re walking for the National Multiple Sclerosis Society on April 18. Find out Why We Walk

Visit Ann’s Personal MS Walk Page

Visit Jim’s

By all accounts, the number of people with MS who smoke is fairly high. Speaking for myself, always a non-smoker, I find life with MS to be quite a challenge in its own right. I’m also aware that having MS does not protect me from other diseases. It is my responsibility to protect my own health from preventable illness. Smoking is like issuing an open invitation to trouble.

We’ve known for decades that smoking is harmful to health, but young people continue to be lured in by peer pressure and advertising. Health is much more fragile than we like to admit. Taking it for granted is a serious mistake.

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MS and Smoking: Not a Good Match

MS Maze is pleased to announce that our feed has been added to Alltop — the famous online magazine rack of popular topics. You’ll find us under “All the top Multiple Sclerosis news” section.

You’ll find a few other familiar MS bloggers there, including our good friend Lisa Emrich, of Brass and Ivory.

Alltop.com provides links to news and information on pretty much every topic from A to Z, with story updates every hour. We’re thrilled to be included.

If you’re not familiar with Alltop, now’s the time to click on over…  Alltop.com

Happy New Year

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MS Maze

Merry Christmas!

from

MS Maze

Do you trust your doctor to tell you the truth? Do you feel confident that you will be informed about your health status, and all available options? If your answer is yes, you might want to reconsider.

The outgoing Bush administration has granted new protections for health care workers, allowing them the right to refuse to provide patient care… or even referrals… based solely on moral or ethical objections. These sweeping protections are extended to doctors’ offices, pharmacies, hospitals, insurers, medical and nursing schools, diagnostic labs, nursing homes, and state governments. Workers involved in the preparation and cleanup of medical procedures and doctors’ front office staff are also covered under the new rule.

Called the “right of conscience” rule, it promises to increase already high tensions between patients and health care workers.

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Protection for Health Care Workers… at Patient Expense?

As thoughts turn to resolutions for the new year, take the time to consider the little things which can make life easier. Don’t hesitate to take the steps necessary to improve your quality of life. Remember, doing what is necessary to keep yourself independent will allow you to be LESS disabled.

1 – The Many Charms of a Folding Cane

Do yourself a big favor and purchase at least one folding cane. You can find them in many drug and health supply stores or purchase them on line. They are available at very reasonable prices and in a variety of styles and colors.

Lightweight and easy to fold within seconds to fit in a large purse or tote bag, this handy helper will earn its keep. Store one in your car, your spouse’s car, your place of business, your best friend’s house or wherever you might find yourself suddenly needing a little support. The cane will be there when you need it and easily stored away when you don’t.

When traveling by airplane, they can fit in the seat pocket or overhead bin quite easily. If you don’t need it on travel day, just tuck it away in your suitcase.

The first time I decided to purchase a cane, I was searching for something plain and inconspicuous until my husband said, “If you’re going to use a cane, USE A CANE!” He sure had the right idea. I now have a collection of canes in different colors and styles to suit my mood or outfit. They’ve actually turned out to be excellent conversation pieces when out in public. Sometimes I get just a glance, sometimes people ask me where I bought it. Sometimes they just ask me why I’m using a cane when I don’t seem to need one. That’s when I know it’s doing it’s job.

2 – Give Yourself a Break with a Shower Chair

Purchase a sturdy shower chair for your tub/shower so that it is available when you need it. You can find them in most drug stores, medical supply stores or online at reasonable prices. A shower chair can make all the difference in the world when you have trouble standing or difficulty with balance. It can be easily stored away or moved aside when not needed.

Give yourself a break and equip your bathroom with grab bars as well. By taking steps to ensure your own safety and well-being you can avoid accidents and injuries. A little pre-planning can keep you independent, and ultimately, you will feel better about yourself.

3 – Get a Handicapped Placard for Your Car

Apply for a handicapped placard for your car. You can download and print the application directly from the Department of Motor Vehicles site in your state, and they are valid throughout all fifty states. Each state has its own regulations, so check it out online or by phone before taking a trip to the DMV.

A physician’s signature will be required. Ask your doctor to sign for a permanent placard. In my state, Virginia, I was able to choose either a handicapped license plate for my car, or the placard which is placed on the rear view mirror. Choosing the placard will enable you to take it with you when you are a passenger in someone else’s vehicle or when traveling out-of-state.

A personal pet peeve of mine is seeing these placards hanging on the rear view mirror while the car is on the road. Please, please, please, remove the placard when driving and keep your view open! You only need to hang it when parking. Also, please don’t lend it out to others. It’s just not right — and it’s against the law.

On another personal note, I choose to use mine only when necessary. When I’m in a remission, I save the treasured handicapped spaces for those who really need them and get myself some much needed exercise in the process. It’s a win, win situation.

When you do need it, however, don’t hesitate to use it. You may feel conspicuous getting out of your car and walking, while appearing to be perfectly healthy to others. Don’t let it bother you. YOU know you need it and only you know what a huge difference it is making in your day. It’s another tool at your disposal to help keep you independent.

4 – Keep a Tall Kitchen Stool Handy

Legs giving you trouble while working in the kitchen? Keep a tall kitchen stool handy. You can sit at a comfortable height while chopping vegetables, keeping an eye on the stove or doing the dishes. Get in the habit of gathering together everything you’ll need in one spot rather than making multiple trips around the kitchen. Grab the stool, have a seat and enjoy your kitchen again. When not in use the stool can be easily put aside.

This is the first adjustment I made after MS entered my and life it’s made a world of difference. Nothing fancy required. Any tall stool will do.

5 – No Slip Slippers

One of the best and most inexpensive investments I’ve made to make life with MS easier is buying the right kind of slippers.

I experimented for awhile and finally ended up with, and highly recommend, Isotoner Ballerina Slippers.

These slippers stay on my feet — no flopping off, no falling out, no fear of tripping. They weigh next to nothing, so during exacerbations, I’m still as light on my feet as possible and the no-skid soles keep me from sliding. The cost is around $18.00.

I must admit that prior to purchasing the Isotoners, I tried a cheaper, knock off brand, and was very disappointed in the quality and fit and it wasn’t long before they ended up in the trash.The Isotoners brand makes a similar product for men without the “ballerina” looks.

6 – PenAgain

My husband came across an interesting item while shopping and could not bring himself to wait until Christmas to present it to me.

It is called “PenAgain”. What an amazing device! This pen will instantly improve your control and allow you to write legibly again. An odd looking device with an ergonomic design, it will alleviate the need to grip.

If you have difficulty writing for any reason you owe it to yourself to give PenAgain a try. Available in metal or plastic and a variety of colors, PenAgain can be found in many retail stores or online.
Don’t let your pride stand in your way. Take charge and work through the maze that is multiple sclerosis!

(This item was originally posted on MS Maze in December 2007)

When reminiscing about holidays past, I can still see the delight on my children’s faces as they unwrapped a much-wanted gift, or the funny little rubber goldfish my toddler proudly presented me with one year. I still have that treasured goldfish. One cold Christmas morning in Chicago, twenty-three years ago, I celebrated with my one-week old son, dressed in red Santa footsie pajamas. I don’t need a photo or a video to see every detail.

On snowy New England Christmases of long ago, I remember my late father making egg nog with that green Hamilton Beach electric mixer of his, and the orange we kids always found at the foot of our Christmas stockings. I smile when I recall that we didn’t have fancy Christmas stockings. We used the socks we wore. One year I hung up my tights in the hope of doubling my loot. It didn’t work, but it got some laughs. Play-Doh and Etch-a-Sketch. Ham and turkey. Chocolate Kisses and candy canes.

What I don’t remember is whether or not there was dust on the furniture or if the floor was shiny. I don’t remember the state of the laundry room. I don’t have any memories of crushing disappointment because that extra side dish wasn’t on the table. I don’t recall the gifts I didn’t receive or packages that weren’t wrapped just right. I never look back on poor housekeeping on my mother’s part, or my own. I don’t remember any great disaster because someone took a nap or needed a rest.

The memories we carry with us have to do with the simplest things in life. Smiles and hugs. Kind gestures. Breaking bread with loved ones. Some years loss, grief and difficult times will join us at the holidays. Still, we can take away small moments of joy.

Those of us who have a medical condition must be careful not to let that overshadow those tiny treasures, those moments we can cherish for a lifetime. Don’t put pressure on yourself to pull off the perfect holiday. Don’t take on more than you can handle. The best moments will be the ones you can’t plan for. The memories come from something as simple as an orange at the bottom of your stocking.

(This item was originally posted on MS Maze in December 2007)

“I remained frozen in place, working half-days and becoming best friends with my television. I didn’t recognize the reflection staring back at me in the mirror. I didn’t know what the heck I was supposed to do with this new body that refused direct orders from my brain! The body was in all out mutiny and the mind in utter turmoil.”

That was me after my diagnosis of MS. Find out how I pulled it together at In The Trenches Productions’ blog Women Over 40 Rock! …

Read:  How Multiple Sclerosis Unearthed My Passion