Happy New Year

from

MS Maze

Major health care reform will begin in 2009! It has to.

As we welcome in the new year, the inevitable “premium explanation” notices have arrived in our mailbox and the news is not good. Two middle-aged people on individual insurance policies, one with multiple sclerosis… you can just imagine the grim result.Increased premiums, outrageous deductibles, and “tier 4” medication may force us to make some very difficult choices in 2009. Choices with far-reaching consequences.

For people like us, and perhaps you, the need for major health care reform has grown urgent.It is unconscionable that our health care system punishes people who have the misfortune of having a chronic illness like multiple sclerosis.

Read this post in its entirety:

2009: Ushering in Health Care Reform

Merry Christmas!

from

MS Maze

I’ve got a case of the wonders. Multiple sclerosis is an elusive force, but with a powerful impact on daily living, it is rife with unknowns.

I wonder

… if, when I’m doing particularly well, people think I’m faking it at other times. In their shoes, what might I think?

… if, when I think I’m hiding my symptoms, I’m only fooling myself. For that matter, I wonder why I try to hide my symptoms.

Read this post in its entirety:

Multiple Sclerosis: Wonder of Wonders

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.

Read this post in its entirety:

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)

The holiday season is upon us. For many, the lights are not quite so bright as in years past. Parents wrap gifts for the kids, emotions contained amidst a continuous flood of depressing economic news heaped upon them by the media. 401K statements, which were once greeted with anticipatory grins as envelopes were torn open are now things to be avoided. Bad news can wait another day.

Setting aside the blatant financial incompetence demonstrated by banking and investment professionals, my concern as it relates to caregivers and those in our charge has to do more with health care and, most importantly, health insurance. In a nutshell, it stands to reason that we’re going to see a sharp increase in the number of families unable to find and/or afford health insurance.

Read this post in its entirety:

Cratchet, your fired! by Jake Crest

Christmas is coming! Christmas is coming!

Does the thought of Christmas fill you with joy or does it send you scurrying under the bed in a fit of angst?

If you have multiple sclerosis and associate Christmas with errands, chores, and great expectations, now is the time to get off that crazy merry-go-round and make the switch over to realistic expectations.

I’m not suggesting that we give in to MS, but that we make our peace with it.

Read: Realistic Expectations for Christmas

What if doctors discovered that you have a precursor to multiple sclerosis… would you want to be told? If so, what would you do with this information?

Advances in medical science are testing our boundaries in ways never before imagined. How far into the future do we want to see, and what if we are wrong? With our health care system in crisis, who among us would want to have the possibility of future illness or disability on our medical records?

Read:   Precursor to MS… Too Much Information?

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

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Headache is not usually considered a symptom of MS, but as researchers continue to search for clues into the cause of multiple sclerosis, every piece of the puzzle is important. Migraine, like multiple sclerosis, is a neurological disease. That these two conditions, both affecting more women than men, could somehow be linked is an avenue that must be pursued. Clues into either disorder could lead to important advances for both.

Do you suffer from both chronic headaches and multiple sclerosis? Please share your story here.

Read: The Multiple Sclerosis/Migraine Connection

The Health Central Network’s MultipleSclerosisCentral.com has a new feature page addressing the topic of health care and insurance.

Confused about COBRA? Concerned about health care? Visit “Health Care and Insurance” to get up close and personal with MS patients and doctors, and their fight for health care reform.

Health Care and Insurance

The issue of optimism and keeping a positive state of mind comes up often in discussions of multiple sclerosis, and it always makes me cringe. Gives me a knot right in my stomach.

I have a very positive attitude about my MS, but I am also a realist. I am not prone to flights of fancy that I can control this disease through positive thoughts. I do believe that my positive thinking makes living with MS more tolerable by a long shot.

Somehow, I seldom manage to make my point. Well-intentioned people continue to barrage me and other MS patients with positive thinking theories, not realizing the burden they place on us. Are we to feel responsible for our bad days… for our relapses? Is this thing called MS merely a state of mind? Must we be riddled with thoughts of guilt and inadequacy in addition to MS?  I think not.

Read: Optimism and Realism… In Perfect Balance