MS: Health and Wellness

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“Critical for MS Management and Control”

It’s the new buzz phrase for multiple sclerosis. And it’s about time it’s getting attention.

But will it get the proper messages and info out about what MS “Health and Wellness” actually is? I’ve seen the words “Diet” “Exercise” and “Emotions” as the main categories for the new Health and Wellness strategy for helping to manage MS. But there are a lot of sub-categories under each of these groups, and there is much more to Health and Wellness than just these groups.

I wrote my book three years ago (Managing MS: Straight Talk…) and listed “My Ten Commandments” as my primary way of handling my MS. Guess what? It’s about the health and wellness ways I follow to not only manage my MS, but also to control the progression of it.

t’s the other side of that coin for MS management strategies—non-medicinal vs. medicinal. A side that has been neglected or not addressed for years.

Here’s the goal for MSers: Until a cure is discovered, or restorative abilities to damaged areas are found, it is paramount that a person with MS lives with their primary goal to prevent as much damage to the nervous system as possible.

HOW DO WE DO THAT?

We know that MS is an autoimmune disease, and when our body is under attack by something like sickness, infection, physical or emotional injury, etc., our immune system’s army of fighter cells screw up on their job and attack our brain, spinal cord, and optic nerves instead of the foreign invaders. Attacks lead to inflammation, relapses, lesions, damage and so on.

• Major attention has to focus on keeping our immune system CALM. Good, conscientious health and wellness will keep the body’s resistance strong against those culprits that trigger activation of the immune system. Develop habits to prevent sickness, infection, injury and chronic stress. For circumstances beyond our control (e.g. a death, a catastrophe…) reach out to get as much help and support as possible.

There are many dimensions of health/wellness that include but are not limited to:

**Physical Wellness: such as sleeping, eating, and exercising properly; watching your   weight; avoiding the use of tobacco, drugs, and excessive alcohol consumption.

**Social Wellness: having healthy, positive interpersonal relationships with family, friends, pets and others.

**Spiritual Wellness: finding meaning and purpose in life. This may or may not include religion.

**Emotional Wellness: understanding our feelings and emotions and knowing action plans to follow when needed

**Intellectual Wellness: maintaining cognitive stimulation to prevent mental stagnation. It is a lifelong process of mental challenges and creativity.

All DMTs (Disease Modifying Treatments) work by suppressing, or altering, the activity of the immune system. These therapies are based on the theory that MS is, at least in part, a result of an abnormal response of the body’s immune system that causes it to attack the myelin surrounding nerves. Corticosteroids used to treat relapses also suppress the immune system.

What does this mean? When the immune system is suppressed, the body is more susceptible to infections and illness, and thus relapses. Therefore, it is imperative that all good health and wellness habits be followed. For example, if you take Solumedrol, avoid people with colds and viruses. At the first sign of a UTI infection, get on an antibiotic. You can take care of your health so that your immune system isn’t ‘triggered’ to act due to illness, etc.

• One must think of health and wellness both in the short and long term. After all, there is no cure yet and nobody knows if/when that will happen. We have one body, and we need to protect it, be proactive, and make prudent choices. For example, every drug that is taken has to be processed through the liver; what are the risks vs. benefits of any drug we take regularly after 10, 20, 30 or 40 years?

Everyone has their own stories and experiences with MS. Here’s mine:

In 1980 when my first major attack happened, I was only 25. Since there was scant literature about MS, it took a awhile to understand the disease and figure out what to do. I finally learned proper health and wellness for MS that I followed for decades and am still learning as new things emerge.

Flash forward 34 years. I just turned sixty. I never took a DMT, had only two MRI’s, quit smoking in 1987 and having been swimming 3x/week for thirty years. I weigh 115 lbs., and have perfect scores on all my tests: blood pressure, cholesterol, pulse, circulation, Vitamin D and all the other things that are measured when blood is checked. Although I have been self-cathing for 28 years, both my bladder and kidneys are as good as a “normal” person’s due to good neurogenic bladder management. Meds are taken for spasticity, depression, and bladder regularly, and for sleeping/anxiety as needed. I practice yoga, deep breathing and stretching for pain and stress. Tutoring Spanish for years and reading/researching technical data surely help my cognitive function.

Yes, I am the one in four who ended up in a wheelchair, but the strength and agility in my upper body and trunk enable me to do many things independently, including driving.

Is it easy? Quite frankly, no. It takes a tremendous amount of discipline, determination, and control. And now that I am starting my seventh decade of life, I am slowing down.

But I know two things. First, if I didn’t practice good health and wellness, my MS would be so much worse. Second, if/when that breakthrough for remyelination or a cure arrives, I’m in great shape for it.

www.DebbieMS.com
Author/ MS Counselor/Living with MS

 

*Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

 

 

 

Using Mobility Scooters and Other Assistive Devices

“Move Forward–not Backward or Not at All!”

One of the National MS Society’s famous phrases is “MS stops people from moving”. Not me! MS may have stopped my legs from moving but it didn’t stop me from moving. And it shouldn’t stop you either.

I never hesitated to use any assistive device and actually sought them out on my own. This is what I say:

Goodbye fatigue and mobility problems. Hello freedom and happiness!

Recently I mentioned to a person with MS that I was getting ready to go do some leisurely shopping at the Mall. She said, “I am so envious that you can go shopping in this heat.” I told her it was time to think about using a scooter. Buy one, rent one, or borrow one.

Through the years, assistive devices have allowed me to be less fatigued, elevating my moods and enabling me to do more. I didn’t overheat as fast since I struggled less in trying to walk. Since I was walking better using the devises, I experienced less muscle and bone stress on my body parts.

Twenty-five years ago when my son was only four years old, I got my first scooter (insurance covered 80% of it). I was still able to walk, but only for short distances. Wanting to keep active, live life and enjoy my son, the scooter enabled me to go to zoos, amusement parks, Disneyworld, shopping malls, etc.

Goodbye danger. Hello safety.

Weakness, poor balance, fatigue, incoordination, foot drop, spasticity…. These symptoms increase your probability of falling and suffering an injury—risking a flare-up and residual damage. Not to mention the pain and inconvenience while you heal if you fall.

Goodbye pride. Hello common sense.

Most people at some in their lives have to use corrective lenses for their vision problems. They don’t think twice about getting them. Eyeglasses are so fashionable these days, and people love the styles and colors available. Others prefer contact lenses instead of glasses for personal reasons; plus, it gives them the ability to have several pair of designer sunglasses to wear.

So what’s the difference if you need to use a device for mobility? In the days when I started using a cane, I had four of them in different colors and styles to match my outfits.

In addition, in today’s world, the stigma of using wheelchairs is going away. The attitude and awareness about using medical devices has changed since the eighties when I first had to use them. People of all ages are often seen in movies and advertising brochures using a wheelchair. You see more people out and about using them. Grocery and retail stores like Target or WalMart have scooters available now for their customers to use. Many places like amusement parks rent wheelchairs and scooters.

Besides, who cares what people think? I do what is best for me. Sometimes I just look at the way people dress, look, and act today….and I should worry about how they look at me?!

And added bonus? People—family and strangers alike—treated me differently when I started using a mobility devise. I looked disabled and received many more offers for help!

A word of caution, however. When you find how relieving it is to use a scooter or wheelchair, never stop your exercise regime. The old saying that “if you don’t use it, you will lose it” has truth to it. I’m a full-time power chair/scooter user, but I still do my daily stretching, balance and strengthening exercises. I use a pool regularly to practice standing and walking—things that I can’t do on land.

So technically, the Society’s phrase is correct in the sense that MS does stop people from moving in the physical sense. But MS shouldn’t stop people from moving forward in life. If you look hard enough, there is a solution to almost everything.

P.S. See my video “Mobility Scooters: Tips on How to Buy” http://youtu.be/TfLtgb2ybb8

www.DebbieMS.com

Electric Scooter/Wheelchair Safety

“Enjoy the Ride, but Use Precautions.”
March 19, 2012

For those of us with walking problems, using an electric scooter or wheelchair is liberating. What an invention! I started using a scooter only four years after I was diagnosed with MS. My poor balance and leg weakness limited my walking time to about one-half hour. Lucky for me, the electric scooter was a new device at that time.
That was twenty-five years ago. I know more about buying and using scooters than I know about cars. I had my scooters everywhere from climbing up the Mayan ruins at Tulum, Mexico to driving down the trails at Mesa Verde National Park in Colorado. I used to do wheelies on them. I drive them everywhere, every day on dirt, gravel, grass and pavement hauling groceries home and clipping bushes. So I am really good at operating them.

But I became too confident. I was flying down the street last week walking my 70-lb. dog when I navigated the curb-cut wrong. Over I went, wiping out right onto the street. The scooter pinned me to street, and I laid there for five minutes before a neighbor and two guys in trucks stopped and picked me up.

Fortunately I didn’t get hurt, but that was a wakeup call for me to be careful and not take risks. I should have known better after all these years.

When I was lying on the ground waiting for help to arrive, I thought how lucky I was that it was March and not August. I live in the desert. Last year, a local woman on a scooter wasn’t paying attention and drove off a curb. The asphalt that she was laying on was so hot she received third degree burns. That same month, a guy in a power chair accidently drove himself into a swimming pool.

It’s no different than driving and texting; all it takes is one moment off guard. So safety rule #1 is to pay attention and watch out for yourself at all times.

Safety rule #2 is to watch out for other people, especially kids. This is a rule new drivers or part-time time chair users forget about because they are trying to concentrate on their own driving skills.

Many people are so busy doing their own thing they are not looking out for you. I can’t even begin to count the times people walked into me. I yell, beep my horn, or make a last-ditch effort to maneuver out of their way but it still happens. It doesn’t matter if I am in a parked position or riding slowly going with the flow of people traffic. It will still happen.

If I am in a store turning into another aisle, I creep slowly and stick my head around the corner before I proceed on. A collision with a person or another scooter can be embarrassing or anger someone but, the more important issue is to avoid somebody getting hurt.

I avoid very crowded events or stores when I can, because I am so occupied trying to drive carefully and dodge others I can’t enjoy myself. Sometimes during holiday seasons, merchandise in stores is packed too closely together. Managers need to be alerted to this. Once, the cane holder on the back of my scooter caught onto a security chain of a rack of expensive furs and the entire rack tumbled down. Oh well…

The next rule is when you are at an intersection, crossing a street, parking lot, etc., always make eye contact before you proceed—with everyone around you. It doesn’t matter whether you have the right-of-way or not. It’s called defense driving in driving school. This sounds so common sense that someone reading this may scoff at what I am writing. But again, so many people on the road are not paying attention.

If you get caught in the rain while out on your electric mobility unit, make sure the controls do not get wet. It could cause a malfunction. In my case when this happened, instead of my scooter ‘konking’ out, the panel froze and I couldn’t get the scooter to stop. If you are out on a day that looks like rain, carry a plastic bag to cover the controls until you get under cover.

When I order either a new scooter or electric wheelchair, I make sure I get solid tires. Although pneumatic tires will give a smoother ride, getting a flat tire is no fun. For full-time electric chair/scooter users, this equipment is our legs; a flat tire means no mobility until it’s fixed.

Sadly, there are many thieves in this world, and those of us in wheelchairs are easy targets. Besides a cell phone, I carry only a hidden credit card and no cash. If I am out some place where I need a purse, I loop the handle around the tiller of the scooter and am careful about what is contained my purse.

People feel differently about methods of self defense, but when I am walking the dog in the neighborhood, I carry a billy club and hornet spray. Occasionally there are stray dogs and coyotes that roam. Though I’ve never come close enough to a roaming animal to use one of them, it’s reassuring to know that I have something to quickly grab and protect myself and my dog if the need arises.

Finally, annual maintenance checks on equipment are a must. It’s the same principle as when a car is owned. Prevent a problem before it happens to alleviate the possibility of getting stuck or broken down.

Happy trails to you!