New Release!

Managing MS
A Roadmap to Navigate Multiple Sclerosis

It’s done! The second edition of my book Managing MS is out, and I would love for you to read it. This edition is updated and enhanced—it’s amazing how much has changed and happened in ten years.

As in the past, my mission is to continue educating anyone dealing with MS in an easy, uncomplicated way. In addition to the apparent walking difficulties associated with MS, most people aren’t aware of the numerous invisible symptoms and stigmas that are part of the disorder. “What to know, what to do”, is all in one place.

This second edition has more information, resources and links for readers to reference throughout the book. People acquainted with an MSer will learn how to help them. Read what my friend Dave Bexfield, founder of www.ActiveMSers.org has to say:

“Debbie Petrina has managed to improve her no-nonsense, been-there-done-that guide to navigating the often, choppy waters of multiple sclerosis. For personal advice without the unnecessary puffery, it’s just what the doc ordered.

If interested in a copy, here’s the link:  http://debbiems.com/orders_275.html  If you like it, please write a review on Amazon. or wherever you bought it. And then, spread the word to help others understand multiple sclerosis!

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

The Truth about MS and Wheelchairs

“My Personal Insights”

If you asked anyone “What do you think of when you hear the term MS?” the answer usually includes “wheelchairs.”

When my first relapse happened back in 1980, a picture of a person with MS in a wheelchair was always shown, even by the MS Society. Perhaps it was to help with fundraising, or perhaps it was to a way to draw attention to a disease that was not usually heard of.

Whatever the case, it did create a picture of “this is MS” and the huge fear of living a life in a wheelchair. That vision still exists today, despite the advances in awareness and research that have occurred. Despite the reality that MS involves many other neurological symptoms in addition to a life in a wheelchair.

I know much about this because I am one of those MSers who ended up in a wheelchair. And I want to speak up about MS and wheelchairs to try to correct that picture and reduce that fear for anyone dealing with MS.

1. Over a lifetime, only 20-25% end up in a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.

I have many friends who have had MS over 30 years, and I am the one of a few who is in a wheelchair permanently. Now, of course many patients use walkers or canes since MS and mobility problems usually go hand-in-hand, but few are not hunched over paralyzed, completely debilitated in a wheelchair.

2. A person can have a quality life living in a wheelchair, though admittedly the limitations it causes can be frustrating. Again, I know.

I manage my MS well and despite having lived permanently in a wheelchair these past thirteen years, I have had a happy life. I travel, swim, volunteer, take care of many household responsibilities… And the other MSers I know who are in my position would agree their lives are full and active.

Having MS certainly is not a cakewalk, but it certainly isn’t the end of the world either. There are far worse things in life. Plus, I must add that there are other MS symptoms that can be difficult, such as vision loss and overwhelming fatigue. However, so many of these symptoms can be successfully managed to minimize their interfering effects.

3. Wheelchairs should be viewed as a friend, not the enemy. So, you ask, what the heck does THAT mean? I’ll explain.

At many MS events and online, I see and hear people with mobility issues struggling with trying to walk without a walking aid, or one that is not suitable for them. Part of it is due to vanity, or part of it is a desire to not “give in” to MS.

• Is vanity worth the risk of falling down and getting hurt? In truth, I purposely started using a wheelchair full-time even though I could walk with a walker for 15-30 steps. The years on steroids, the osteoporosis, and my age put me at great risk for breaking an arm or leg. Instead, I used the swimming pool to walk and exercise safely.

• Before I went into the chair permanently, I used a power chair on a part-time basis around the house and scooters that were available in stores for customers. It is a tremendous help in reducing fatigue and getting more things done. This was a great morale booster. In addition, the pain from overused muscles and poor posture was lessoned substantially.

I wasn’t giving into my MS at all. There are many persons with MS that will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.

4. The majority of people with MS do not become severely disabled. Three out of four people who have MS remain able to walk, though many will need an aid, such as a cane or crutches.*

Before I decided to post this article, I talked to a couple of good friends of mine to ask them about the content of this article. They, like me, are the “Ol’ MS Vets”, i.e. who have lived with MS for decades and also have been involved with the MS community for the same amount of time. We know this disease because we have lived with it and been continuously involved with its research. 

We are a reliable resource you can trust.

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

*Note: This statistic is listed in many reputable resources. The Nat’l MS Society used to use this percentage until several years ago, but changed it to 35% based on some study. I question their revision, as well as the study, because with the numerous DMDs that have been/are available, the percentage of MSers in wheelchairs permanently should have declined, not increased.

Unsteady Gait: Time for a Cane?

“Thoughts and Choices”


April 9, 2014

Many people with MS will begin to experience walking problems due to emerging symptoms like balance, coordination, fatigue and weakness. The typical first type of walking aid is a cane.

The thought of using a cane can be difficult. Some believe they are “giving in” to MS. Others think it makes them feel or look old. Or, that a cane makes one “stick out” and draws attention to them.

People who think this way need a positive perspective, from somebody who has “been in their shoes.” Using a cane:

• Is accepting MS and its gait problems, not giving into it.
• Helps keep you walking, reducing fatigue and improving posture.
• Is a safety net against falls and injuries.
• Draws no more attention to you than a wobbly gait or drunk-like walk.
• Transfers an “invisible” symptom into “visible” one. (A BIG benefit for MSers!)
• Can actually give you a classy, distinguished look!

We use eyeglasses to help us see, so why not use canes to help us walk? When I began using a cane at the age of thirty, I learned all of these things. At that time 28 years ago, I was able to find four different kinds of canes to match my outfits and walk with style.

Now there is a terrific website called Walking Canes http://www.walking-canes.net/multiplesclerosisandgait.html . There are oodles of styles, colors, types and accessories to choose from. This site also has an MS Guide, researched and written by Dr. Elizabeth Lewis, a well-respected and experienced physician.

So check it out, and also check out a previous post I wrote entitled “MS and Walking Problems” http://debbiepetrina.authorsxpress.com/?p=122 .

A final note: If this is your first cane purchase, it is important you talk with a physical therapist or qualified health professional to show you how to properly walk with a cane and how it should be adjusted to fit your physique.

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

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

MS and Walking Problems

“Falling Down”

May 7, 2012

Most people with MS will fall down.  As careful as you try to be, it happens when
you least expect it.

I fell down two weeks ago and I am still recovering.  As I was getting up from my recliner, my knees suddenly buckled and I landed right on my tailbone.  It was probably a good thing that my back hit the end table as I fell.  I think it helped break the fall of dead weight hitting the floor and possibly preventing a broken bone.

Who knows?  I may have a slight fracture because my butt still hurts when I sit, but it is slowly getting better.  I held off from going to the doctor because the thought of X-rays and who knows what else a hospital would do was not something I wanted to deal with.  I didn’t want the added stress of all that added to the stress of the fall, plus all the germs I would be exposed to at the hospital.

I didn’t know if that was a smart decision at the time, but after the fact, in my own mind it was. The truth is, if I had been in severe pain or exceptionally immobile in a new way, I would have gone for a medical evaluation immediately or a day or two later.

There are so many symptoms of MS that make walking precarious, and it is probable that almost all people with MS have at least one of them.  Fatigue.  Dragging feet.  Weakness. Ataxia.  Toe or foot drop.  Poor coordination and balance.  Spasticity.
Vertigo. Medications, lack of sleep, and age also affect walking safely.

We need those handrails on steps.  We love hanging onto those shopping buggies
in stores.  Thank goodness for all those walls and furniture to hold onto.

With my own case of MS, I had walking problems from the onset.  I was very young and the walls and buggies sufficed for a few years.  Then things started getting worse. I bought a collapsible cane and carried it in my briefcase everyday, but never used
it.  Until one day when I was crossing a cobblestone street and I wiped out.

That’s the day I took out the cane—I was thirty-years old and started using it for my poor balance. I was too startled and scared to be embarrassed.  After that day, I never hesitated to use that or any other assistive device.  It didn’t take much to fall down:  a crack in a sidewalk, a toe getting caught in a throw rug, or a shoe heel that was too
high.

I thought of my cane as a pair of glasses that one uses to see better.  So I bought four canes in various colors and styles to match my outfits. Later, the walker-on-wheels with the built-in seat to rest on was a blessing when the weakness and fatigue would cause my legs to crumple after walking a short distance.  The added benefit of the basket to carry my things for me was so convenient.

We MSers need to think about tripping and falling constantly—something “normal” people take for granted.

Falling down is dangerous to us for several reasons.  Obviously, serious injuries can result.  Serious injuries not only impair daily living, they cause enormous stress and often cause a relapse.  Relapses lead to intensifying existing MS and creating new ones from residual damage. Injuries take longer for people with MS to heal because of the autoimmune response of our nervous system.

Steroids (such as Solu-medrol) are frequently prescribed to reduce inflammation and shorten the life of a relapse.  Most people on steroids suffer side effects and over time these cause loss of bone density.

Therefore, the older you are, the more dangerous it is to fall down. Not only are older people prone to fractures because of bone loss from things like menopause and osteoporosis, but those who lived a long life with MS probably used steroids frequently throughout the years to shorten their relapses.  Being fifty-seven years old, I was lucky I didn’t break a bone when I fell.

There is a whole arsenal of tools available to help prevent falling down–physical therapy, walking devices, strengthening/balance exercises, arranging daily habits to enable frequent resting…too many to talk about in this article. I’ve explored and use(d) so many of them and am always looking for new things out there to try.

Where to start?  Go to a physical therapist who has worked with MS patients and talk to other MSers. It is essential to learn how to do and use things correctly.

These things take time, dedication and will power to adjust to lifestyle changes.  They create more interference in our daily life and add more to do and worry about.  But the chance of suffering a serious injury doesn’t fit in with working full-time, being a spouse/parent, running a household or enjoying life either (sigh).

We with MS have to take every precaution we can from falling down.  Our lives (and our butts!) depend on it.

www.DebbieMS.com

 

 

 

 

Optimizing Battery Life for Electric Wheelchairs/Scooters

April 9, 2012

Are you getting at least three years life from your 12-volt gel batteries?

You should be.  It’s bad enough that power chairs and electric scooters are so expensive, but when you have to start replacing parts to keep them running the costs can be outrageous.  A 12-volt battery costs from approximately $80-100, and most mobility devices need two batteries.

Here are some tips to maximize the life of your batteries, especially scooters since these often are not used everyday like most power-chair users.

  • Every time you use your scooter, charge it.
  • If you are a part-time user, take it for a ride around the block a few times at
    least once a week. Then charge it completely.
  • At least once a month, let the batteries go into “deep cycle”.  This means run the batteries for as much distance as possible before they run out of ‘juice”.  Then charge them completely.
  • Store your equipment indoors if possible. Extremely cold temperatures in the winter or heat in the summer will not only reduce the amount of daily charge available, it will shorten the life of the batteries.  I learned this the hard way when I bought my first scooter twenty-five years ago.  I stored it in the garage the first winter when I was living in Pennsylvania, and the batteries lasted only one year (which is a typical warranty on a battery).
  • Sometimes a cell in one battery can go bad, which will put extra drain on the second battery and shorten its life.  If your batteries are less than a year or two old and you notice it starts slowing down, losing capacity or your battery indicator gauge is showing a low charge sooner than you think it should, get the batteries checked out.
  • If your mobility device uses two batteries, never put an old battery with a new
    battery, or replace just one battery.
  • Don’t buy your batteries from a medical supply place—they will scalp you! Go to
    a place such as Battery Outlet. They will also do the replacement for you, but just make sure you watch them. Sadly, many people will try to cheat you nowadays.

How far an electric scooter or wheelchair will travel depends on these things:

1.  If the batteries are charged fully.

2. The age of the batteries. A brand new battery will go much farther than
a three-year old battery. If cared for properly, a battery starts losing
capacity when it is three years old.

3. The combined weight of the person/cargo using the equipment.

4. Whether your equipment uses one or two batteries.  I weigh 125 lbs. and if my two batteries are fully charged and fairly new, I can travel eighteen miles!  My mini-wheelchair uses only one battery and on a full charge can travel about eight miles.

5. The type of terrain you are riding one. Rugged or hilly terrain requires more energy than level, smooth surfaces.

 

 

 

 

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!