Author Archives: DebbieMS

New Beginnings in Life

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“Entering the Unknown”

May 14, 2012

I ran into my neighbor’s son yesterday and he told me that he was graduating from high school.  When I asked him if he was excited about going to the university, he admitted he was nervous.  It is out-of-state and he will know nobody.

The fear of the unknown.

As we journey through our years of life, we have many new beginnings that we will encounter, some big and some small.  Some we choose and some we don’t. Our first day of kindergarten, our first kiss, our first menses.  Our first fender-bender, marriage, house, baby and loss of a job or loved one…. The diagnosis of a disease or serious illness.   At first, we don’t know where to start or what to expect with each of these new beginnings.

Some things turn out easier than expected, and some end up being more difficult.  Many things happen to us that are unpredictable and out of our control.  We need help to figure things out, find it through a variety of means, and most of the time we learn how to manage.

As we proceed, the unknown becomes more known and the fear becomes less fearful.

A huge new beginning in my life was the onset of multiple sclerosis in 1980.  Anyone dealing with MS knows it requires constant learning and adjusting to new obstacles, lifestyles, and goals.  This incurable, complicated, and unpredictable neurological disease is a full-time job with many new beginnings in itself and lots of unknowns to face.

But I learned the ropes in managing it so that I could enjoy life, despite the setbacks.  Along the way I also had to achieve other things in life, such as motherhood, career changes, moving across the country and having to live on my own for three years while in a wheelchair.

Now I am involved with another new beginning. I chose to become an author and write a book.  Recently published, I wrote Managing MS: Straight Talk from a Thirty-One-Year Survivor for the primary goal of helping persons dealing with multiple sclerosis.  I get up close and personal when I share my experiences and expertise from my own life’s journey in this handbook.

Once again, this new frontier to explore has been a big challenge. The world of publishing and marketing books has changed drastically in recent years because of social media.  I’m slowly transforming from a dinosaur to a new chick in this technological arena and it hasn’t been easy.

Though frustrating, I’m not afraid of the unknown anymore.  I will read, experiment, and ask for help when needed in learning how to accomplish my mission.

I so desperately want to succeed, but I’ve also learned to be patient and just do my best.  Life has taught me this, particularly a life living with MS.

www.debbiems.com

 

 

 

 

MS and Walking Problems

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“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

 

 

 

 

What is Multiple Sclerosis (MS)?

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April 30, 2012

“The Misunderstood, Ignored, and Forgotten Disease”

I recently asked the question “How do people without MS react to you?” to an MS discussion group I belong to.  Their responses?  The same I have been hearing for decades:  We feel misunderstood, ignored, and forgotten by so many people.

Why do we feel this way? 

First, on the outside so many of us look good unless we have some kind of walking aid to indicate otherwise.  We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses.  When we look good, people automatically assume that we are good.  I’m in a wheelchair, but I still look good and completely normal.  If I would use a store’s scooter instead of my own, I would get dirty looks.  I’m misunderstood.

But very often we are not good because so many of the symptoms are invisible.  Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless.  These symptoms interfere with everything we think, say or do.  They are annoying; they hurt; they are frustrating; and they make us crabby. For persons with MS that do or do not show visible impairment or walking aids, these symptoms are very disabling.

Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize.   Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

When we see these same people again, they forget that we have these symptoms because they are invisible.  If we talk about them, we sound like complainers.  Unless we complain about these things often, who would know we have these problems or that they continue to plague us?  And who wants a complainer around all the time?

Fatigue is the hallmark symptom of MS.  It is a universal complaint by over 90% of MS victims.  It doesn’t matter if the case is mild or advanced.  It doesn’t matter if one had a good night sleep or if the MS is not currently active. Fatigue is always present with MS, 24/7.  Why?  Fatigue exists because MS is a disease, a chronic illness, that causes other symptoms such is walking problems to intensify.  Constant fatigue leads to our moodiness or depression.  So when somebody suggests we need to get out and take our mind off things, they truly don’t understand why a sofa or bed is more desirable to us.

People without MS are often uncomfortable around us because they don’t know what to say or do.  Or because of our moods or a previous bad experience, they are unsure what kind of a response they will receive.  Others just can’t deal with it perhaps because of personal feelings like guilt. Therefore, it is often easier for them to just ignore it.

So, what can we do about it?

We need to be educators, communicators and advocates to everybody, everywhere—beginning with the basic question and a simplified, clear answer.  Forget the boring textbook medical details.  Something like this:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves.  That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown. It is generally progressive.  That means that because there is no cure, the majority of persons afflicted (2.5+ million worldwide) will become disabled during the decades of their lifetime with no way to fix the damage.  Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take.  What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses continue and the grieving process never ends.

There are treatments available that slow disease progression, and meds to help with relieving symptoms and shortening relapses.  But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects.  However, there are many things one can do to manage it effectively.

Peer-to-peer, we understand it, share our stories and how we cope with MS. We count on our peers, close family/friends and MS organizations for knowledge and support to help us manage it during our lifetime.

But we would like more.  We want everyone to know and understand what MS is about, not just be aware of MS being something that people walk for or bike for.  The more people that UNDERSTAND multiple sclerosis, the less we with MS feel we’ll be misunderstood, ignored, and forgotten.

Let’s all get started now:  hand, send or post this article to everyone you know.  Do it today!

www.debbiems.com

 

How Handicapped Accessible is Your Hotel Room?

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“Let’s Play Show and Tell”

April 17, 2012

I’m permanently in a wheelchair. When I book a hotel room, I ask my usual one hundred questions before I book a room to be sure it is accessible enough to meet my needs.

Though I am always assured that I will get what I asked for, the truth of the matter is I never get a completely handicapped accessible room. There are ADA standards that are supposed to be followed, but these basically address the spacing requirements. More often than not, the everyday decorative or necessary devices—such as lamp switches, bed height, or thermostats–are frequently overlooked.

This is troublesome, especially if I am travelling alone. What do you do to remedy the situation? Over the years I’ve learned something important: The way you approach somebody about a problem often will result in how (or if) that problem will be resolved. I know this is common sense thing, but it is true.

Earlier this year I booked a handicapped room at a hotel after I asked my one hundred questions about the room. Is there a roll-in shower; is the toilet seat raised…? One of the things I specifically asked about was the height of the bed. I know high beds are fashionable these days, but for someone in a wheelchair, this is a problem. I was assured that the bed was a normal height.

When I checked into my room, you guessed it. The bed was very high, and since I was travelling alone, there was no way I was going to be able to get in and out of it myself.

I called the front desk and asked for a manager to please come to my room, who came immediately with an assistant. I nicely demonstrated my dilemma, and asked them to take out the six or eight-inch frame and lower the bed. They did it, and made some other arrangements to the room that I needed such as rearranging furniture/other things so they were within my reach (lamps, phones…) I graciously thanked the manager and she graciously thanked me for being so nice about it, adding that many people are so rude and quick to complain or threaten.

Sure, I could have accused them about ADA standards but what good would it have done at the moment? I got what I wanted, plus three days of exceptional service that followed for anything I needed. Realistically, if I complained to an agency later, nothing would have ever have been done about it.

In the past I have attempted to discuss handicapped accessible room needs to higher level hotel management but needless to say, my single voice got me nowhere.

So, I recently made two videos evaluating two hotel rooms that I stayed in. Here are the links on YouTube: http://youtu.be/kAj4PoZ8MnQ and http://youtu.be/qRQlXXklYnw

Would you review these videos and give me your feedback on them? What do you agree/disagree with; what would you add, or delete?

Strength in being heard intensifies with numbers, and with more voices, maybe this time around someone will listen.

www.debbiems.com

 

Optimizing Battery Life for Electric Wheelchairs/Scooters

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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.

 

 

 

 

Aquatic Therapy for MS and Everyone

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Wha-hoo! My pool is now open for the next seven months.

As soon as the water gets to seventy degrees, it’s time. Now seventy degrees sounds very cold, but when I am constantly moving around it isn’t. Cold temperatures speed up nerve conduction, allowing me more ability to exercise in a variety of ways. However, a person with arthritis or other chronic illness would want the water warmer (84 degrees is ideal).

One of the reasons I moved to Arizona was to have use of my own pool for therapy. I had a hydraulic lift installed so that I could do a good workout in the pool and not worry about getting out when I am done. Insurance covered 80% of my lift, but I had to fight with them to pay for it and finally after three appeals they did.

Exercise is one of the most important things a person with MS can do. Or anyone for that matter.

I have been a swimmer all of my life, and when I developed MS, swimming became my #1 form of exercise. Three times a week, I have religiously gone into the pool to stretch, exercise, and practice things I had/have trouble doing on land (like standing, walking, and balancing). I have done this for thirty years.

I do a 45-minute workout, but if I’m exceptionally tired I don’t push it and five or ten minutes is better than nothing. Beginners will have to start out slowly and work their way up in time and intensity.

The enormous benefits of swimming are:

* Improves circulation; reduces edema.
* Benefits the respiratory and cardiovascular systems.
* All muscles get a workout for stretching, strengthening and endurance.
* Enables excellent practice for things that are difficult to do on land,
such as standing, walking, balancing, and improving posture.
* Provides safety from slipping and falling.
* Exercises in cool water are easier.
* Benefits overall health, constipation.
* Relieves stress/provides relaxation.
* Helps burn calories to keep the weight off.

On days when I’m not in the pool, I get on the floor and do a variety of exercises that I learned from my dancing days, physical therapy and videos.

Before I had my own pool, I used to swim at the YMCA for years. MS Associations have information about aquatic therapy online, and many local chapters offer/arrange aquatic therapy.

People always say that infamous MS saying to me—“You look so good!” I do look good, and even on days when I feel like crap, a little swim does help me feel a little better. You will too!

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

Electric Scooter/Wheelchair Safety

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“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!

Transition from Grief to Acceptance

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Loss word on a 3d person who stands alone from a group or family, mourning the death of a loved one, feeling heartache, sadness, isolation and grief

“I Can’t Dance Anymore”

March 12, 2012

I started dancing when I was three years old, and always loved all types of dancing. My favorite dances though were those of my cultural heritage. My grandparents emigrated from Croatia and Slovenia and so the traditions were instilled in me as early as I can remember.

One of my greatest achievements was when I was accepted into a professional musical ensemble called the Duquesne University Tamburitzans. The longest running stage production in the United States, authentic music, song and dance portrays many Eastern European and neighboring cultures’ traditions. Affiliated with Duquesne University, as an accepted member I was awarded a scholarship while attending college.  See http://www.youtube.com/watch?v=LhItCxgX-hg

My MS symptoms appeared noticeably when I was twenty-five, though in looking back, I can recall having some balance and coordination issues while I was dancing with the ensemble. My aggressive course of MS left me with the inability to do anything but walk slowly by the time I was twenty-eight; there was no more running, hopping, skipping, or dancing.

I was devastated. While I was teaching my one-year old son to walk, I was losing my ability to do so.

I attended a wedding on November 20, 1985. That night, I wrote in my personal journal: “Everyone danced tonight but me. Again. That hurts. I love to dance. I can feel the potential movements in my system that would direct me exactly how I should move, but I can’t do it. I’m so frustrated…”

It took a long time to get through first the anger, and then the sadness and depression. But the brain is a powerful organ, and I worked on my perspective. These were the thoughts I began to think about and focus on:

  •  I was happy that I had the opportunity to grow up with dancing and enjoyed all the years in doing so. So many people do not get that opportunity.
  •   I found other ways to enjoy dance: musicals, Broadway and Civic Light Opera shows, kids’ performances… Though the show “Dancing with the Stars” can be annoying, I find the actual dancing to be incredible.
  •  An acquaintance of mine was a ballerina with the Pittsburgh Ballet. Ballerinas can only perform for a limited amount of years. She opened up a dance studio and has been teaching young girls ballet for years. Athletes are in the same situation; their prime years are limited and then they have to transform their skills into something different.
  •  Most of all, dancing with the D.U.Tambutizans required immense discipline, dedication, concentration and strength. It was those particular attributes that tremendously helped me to survive my MS.

I will be attending the 75th Anniversary Reunion of the Duquesne University Tambutitzans in Pittsburgh, PA during the last weekend in March. I will be visiting my colleagues and long-time friends with this amazing organization, and watching this year’s production of their two-hour show by the current members.

I am itchy with excitement and pride. It will be tears of happiness that I will be shedding as I watch them all do my favorite dance, the polka, and remember the awesome memories and goodness that I got from all of it.

My feet don’t move anymore and I’m okay with that now. But my heart still moves with a good beat, and that’s worth more.

MSers and Their Loved Ones

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“Two Sides of the Same Coin”

March 5, 2012

Both sides are living with it. Both sides have a different perspective of it. For a non-MSer (family, friend…) it is very difficult if not impossible to understand MS in the same way as the MSer because they walk in separate shoes. This is an extremely frustrating dilemma.

People who have MS need help and support; family and friends want to give help and support. How do you build a bridge to bring two towns across the river from each other together?

Communication and education.

In the beginning when a diagnosis is made, most people want to read about MS and learn what it’s all about: What is the cause? The symptoms? The treatments? The prognosis? That’s a normal and a good start, and a necessary one, for all involved. Sometimes a spouse, close friend or family member doesn’t do that or want to do that; then it is up to the person with the MS to find the ones that do, including reaching out to MS peers. Without people support, an MSer won’t survive their illness well.

During the initial education process, the understanding of MS begins to differientiate between both sides. The MSer is experiencing the fatigue, the numbness and so many other symptoms, but obviously the non-MSer is not. This is where the communication can start. The MSer can strap a ten-lb. weight around her husband’s ankle and tell him that’s what it feels like to walk with that leg. Or, she can have him put on a mitten and try to find things in her purse like coins or tissues if she has a very numb hand.

But the non-MSer will encounter two problems. First, how can they help a numb hand or a heavy leg? And second, many symptoms are invisible and it’s easy to forget that these symptoms exist. The MSer “looks so good”, or normal.

It is at this point that education needs to be tied to communication. The MSer needs to speak up in a nice way something like “My legs feel so stiff and heavy, I have to sit down and rest. When you have time, could you…” From the other perspective, the non-MSer can casually remark “You look like you are tired and struggling to walk. Do you want some help?” Or, “when I was reading the book you gave me, there was a suggestion to….do you want to try it?”

My husband will always help me, but I need to ask/tell him what I want or need and get beyond the feeling of “why do I always have to ask?” It is his nature to get frustrated easily and I find myself having to calm him down and direct him as to what to do. For example, if I slip and fall during a transfer from my wheelchair and yell to him for help, he will respond in a frustrated way: “What do you want me to do?—tell me what to do, tell me how to help you without hurting you.” I try to stay calm, tell him to calm down, then tell him what to do.

We MSers need to be educators, and open our mouths in a respectable way (when possible!). In addition, others around us will take their cues from us. If we are comfortable, they are comfortable. We set the tone. But many times we are cranky because we are so fatigued and don’t feel well, so our actions become mean toward our loved ones. They will have to develop a thick skin and remind themselves frequently not to take these mean attacks personally. Quite a huge task to say the least.

During an RV trip to Yellowstone one year, after a very long day of sightseeing and getting in and out of the RV I was exhausted. We came to the famous waterfalls, and my husband kept insisting that I have to get out and see them because I’ll never get the opportunity again. I kept saying I didn’t care if the sky was falling, I was too tired to move and I would look at his pictures later. He kept pushing until I finally exploded and screamed horrible things. We both felt guilty later; he felt bad that he went to see the falls alone and I didn’t go, and I felt guilty that I was so mean and should have pushed myself harder. We both eventually got over it.

A person with MS relates best with an MS peer since they are in the same shoes and understand each other best. Peers can be found online or through the MS associations. Equally important, the caregivers or loved ones also need to talk and share experiences with persons walking in their shoes i.e. their peers. Like an MSer, a non-MSer without peer support won’t survive MS well either.

I belong to a great National MS Society group on LinkedIn where both folks with and without MS have been sharing their questions/experiences. One member whose husband has MS writes a blog with him (www.relativems.com). They write some good material and take turns writing separately from their own experience and viewpoint.

They are a team.

Sometimes it’s hard for us MSers to understand why some people close to us (a mother or spouse for instance) don’t want to read something, or talk about it, or be around us. They can’t get comfortable with us having MS no matter what we do or say. Why is that?

They could be stuck in one of the “adjusting to grief’ phases like denial, anger, bargaining… For instance, sometimes a mother will feel guilty thinking that she was responsible for her son/daughter getting MS. In these situations, if each side can’t talk about their situation together, they will have to find their own way of dealing with these feelings. I had immediate family members who did not talk about MS or support me for years. It hurt. To overcome my grief I got professional counseling to help me accept the situation and focus on the non-MSers who did want to help.

Diets for MS?

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“You are What you Eat”

February 17, 2012

For years, many different diets have been promoted to help MS. Some claim to “cure” MS; others claim to stop relapses or prevent it from progressing.

I personally never followed a specific diet, such as the Swank Diet, but I always paid attention to what and how I ate. Eating to keep my weight down and my resistance up to prevent getting sick were my priorities. What made me feel well and not necessarily tasted well also were considerations. Common sense ruled. I knew extra vitamin B’s (for the immune system), C (for my bladder) and calcium (for bones, especially since I was on steroids a couple times per year) were good for us with MS.

In my book, Managing MS: Straight Talk from a Thirty-One-Year Survivor I wrote this as one of My Ten Commandments for managing my MS:

2. Eat properly.
I follow no special diet, eat what’s good for me and avoid what’s not. Truthfully, I don’t eat a lot. Balance, variety, and quantity are key. Lots of fresh fruits and veggies (low in calories, good fiber). A mix of fish, poultry, pork, beef, pasta every week (balance of protein, omega 3, carbs…). Small meals several times a day (keeps the stomach from expanding). Very limited sauces, gravies, butter (less calories); the plainer, the better (lots of seasoning gives me gas and/or causes me to retain water). Cook, broil and grill at home—I eat out only occasionally. I always drink water, except for a mug of coffee in the morning or green tea later in the day. No dairy products (they cause bloating and nausea for me, and are binding). Instead, I take calcium, and acidophilus for ‘good’ bacteria. I don’t deprive myself of potato chips or goodies—I just put a strict limit on them. No fast food unless I’m desperate. Liquor? I’ve had a cocktail or wine many evenings for years and will not give that up! I enjoy it and deserve it. My doctor tells me to go for it, as long as it’s in moderation.

I’ve been following this regime since my early years of MS back in the 80’s. In those days, I don’t remember the tremendous focus on diets, supplements and scientific research like there is today.

Fortunately, most of what and how I eat is “correct.” Nevertheless, I find myself reading articles and studies with regard to diet and MS more and more; many of the scientific theories and findings seem logical.

There has been much buzz the past few years about Vitamin D deficiency contributing to the cause of MS and the implication for flare-ups and progression. Studies suggest this could help explain why MS is less prevalent the closer you live to the equator. There also has been attention on the negative effects of consuming milk and dairy products. Now, all this interests me personally since I grew up in Pittsburgh where there are few days of sunshine a year; I rarely drank milk or ate dairy products since I was young child. Clearly I had a Vitamin D deficiency, though I guess not consuming dairy products is supposedly a plus. Since I moved to the Phoenix area ten years ago and am always in the sun, my MS has been quite stable and so I wonder if loads of Vitamin D from the sun exposure has contributed to this.

Here are links to two sites that I would recommend taking a look at: http://www.care2.com/greenliving/dietary-tips-for-treating-multiple-sclerosis.html  and http://www.terrywahls.com/

It is interesting reading. You may or may not agree with some or all of the content, but what do you have to lose? You are the best judge for yourself.

Debbie Petrina

www.DebbieMS.com