The Power of a Smile

Don’t just smile for photos. The few seconds it takes to smile—anytime and often–has tremendous value and it’s free.

My favorite columnist, Harvey Mackay, reminded me that it’s National Smile Week, held annually during the second week of August.

 

Did you know these facts about smiling?

  • A smile improves your looks and takes years off your appearance.
  • Smiling makes you more approachable, increases your attractiveness, makes you appear more intelligent and improves relationships. Smiling conveys a message of happiness, approachability, and confidence. (These are things managers typically look for in employees.)
  • Health benefits from smiling are enormous, Research has shown that a smile is a natural antidepressant; it reduces stress/anxiety and elevates moods. Smiles can help the immune system, lower blood pressure, and even serve as a pain reliever.
  • Because smiling has the power to reduce stress, it increases your ability to deal with trying situations.  Why? Smiling boosts endorphin output and forces us to breathe deeper, resulting in a calmer outlook and increased coping ability.
  • Smiling encourages positive thinking. When dealing with a negative situation, a candid smile inspires positivity.
  • If you’re having a bad day, force yourself to smile. Research suggests that the act of smiling can actually trick the brain into feeling happier, no matter how bad the current situation may be.
  • Smiling is contagious. Just think — you can help another improve their well-being by giving them a chance to smile back! Happy people influence the people closest to them and provide a boost of good energy. So, next time you’re feeling down, seek out your happiest friend and let the smiles begin.
  • No matter where you are in the world, smiling is recognized as a universal display of happiness and good nature.

In my book Managing MS, here’s one of the tips I share for how to deal with people when you have MS:

“Smiles and kindness go a long way–

Even if you feel crabby, fake a smile anyway. We need people and most of us like to interact with people. I’m almost always nice and smiling at people. When I ask for help, which in my case I have to ask for help a lot, I get what I need with a smile back. If I’m in a grocery store and can’t reach an item, I’ll nicely ask “When you have a moment, would you reach something for me?” I always get help, usually followed by the offer to let them know if I need anything else.

When I was in the hospital last year, even though I felt miserable I always was kind and patient with the nurses. The nurses would actually give me extra attention, because they would remark how cranky everyone else was. They would sometimes hang out for a few minutes to yak, which actually elevated my moods. It’s hard to do when you yourself are feeling so miserable, but the positive responses back are worth it.”

Don’t you think that if people smiled more, it would help make the world a kinder and happier place? While smiling certainly doesn’t fix all problems, it certainly has the power to make us feel just a little better at any given moment.

Debbie Petrina                                       
Author of Managing MS   
Moderator, MultipleSclerosis.net 

 

A Remarkable Story about Life in Bush Alaska

Melissa Cook spent twenty years living and teaching in remote Alaska.  She is now an award-winning author of her memoir The Call of the Last Frontier. Melissa has MS and authors her blog MSsymptoms.me.  I just finished reading her book and want to tell you what I think:

Read it! You’ll be glad you did.

I have MS and took a 16-day land and sea tour of Alaska some years ago. My visiting experience is miniscule compared to this admirable memoir of Cook’s life in the Last Frontier. Our luxury cruise ship navigated an horrific 2-day storm with 90 mph winds off the coast of Ketchikan. To read about what it took to live through similar winds and constant rains in the bush is unimaginable.

Visiting Alaska was wondrous, but Melissa’s personal account of living there is extraordinary through her eyes, words, senses, and thoughts.  There is little more I can add to other reviews of her book on Amazon, BookBub, and Goodreads.  Brave isn’t a big enough word to describe her “adventure” as she refers to it. I have grit, but not this much.

The only thing I wonder about is the extent MS really had on her; I think she downplayed its true impact on her physically, mentally, and emotionally. Nevertheless, her strength and resilience to survive the Alaskan bush with MS is remarkable.

Melissa now lives in Wyoming and documents her current adventures on her You Tube channel, Wyoming Jeepers. (I’ll stick with cruises!)

If you read Melissa Cook’s book, be sure to write a review telling her what you think.

Debbie Petrina
Author of Managing MS 
Moderator, MultipleSclerosis.net 

Is There Light at the End of the Tunnel?

On the cusp of our MS diagnosis, we are gripped by fear and panic. With no cure, we envision ourselves entering a dark tunnel of unknowns. How do we begin living with it? What will life be like? What will be at the other end of the tunnel? A never-ending list of questions follow.

Years ago, I read a story about a lady who was on her way to her dream vacation in Italy. Somehow, the plane got diverted, and she ended up in Holland. The dream was shattered, and now she was in a country she knew nothing about. Grief—denial, anger, sadness, bargaining… Having no choice in the matter, she finally accepted her fate.

The lady took action and learned about Holland as quickly as she could. She discovered that Holland turned out much better than she expected. There were tulips, windmills, Anne Frank’s house, Van Gogh Museum, amazing architecture, canals, gouda cheese………

Forty-two years ago, I was looking into that dark tunnel. I took action to make the best of an unplanned situation.  Now, 42 years later, I’m on the other side of the tunnel.  It all turned out much better than I expected. As I travelled through the tunnel, the light at the end got bigger and brighter. The grief in my “Good grief!” moment evolved into something I call “good” grief.  It’s all explained in my book.

Opportunities aren’t opportunities unless you act on them. If you make the best out of an unplanned circumstance, it may turn out better than you thought.

Is there light at the end of the tunnel?  The choice is yours.

 

Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net 

The Age of Overkill

Overkill: “An excess of something (such as a quantity or an action) beyond what is required or suitable for a particular purpose.”

Life was simple in the 1950’s. Throughout my long life, I’ve witnessed the evolution of product choices, variety, and quantity. Vehicles, foods, gadgets, electronics, medicine… On the one hand, it’s wonderful to have so many things to choose from. On the other hand, more isn’t necessarily better.

Overkill is stressful; it takes a lot of time and energy to figure out what/where/how to buy something and which is the best value.  The learning curve is constant with new updates and inventions to try or buy. Overkill can easily lead to over-spending, over-shopping, over-eating, over-doing, over-treating…Overkill can even kill.

Especially in the medical field. Our medicine cabinet in the 1950’s contained aspirin, Pepto-Bismol, Caladryl, bandaids, a bottle of hydrogen peroxide and a thermometer. We had annual checkups with our GP and eye doctors at their home offices; emergencies in between were handled by a single call and a same-day visit.

Today, the quantity and types of doctors, specialists, tests, medications/treatments are amazing. Obviously, having what is available in medicine is tremendous for our health and wellness needs. The downside, however, is that the excess of so many options with doctors, treatments and healthcare specialties has created complicated health management. And legal ramifications (another topic, another time.)

?????????

Who takes care of coordinating our previous/current day status of doctors and medications?  Many people assume that current-day technology does this. Others assume their PCP does this. During a visit with my PCP yesterday, my list of meds was not updated since our visit six months ago. Only one of the four specialists I had seen sent him an update of that visit. It was no surprise to either one of us. Dr. S. added that it’s a now a common problem, and it’s being exacerbated by the increasing number of specialists.

Age brings wisdom. Having lived for 67 years, (42 of them w/ MS), gave me quite an education with doctors and medicine.  My own health team grew to include many PCPs, 8+ MD Specialists, P/T & O/T to help just about every part of my body. I can’t count how many times or days I spent in hospitals for myself or other family members.

Who keeps track of my medical management? I do, because the  constant change of all variables over time can’t possibly be coordinated by anyone else. If anyone believes that their PCP, insurance, computers, etc. does this, they are mistaken.

I have always kept a journal and made sure every drug, doctor, pharmacist was up-to-date and connected with my current health status. For every new visit and prescription.  It’s my responsibility, even if a screw-up happens in our health system (that does a great job of covering their butts).

Another consideration: who do you trust as a backup for your medical management if you get in a situation that you can’t do it on your own?

In a recent blog article, I told the story of my mother.  Poor medical management almost killed her. Assisting my stepdad with her care management since January revealed many previous mishaps. During the past couple of years, she had been overmedicated and prescribed several wrong medications. Doctors (i.e., PCP, neurologist, GI specialist….) were not coordinated with her meds and updates; follow-up visits with the team of doctors did not occur. Stepdad is her health care manager; but in some cases, two heads are better than one.

It’s complicated to live nowadays. It’s complicated when sickness befalls us. It’s complicated when we grow old. It’s complicated to die. Crap happens when you least expect it, whether it’s you, your partner, your parents……..

Medicine is complicated. I don’t trust anyone but myself with my medical management. I read every word in every document before I sign it. My husband is my backup.

What about you?

 

Debbie Petrina
Author of Managing MS 
       Kindle Unlimited
Moderator, MultipleSclerosis.net 

 

Is This How You Feel?

id-10088180

Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? Are you lost in mounds of info?  I was in these shoes once a long time ago.

Since I have lived with MS since 1980 and have been involved with the MS Community for nearly four decades, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and have been hard at work to help.

Managing MS a simplified, practical, all-in-one self-help guide for managing and understanding MS. I authored and dedicated this book to my MS peers to help them and their loved ones live with this invisible, unpredictable, disabling disease. Within hours, the reader will gain knowledge and support so that action can be taken enabling better control. There are many books about multiple sclerosis but I like to point out these things about mine:

• I felt it crucial to make it an easy read using a tone, words and expressions that would enable the reader to feel comfortable. Like I am talking at the kitchen table with them. Living with MS is frightening; one of my objectives was to help reduce the fear.

• Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine was to offer guidance and tips for managing these things in a manner that is easy to understand—like an instruction manual. I strived to make it compact, informative, and inspiring.

• This guidebook is a collaboration of both my experiences and those with peers, MS bloggers, professionals, and others that I interacted with about MS in for decades.  It was read and endorsed by health care professionals in different fields that I believe lends credibility: an MS specialist neurologist, an internist, a MS physical therapist, nurses, dietitian.

Who should read this book? Anyone who might have MS, has been diagnosed with MS, family, friends, or people who deal with MS patients such as doctors/healthcare personnel.

Diane Perry, NPC,  Consultants in Internal Medicine in Glendale stated:
“As a nurse practitioner, the book opened my eyes to the effects of the disease on my patients’ lives and their needs. This is not a textbook read.”

Carol Daily, CRNP MSN, [PwMS] in her review said “This book should be given to every person having MS, I encourage any MS organization, medical staff, family or friend to do so and to read it also, especially the medical staff, (so you guys can give better advice).”

I counsel, write, research, and advocate awareness/education of MS through my website and other social media. Continuously. This is my purpose in life,

Please go to my website, check it all out, and decide for yourself. If you do read Managing MS, make sure to tell me what you think in a review or an email through my website.

 

Debbie Petrina
Author of (2nd Edition) Managing MS 
Moderator, MultipleSclerosis.net 

 

 

 

Use Numbers to Increase MS Public Awareness

“There is strength in numbers.”
June 19, 2014

Numbers can be powerful; they draw a lot attention depending on how they are presented, what is presented, and how big they are.

Maybe if the numbers about the multiple sclerosis population were given more attention, a larger draw of funds donated would be given for research to cure, stop, and restore this disease. And it would increase public awareness about MS.

What kind of numbers and what could be done?

1. Update the number of people who have MS.

The same numbers have been used for years, maybe decades–400,000 in the U.S. and 2.5 million worldwide. These same numbers are used by everyone—MS Organizations, Pharmaceutical companies, Health organizations, the government…
In March, 2006, there is a document that was published that said:

“Steps are now being taken by a federal agency and by the National MS Society… including a proposal to develop a national surveillance system for MS and the launching of a National MS Society Task Force on Epidemiology. These efforts should help to bring researchers closer to identifying a possible cause of MS and should bolster programs and advocacy on behalf of people who have the disease…Conclusions: It has been over 30 years since the federal government has seriously addressed the issue of incidence and prevalence of MS, so the interest on the part of the ATSDR in tracking MS is a welcome and major step forward.” http://www.medicalnewstoday.com/releases/40510.php

Sadly, it never happened. The perspective of 400,000 persons can seem miniscule relative to a population of 300 million in the U.S., and compared to other chronic illnesses and diseases.

Most people involved with the MS community would agree that the current numbers used are much understated. Is it due to people getting diagnosed earlier as a result of more sophisticated technology enabling faster diagnosing, or is MS becoming more prevalent? When it comes to the total number of people living with MS, does it really matter?

When I told people thirty years ago I had MS, there was so little awareness and many people had never heard of it. Nowadays when I tell people, most people tell me they know someone who has MS. I’m not alone in this observation.

2. If the estimated cost to support a person with MS were publicized, the public would be amazed.

Let’s face it, MS is an incurable disease right now, is progressive over time with increasing disability for most patients, and lasts a lifetime. What kinds of costs? Doctors, specialists, physical/occupational therapy, ongoing tests, medications/treatments, walking aids, adaptive equipment, adaptive housing, medical supplies, hospital stays, in-home nursing…the list is endless. Stated on the NMSS website, it is estimated that it costs upward to $70,000/yr. for one patient living with MS.

Who is footing the bill for all of this? If people had any idea of what it costs to help a person with MS (e.g. annually, over a lifetime…), or overall what an estimated cost would be to support all MS patients, I bet those outside the MS community would reach into their pockets more. For example, a power chair can cost up to $20,000; the annual cost of a DMD could cost $20K–$60K annually, a required MRI is at least $1,000, etc.

People don’t think about costs of a health problem until they are personally affected. Making the public aware of costs associated with MS would at least cause them to stop and listen.

3. How many people with MS are on Social Security, and what is their average age?

Information about Social Security generally attracts attention. Numbers about patients with MS on SS should be explained in conjunction with the realities of MS disabilities: educating what the disabilities are and what a person with MS goes through to get on disability. (see http://debbiepetrina.authorsxpress.com/?p=289 )

4. Graphs, like pictures, can be more effective than a thousand words. And what is shown on those graphs can raised eyebrows.

Some examples: a graph could show the percent of persons with MS with various symptoms (% with fatigue, bladder, vision, bladder, walking problems); a timeline of after diagnosis, how soon the average MS patient develops certain symptoms; the process and effect that drugs/treatments has on a MS patient; the rise of MS cases in the military.

Get graphic and show realism. There are times and places to show what people with MS can’t do; or, what it takes to help them to be able to do.

5. Show the combined efforts of MS activity on a national scale, more often.

Much independent activity by MS organizations, pharmaceuticals, MS clinics, are going on but the activity is usually within their own domain, on a local level, or in a specialized newsletter or magazine. Collaboration of all of these individual activities, or “the sum of the parts” would demonstrate the magnitude and dedication of MS. Again, there is strength in numbers.

The media thrives on numbers, human interest stories; everyone—“big or small”—can become an advocate alone or with an organization. And there are certainly enough celebrities out there with MS that I bet would participate in sharing the realities of this debilitating disease as they display their courage living with it at the same time.

Yes, getting these numbers and creating strategies would take money and time. But it would be an investment, with a great return on that investment in donations, grants, and funding.

These are my thoughts. Maybe I am wrong, and things are happening that I am not aware of. I am interested in your comments and your ideas about this subject and content.

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

Please visit my website for more articles, videos, my book, MS information and resources.

The Power of the Brain

“Mind over Matter”

During a recent January rut, I decided to escape into movie-land to occupy my mind with something other than my personal woes. I love movies and I have seen five of them that are recent releases. Four of them are based on true stories; one is not, but I like to imagine that it could have been.

As I watched these movies, it reminded me how powerful the brain is in our ability to survive. There is a common thread in all of them: Mind over matter. It is possible and it does work. Since I live with MS, I think about the brain a lot because it is a disease that involves the brain.

The movie Lone Survivor shows the unbelievable strength and endurance of Navy Seals, as does the lead character in Twelve Years a Slave. How can a person’s psyche be maintained while experiencing such immense physical and emotional pain? Matthew McConaughey’s character was given one month to live in Dallas Buyers Club, yet he finds ways to live another seven years because he’s not ready to die. All is Lost and Gravity are two movies that have characters with incredible intelligence in their fields—sea and space–who find themselves all alone in disastrous situations. Their ability to focus on using their skills and ingenuity, despite their obstacles, keeps their fears at bay.

The will to live, to survive, to endure, to think, to focus, to achieve… Sometimes these can be acquired through training; sometimes it just happens because of the human spirit, hope and faith.

We have all heard stories about people who obtain super-human strength and endurance. The guy stuck in a crevice who cuts his arm off to get free, or the woman who lifts a heavy car off of her child after a crash. POW’s who survive torture. Holocaust survivors.

There are people who beat the odds when given a bad prognosis for something like cancer. Or other chronically ill persons who get better receiving what they thought was a new drug, when unknown to them they had really received a placebo (i.e. a “sugar pill”)!

The possible, the positive. Positive thinking is like an ol’ shot in the arm for me. It gives hope and energy. The confidence to move forward.

I remember using Lamaze when I delivered my son, and had a relatively quick and natural childbirth. Yoga and deep breathing techniques are effective in helping my neuropathic pain and muscle spasms.

I read about the brain often to learn about new research taking place for MS. I’ll start Googling a particular subject like myelin repair, and an hour later I am immersed in reading about rehabilitating a stroke victim. Fascinating stuff going on with the brain.

Yes!–there are other ways to “train” or “re-train” the brain. I have had partial success in past years improving problems that MS has caused me, such as balance and coordination. My will to do aquatics therapy regularly has helped maintain function. Yes!—there has been great advancement in research for restorative function such as stem cells. Clinical trials have started. Yes!—the brain has the ability to repair some damaged myelin in the early years of MS. Yes!—exercising and resting the brain keeps cognition healthy and functioning well.

And then there are powerful things the brain responds to: brainwashing, hypnosis, and drugs. Both positive and negative.

It is a powerful organ, but a delicate one as well. For the life of me, I can’t understand why someone would do boxing or head-contact sports. While they are working on battering their brains, I’m working on protecting mine. And while some people will take any drug a doctor will prescribe (or not prescribe!), I diligently do thorough research before taking any new pill or shot. That is what my great-aunt used to refer to as “use your intelligence.”

Mind over matter. Realistically, it doesn’t always work. But I like to believe that a person can do just about anything if he/she puts their mind to it.

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

 

 

 

March is MS Awareness/Education Month

“Get Involved”

March 4, 2013

YOU are needed to get involved if: you have Multiple Sclerosis, someone you know has MS, are involved with MS associations, or have MS patients in your profession.

Why? Watch this video about my orange ribbon campaign http://bit.ly/YPI1Kq

How? It’s very simple. Read my MS Blog article that includes a quick summary of “What is MS” https://blog.debbiems.com/?p=113 

Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…….or you can tie an orange ribbon on your car or put one on your house!

Want to do more? Organize something as a team. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society http://bit.ly/YJxleg  .

Please start today!

www.DebbieMS.com

Take Care of Your Bladder!

“What to know – what to do.”

February 25, 2013

We are taught to take of our teeth, skin, heart, weight and so on every day. But our bladder, too?

Yep. We don’t generally think about the bladder until something goes wrong with it, like when it starts to leak or we feel that something is not working correctly “down there.” Then we have to figure out how to fix the problem.

To start, everyone—whether they have MS or not—should know about urinary tract infections and steps to take to prevent them. That’s because they are easier to get than many people think, and they do not go away on their own.

Urinary Tract Infections (UTI’s)

The primary function of the bladder is to serve as a reservoir to store urine that is produced when the kidneys filter waste products from the blood. Most UTI’s occur when bacteria enter through the urethra and stick to the bladder wall. And most UTI’s are caused by bacteria from the colon and rectal area. Once there, the bacteria will multiply rapidly.

Women are more prone to UTI’s than men due to their short urethra, a tube from the bladder to the urinary opening of the body. Since it is only about an inch long, there is less of a barrier to the entry of bacteria—so something like sexual activity increases their risk. Menopause also is a risk factor because the reduced level of estrogen allows an overgrowth of bacteria of the urinary opening.

What to do to help prevent a UTI:

• Keep the private area clean and dry. Always wipe yourself from front to back thoroughly, not back to front. If protective pads are used for discharges or leakage, change them and clean yourself often. Moisture between the legs is a breeding ground for bacteria.

• Drink plenty of water all day long—don’t restrict fluid intake. A high daily urine volume will wash out bacteria in the bladder. A low daily urine volume encourages UTI’s by failing to wash out invading bacteria; it also can cause stone formation and dries out the feces. You know if your fluid intake is good if the color of your urine is very light in color.

• Keep a high level of acidity in your bladder reservoir—this will inhibit growth of bacteria. How? Take 500-1000 mg. of vitamin C daily. (Do NOT eat or drink oranges or other citric fruits for this purpose as these actually increase the alkalinity of the bladder!) Many resources will tell you to drink cranberry juice, but I prefer not to drink the extra calories since vitamin C accomplishes the same thing. There is also a cranberry supplement available called TheraCran, but it is pricier than Vitamin C.

• Make sure your bladder is as empty as possible when you urinate. Don’t hold your urine for an extended period of time—when you have to go, go!

So how do you know if you have a UTI? Here are signs, of which some or all can occur:

 cloudy urine
 odor to the urine
 blood in the urine
 burning sensation with or without urinating
 urgency, frequency of urination
 fever

If any of the above signs appear, call your doctor immediately to have your urine checked. An antibiotic is necessary to eliminate the infection and possible further complications. Once there is a UTI, taking vitamin C, cranberry juice or consuming a lot of water will not cure it, and it won’t go away on its own.

Since this is an MS blog article, here is a special note to those with multiple sclerosis: A UTI will definitely affect your other MS symptoms as this is an infection, and if left untreated too long, will cause a flare-up and possible further complications.

Other Bladder Problems

The nerves and muscles work together in perfect coordination to control the storage of urine, signal the brain and void urine. But there are things that affect this perfect coordination, and these symptoms may happen:

• frequent urge to urinate
• frequent urination
• hesitancy in starting urination
• difficulty in keeping the urine flowing, or finish voiding
• incontinence
• nocturia—frequent voiding at night, at times without waking.

There are numerous reasons to cause these symptoms. Women sometimes have bladder issues due to pregnancies. Men may have a prostate issue. Others tend to have problems because of their age. And still others develop problems because of an illness. People with multiple sclerosis commonly have what is called a “neurogenic bladder”, whereby that perfect coordination of nerves and muscles become impaired.

The good news is that most of these types of problems are treatable under the supervision of a good urologist, by medications or other procedures depending upon the issue.
And fortunately we now live in an age when we can talk about bladder problems openly without embarrassment.

Doing nothing and just wearing Depends all the time is not a good strategy. Untreated bladder dysfunction can cause damage to the urinary tract, urinary tract infections, or damage to the kidneys. If you have multiple sclerosis, you need to see a urologist who knows about MS and neurogenic bladders, and begin to learn about bladder management as soon as possible.

Due to my MS, I had all six symptoms listed above with my bladder that started over twenty-five years ago. I found an excellent urologist who put me through several tests to examine and evaluate my bladder (dys)function. This is common practice. Then he taught me what to do using medications and self-catherization, and it changed my social and physical life immensely.

It is a process that takes time and practice but is worth it in the long run. I am really proficient at bladder management and though the damage to my bladder function is severe, I have been able to be like a normal person, and nobody would ever guess that I had problems in this area unless I told them.

I control my bladder now; my bladder doesn’t control my life!

www.DebbieMS.com

Multiple Sclerosis: What EVERYONE Needs to Know

“People just don’t know about it.”

October 22, 2012

There are two things many people say that irks those of us that have Multiple Sclerosis:

  1. “It’s that Jerry Lewis thing, isn’t it?”
  2. “But you look so good!”

No, it’s NOT that Jerry Lewis thing.  Jerry Lewis represents MD—Muscular Dystrophy.  MS stands for Multiple Sclerosis. Two extremely different disorders.  As we MSers talk to each other, we get discouraged that MD has had a national figure representing and fundraising for them.  We wish we had a national well-known person that could do the same thing for multiple sclerosis. 

So many people are not aware of MS.

Nor do they understand it.

If people really understood MS, they would know not to say “But you look so good!”  We would like to respond back “Thanks, but we sure don’t feel as good as we look!”  Why?  Because multiple sclerosis is largely an invisible disorder.  People automatically associate MS with walking problems and wheelchairs.

Being a disease of the central nervous system, potentially anything controlled by the CNS can be affected:  sensory functions, sight, cognitive/emotional functions—in addition to motor functions. These MS symptoms are not only invisible; they are extremely common and very disabling. Some examples include fatigue, weakness, bladder/bowel/sexual problems, numbness and tingling sensations, loss of sensation, balance/coordination issues, loss of vision, pain, dizziness, depression; the list is enormous.

Someone who understands MS would also know the detrimental effect any type of heat has on a MSer, whether it’s from the temperature, a fever, the time of day or a hot flash.  Or that staggered walking is not from too many drinks, but rather from a loss of balance/coordination due to damage in the brain.

Also, since many symptoms are invisible, many people do not realize that someone may have MS.  Or, because they don’t see a cane, brace, or other disability device, it is assumed that a MSer is okay.  It is hurtful to get dirty looks and remarks when a “normal-looking” person with MS gets out of the car in a handicapped space; their ability to walk before their legs start to wobble may be just ten minutes or 100 steps.

So, both awareness and understanding are needed.  To survive MS, we need a tremendous amount of support, not only from our friends and family, but from everybody.  Physical, mental, emotional and financial support.  Support for us individually due the difficulties and disabilities we live with; and support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects.

I started an Orange Ribbon campaign recently with the Arizona Chapter of the National Multiple Sclerosis Society.  We MSers and some of our friends and families have just about finished 5,500 orange ribbon pins that represent multiple sclerosis (like the pink ones that stand for breast cancer).  Our goal is to have them ready for distribution at the Phoenix MS Walk on November 3rd.

We want to create more awareness, and when strangers ask us “what’s that orange ribbon for?” we will explain MS.  We will be advocators and educators.

So if you see someone wearing an orange ribbon on their lapel or shirt, it means either they have MS or someone that they know has MS.  We make them ourselves using orange satin floral ribbon and safety pins. 

During one of our ribbon-making sessions, a woman asked “What do you say when someone asks what MS is?  It is complicated and difficult to explain.”  Keeping it simple and uncomplicated, I would suggest this:

What is Multiple Sclerosis?

Multiple Sclerosis is disease of the central nervous system. Potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.  Many symptoms are invisible, so many people don’t know someone has MS. (Examples: fatigue, weakness, bladder problems, numbness/tingling, pain…)

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown.  It is generally progressive.  The majority of persons afflicted will become disabled during the decades of their lifetime with no way to fix the damage. 

Every case of MS is different, unpredictable, and very uncontrollable. It is unknown what course the disease will take, what will be affected, how quickly it will happen, and how much disability will occur.  

There are new drugs that are trying to slow the progression, and meds to help relieve symptoms and shorten relapses. Nothing is available yet to prevent MS or restore lost functions resulting from its damaging effects.  However, there are many things one can learn to manage living with it.

We at the Arizona Chapter of the NMSS are starting to hand out copies of this brief description of MS to people we meet that do not know about multiple sclerosis.  We are going to encourage other MS groups and organizations to do the same.

We need help, and we certainly need a cure.

www.DebbieMS.com