Learn Quickly about Multiple Sclerosis–All in One Place

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                                        Need Easy and Accurate Direction?

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? You are lost in cyberspace trying to get info?

Since I have lived with MS since 1980 and have been involved with the MS Community for almost thirty years, 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 got to work. It now exists, and the positive feedback I have received from people has been equally overwhelming and gratifying.

I can help in two ways:

My Book: Managing MS: Straight Talk From a Thirty-One Year Survivor

I wrote a simplified, practical, all-in-one self-help guidebook for managing and understanding MS to help others dealing with this invisible, unpredictable, disabling disease. Within hours, you will gain knowledge and support so you can take action, which will reduce your fears.

Recently I received this email, one of many:

“OMG what a fantastic book in many ways. I want to give it to everyone I know so that they can understand it from the inside. Your section on invisible symptoms is fantastic. Everyone needs to read this book. Thank you, Debbie.”

Why should someone read THIS book? (Click here)

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, professionals, and others that I interacted with about MS in for decades.

• My manuscript had been 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, and nurses.

• Though I share personal experiences, it is NOT an autobiography, full of medical terminology, nor does it contain the latest breakthrough drug or study.

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, AT 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, 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 encourage you to check out reviews on Amazon.

My Website DebbieMS: A Wealth of Info in One Place

I counsel, write, educate, research, and advocate awareness/understanding of MS through my website www.DebbieMS.com and other social media. In addition to info about my book Managing MS: Straight Talk…, the website includes my background/credentials, self-help/educational videos on a wide variety of topics, links to my 80+ MS Blog articles, an extensive list of helpful resources/articles, and other activities I engage in to help persons dealing with MS.

I continue to add to it, and especially use twitter and various MS Facebook group sites to share current research and developments about MS on an ongoing basis. People can also write to me through my site and ask me anything.

Please go to my website and check it all out. You have nothing to lose, and a lot to gain!

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

 

**Image courtesy of Stuart Miles at FreeDigitalPhotos.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” http://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

 

 

The Ultimate Doctor

“Are You Happy with Yours?”

September 24, 2012

Two days before leaving on an out-of-state vacation recently, I started having the classic symptoms of a urinary tract infection (UTI). Increased spasticity, cloudy urine, frequent urination, burning. Within a day, the symptoms intensified and worsened; my bladder medication wasn’t working and I was leaking urine uncontrollably. The heat I felt from a slight fever contributed to the mayhem of it all.

Now bladder infections are nothing to mess around with, especially if you have MS. An infection like this not only is bothersome, but more importantly, it is painful and can quickly lead to trouble like a relapse and/or kidney problems. It needs to be addressed quickly.

Having dealt with bladder problems for over two decades and having to use self cathing to void, I know what to look for and what to do. But of course, I need my doctor to get me on an antibiotic ASAP.

It was a Sunday, and I was to leave on Monday. I called the office’s answering service, explained my situation, and requested the on-call doctor to contact me. I received a call within a half of an hour from the doctor. After a brief discussion, a prescription was called into my pharmacy immediately and I had the antibiotic in my hands soon after.

Now THAT’s a good doctor. To me, anyway!

Of course I had been a patient at the office for years, but nevertheless, he addressed my problem with no hassle or waiting. But, even if I wasn’t leaving on a trip the next day, the office has worked with me on this issue before. With past UTI’s, the office helps me on the same day that I call. I know how to take a “clean-catch” urine sample at home, take it to the office for a “squeezed-in” appointment that lasts no longer than five or ten minutes, and once verified that there is a bacteria, I get a script.

Having excellent physicians when living with a chronic illness is essential. It’s a lifetime relationship that requires frequent and unexpected visits, not a once-a-year annual checkup. I have doctors that I know rank in the top 10%. And I have doctors that treat many other MS patients and understand MS.

Now when it comes finding a physician, it is an individual and personal decision. By that I mean that one has to decide what he/she wants from their doctor and what the relationship needs to be. Find doctors and professionals that treat others with MS and fit your personality.

I’ll use myself as an example. I don’t want a hand holder; I want someone I can consult with. I am not a whiner and when I call, that means I need help ASAP. I want called back that day, action within a day. I don’t want to be dragged into the office when I’m too sick to get out of bed. When I go into the office, I don’t want to wait an hour. I’ve got a fatigue problem. I want to talk to my doctor, not the receptionist. I want my doctor to be connected with the latest studies and research.

Are you happy with your physician(s)? If not, it’s time to move on and find another one. You are in charge, not the doctor. You hired the doctor, and if you are not getting satisfaction, fire him/her and get another one.

Ask yourself what you want/need from the doctor and the office, such as good bedside manners; prompt responses; office visits; follow ups; experience; reviews. Interview the office/doctor before you make the first appointment.

So how do you find a good doctor? Get referrals from: a doctor you currently have that you do like, your local MS Society Chapter, family, people you know in the health field, and other MSers. Check their background and credentials on the internet. Two websites I use are www.vitals.com and www.healthgrades.com, but there are others; you can do a Google search using a phrase like “doctor reviews and credentials” to get other websites.

Finally, a couple of other tips:

• Go to the office or call on the phone prepared. Have your questions written down, have your problems written down with specifics. You will only have fifteen minutes with your doctor, if that. Don’t expect to be educated by the doctor. Expect answers to your questions. If you have a lot to talk about, schedule a longer appointment.

• If you have MS: Realistically, the most your doctor will do for you is to prescribe medications for symptoms, encourage disease modifying agents and make recommendations to other professionals (urologists, therapists…). Don’t allow yourself to feel pressured into anything you don’t want to take or do.

• You need to feel that you trust your doctor.

www.DebbieMS.com

Needed: MS Awareness and Understanding

“Wear that Orange Ribbon!”

August 29, 2012

Multiple Sclerosis doesn’t discriminate when it comes to who gets it. The playing field is equal.

It doesn’t matter if you are white, black, Asian, or Native American. Doesn’t matter if you are male or female, though females are 2-3 times more likely to have MS. Doesn’t matter which continent you live on, though it is more prevalent in northern latitudes. Doesn’t matter if you are young or old, though the onset is usually between the ages of twenty and fifty. And it doesn’t matter if you are rich or poor.

Even when the statistics reflect a higher percentage of occurrences in certain groups, there are still no exceptions. A person living in the tropics or a child can still develop MS.

When it comes to the types of symptoms one gets, the course of the disease, the duration of a relapse, or the amount of disability one experiences, MS doesn’t discriminate there either. No two people have the same identical case; no two people respond to treatments equally.

What is not equal is the amount of support an MSer can get depending on their financial situation. Now, before I go on, I want to make myself clear: MS as an illness is just as difficult and interfering to live with whether a person is rich or poor.

Now, having said that, here’s where inequality exists.

I am an “ordinary” person, like most persons with MS. Middle-to-low income. When my disability progressed, I had to quit my job. We were lucky to have enough money to pay bills every month, but there were no extras. Before my husband retired, I had to take care of our son, house, cooking, shopping, washing, paying bills, tax preparation, and so forth as best as I could. Now that he is retired, I am still lucky in that he helps me with all of these chores; however, we are on fixed income and each year the dollar gets squeezed more and more.

Now I don’t begrudge a person of wealthier means. They are still suffering too, and it is not anyone’s fault that they are richer than me. It’s just that I have the added stress and physical fatigue of having to do these things on my own. Of course I have the support of family and friends who lend a hand to do these things. And mental and emotional support available through MS organizations and peers.

But many times it is not enough to get through each day’s to-do list. Too often there is no safety net or easy lifeline when a job loss occurs or health insurance is lost.

I’m going to stick my neck out and say MS is harder on the “ordinary” person. The additional physical, mental, and emotional stress of an ordinary person has a negative effect on our MS both in the short and long term, probably causing our MS to be worse overall.

So, what’s my point? The point is that I want everyone to be educated about what MS is and does to an ordinary person. There are famous people in the spotlight who have MS and are creating awareness—like Montel Williams, Ann Romney, Jack Osborn. But their image doesn’t realistically project MS in the sense of the majority of us.

Many of us have been told “You look so good”, but these celebrities look too good. Again, through no fault of their own, the way media presents them causes misconceptions. So now there are two stereotypes at opposite ends of the spectrum: the dilapidated person in a wheelchair and the normal looking person so refreshed, energized and high-spirited.

The people in the middle, like the middle class, need to get into center stage for once. The “ordinary” person with MS needs a voice and attention on a national level. We have fallen through the cracks.

If someone wears a pink ribbon, everyone knows what that stands for. If it is an orange ribbon, most people wouldn’t have a clue what it stands for. The MS community needs celebrities with MS like Montel Williams to wear an orange ribbon everyday to increase awareness. The MS community also needs to wear an orange ribbon to build an identity on a daily basis. This includes the top brass of all MS Associations as well as their employees and volunteers.

But, in addition to awareness, I believe everyone needs a basic understanding of what MS really is:

MS is an unpredictable, invisible, interfering, often disabling neurological disorder that has no cure and isn’t fatal or contagious. One that impacts millions of people, lasts a lifetime, and has immense costs associated with it for every citizen in this country.

If that happens, more support for research, financial assistance, social security disability and other things will happen for multiple sclerosis.

Somehow, we ordinary people with MS who are also the majority have to band together and make this happen. Plus we need advocates at the national level as well.

So please put on your orange ribbon and spread the word!

www.DebbieMS.com

Using Perspective and Positive Thinking

“Overcoming Hardship and Loss”
June 4, 2012

“I had to put my beloved dog down yesterday. I’d rather have him back than the use of my legs.”  That was a tweet I sent out on Friday.

My dog Bear was such a faithful companion for thirteen years.  My son brought him home and gave him to me when he was only five weeks old.  It was love at first sight, and we were inseparable after that initial bond.  He was very sick when I had to make the decision to put him down.  I know I did the right thing, but I feel such sadness and grief right now.

He was my best friend.  He always listened to me, never was mean to me, and stayed by my side no matter what mood I was in.  If I was happy, he was happy. If I was sad, he was sad.  If I left the house without him, he laid by the door until I came home.  Our favorite activity was to take a long walk around the neighborhood every morning and greet the neighbors.

I started to train him to be a therapy dog early, and he was so smart he would put his own toys away.  Bear was so patient and understood my disability. At seventy pounds, he was sturdy and still as I grabbed onto him for balance, or needed help to roll over or stand. I swear if he could push a vacuum cleaner, he would have swept my floors for me.

Dogs are amazing animals.  They are incredibly smart and their senses are keen.  They don’t complain and if treated right, are so devoted; their love is unconditional.  They want to please, and are taught to be useful and obey. They assist police, soldiers, handicapped people, and others in incredible ways.

I am using the power of perspective and positive thinking to help me through my loss:

* Bear was very seriously sick and now he is at peace.  I know in my heart, mind and gut I made the right decision.

*We had thirteen good years together, and gave each other tremendous joy.  I was lucky, but he was lucky too.  He had a lot of love from everyone whether they knew him or not.  He was always fed, walked, brushed, played with and attended to when he was sick or hurt, up until his last breath.

*So many other dogs (or cats, etc.) never have these things.  They are abused, abandoned, or neglected.  Too many loving animals that could have what Bear and I had never get that chance.  In fact, he had a better life than most people on this planet.

*Likewise, even though I have many difficulties with my MS, I also have a better life than most people. My family loves and supports me, I live in a modest but comfortable home, eat well, and have everything that I need except perfect health.  But then again, I tell myself that things could always be a lot worse.  A good friend has a Down’s syndrome daughter; another friend has a severely autistic child.  My brother-in-law lost his 16-yr. child in a bad accident…

*It’s okay to cry or vent out feelings for awhile.  It’s not being weak or emotional; it’s being human.  My husband, son and I are talking about our feelings and memories.

*I am grateful for the sensitivity and kindness others have shown in support of the loss.  What would I do without my family and friends?

Throughout the years I have suffered many hardships and losses–my physical problems from MS; death of a parent, other close relatives and friends; financial and emotional distress from job losses of both my husband and myself—the list is quite long.  I have used my perspective and positive thinking through these difficult situations to help me cope with my grief.  Things happen in life we don’t always understand or think are unfair.  I think experience, age, my MS and attitude have taught me that. It may not work for everyone, but it works for me.

So I will be sad for now but slowly heal in time to the point where my sadness will dissipate and fond memories will replace it.  I will always feel Bear’s loss, but I accept it and will continue to move forward. Life goes on and Bear would want me to go forward with it.

www.DebbieMS.com

New Beginnings in Life

“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