MS Bladders & Colons: TheraCran, Colonmax, Article May Help

“Why Not Try It?”

September 3, 2013

There are two supplements that I take that helps me tremendously with my neurogenic bladder and constipation troubles that are caused by my MS. They both contain natural ingredients, and I have used them safely for a long time without any side effects.

Note: I don’t sell these products, nor do I get a kickback from the companies and sell them. I am only suggesting them as something that may help you as much as they help me. And of course, we all know that what works for one person may not work for another…but it never hurts to try!

1. TheraCran is a standardized, high quality cranberry supplement to support/maintain urinary tract health. Cranberry products can greatly reduce the risk of a urinary tract infection—a common and serious implication for persons with MS. What is the benefit of these supplements over cranberry juice to help prevent UTI’s? They are less cost and virtually calorie/sugar free.

Check out this link for questions and answers about this product http://www.theralogix.com/index.cfm?fa=products.theracran.faq&dvsn=urology

Personal Note: I take one/day, not two as they recommend and it is just as effective. Also make to sure to drink plenty of water everyday, as this is not a substitute for that.

2. ColonMax is a natural solution for occasional constipation. It combines herbs and magnesium that help to gently encourage at least one healthy bowel movement per day and help stimulate sluggish colons. Magnesium helps to retain water in the bowel, which makes waste easier to pass. Cape aloe, rhubarb and triphala help to stimulate and strengthen bowel contractions. Marshmallow and slippery elm help to soothe and lubricate the bowel.

Personal Note: Because all ingredients are natural, I get no bloating or cramping. Sometimes it takes me two days to have a bowel movement. The link below that explains the product is a great online company that I have ordered from for years.
http://www.vitasouth.com/products/Advanced-Naturals-ColonMax%E2%84%A2.html

Finally, here is a very good article about bowels that plague so many of us that have MS: “Managing Bowel Problems that Accompany MS” http://www.unitedspinal.org/msscene/2007/01/16/managing-the-bowel-problems- that-accompany-ms/  

www.DebbieMS.com

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

Diagnosing Multiple Sclerosis

“What’s going on?—I’m so scared!”

February 5, 2013

Diagnosing multiple sclerosis is difficult. Being tested and waiting for a diagnosis is grueling for both the patient and their families. Even in this day and age, the process can take months, or even years in some cases. The stress of the testing, office visits and waiting can send someone over the edge.

I often see online posts about this subject, with an added comment like “I’m scared to death…” This always upsets me because someone or some article is not doing the job of explaining an MS diagnosis in an easy-to-understand manner.

Diagnosing Multiple Sclerosis

It takes a long time to get a diagnosis because it is a process of elimination, to rule out other neurological disorders that could be causing the same type of symptoms.

The process begins with a clinical office evaluation, whereby many things can be initially noted, like your history. There are indicators that a good neurologist will check out—such as the Babinski sign (if the bottom of the foot is scraped and the big toe goes up, not down, it is an indication of a neurological disorder.) Other examples? Hyper reflexes, discoloration of the optic nerve in the eye indicating inflammation/optic neuritis, signs of imbalance or incoordination when walking…

Next come the numerous tests—MRI’s, spinal taps, EVR’s, etc to look for things such as tumors; many neurological disorders have symptoms that mimic multiple sclerosis like Lyme disease or fibromyalgia. Note: The MRI is a powerful tool, but a neurologist will not only use that particular test for an MS diagnosis as many people like to assume. Why? Because lesions may not show if an MRI is done only on the brain; an MRI should be done on the spinal cord as well to check if lesions are there. Also, sometimes spots on the MRI may look like lesions, but they may be due to another reason.

The term “multiple” in multiple sclerosis is important. Why? Multiple symptoms in multiple parts of the nervous system have to occur over multiple periods of time. My first relapse lasted ten months—I had both sensory and motor disturbances in my left arm and left leg. Mysteriously, all symptoms went away except for a slight residual in my left arm. I didn’t have my second relapse until over two years later. That time I went partially blind and I was wetting the bed. When I went back to the neurologist, I was diagnosed immediately! Bingo!—a multiple occurrence in addition to the multiple symptoms in multiple parts of my body.

Finally, a neurologist will most often not give a definite diagnosis until they are definite that it is MS.

In the meantime, what should you do while going through this evaluation and waiting game? Try to stay as healthy as possible. Take all measures you can to sleep, eat, reduce stress and keep your resistance up so that you don’t get a cold or virus. And know that having multiple sclerosis is not a death sentence or that you will end up in a wheelchair. Read on…

A Multiple Sclerosis Diagnosis

Getting an MS diagnosis is extremely frightening. I went through it thirty-two years ago myself, and over the years I have talked to so many people about this as a trained, MS-peer counselor. The fear of the unknown is overwhelming.

Sadly, there are many misconceptions about MS that create a lot of fear. So for starters, here are some facts to clear up some common ones:

• No, MS is not fatal (though in past decades people died from complications of it such as urinary tract problems that led to kidney failure…)

• Although there is no cure, there are treatments available to help symptoms and to slow the relapses/progression of MS.

• It is not congenital (people do not directly inherit MS, though they now know that there is a genetic factor involved.)

• It is not contagious.

• Not everyone ends up in a wheelchair—in the 1980’s the estimate was 1 in 4 (25%). Today, statistics are on your side for a better future prognosis, especially with the new treatments available now and the tremendous research that is happening.

So what should a person do initially when he/she receives a MS diagnosis? These are my recommendations:

Gain as much knowledge and support from the right places. I suggest starting with the National MS Society and other National MS Associations in the beginning. But, there is so much information and so many other resources available it can become overwhelming, confusing and perhaps create more fear. Take baby steps when gathering information.

Your best source of comfort and information will be from another person who has MS, a peer. However, be selective with whom you talk to and use good judgment. Some unknown people online can cause confusion, be uninformed, misleading, and negative.

Make sure you have a good neurologist who treats many others with MS or is a MS specialist. You need to trust your doctor and feel comfortable with him/her. Also, make sure that any other specialists that you may need to see (e.g. physical therapist, urologist, etc.) understand MS and have dealt with MS patients.

Don’t freak out if you don’t get on a treatment right away–it takes time to figure out the right thing to take/do, and waiting won’t severely impact your course, for better or for worse. Keep a journal. You will start to see patterns and learn how your body acts and reacts. An easy way to do this is to use a 12-month calendar, with large blocks to jot brief notes in. It is helpful to see patterns when you are looking at a whole month at one time and easier to reference.

Remember that staying healthy is essential–getting illness/infections could trigger a relapse. MS is an autoimmune disorder; therefore the immune system is not working properly. When you get sick, you may be twice as sick and it may take twice as long to recover as compared to a “normal” person. Relapses usually result in some residual (damage). It’s a must to keep your resistance up—food, sleep, stress management…

Finally, there ARE many things a person can do to manage their MS! The biggest mistake someone with MS can do is nothing, or expecting a shot or a pill to fix everything. There is no magic pill or shot yet that you can take to make it all go away. It takes work, discipline, dedication, attitude, and the common sense to take care of yourself. MS is still a lifetime illness. Until there is a cure for multiple sclerosis, the goal is to stay healthy, prevent new attacks, and prevent disability.

I am a MS survivor as are so many others! Check out my website for more information.

www.DebbieMS.com

Attitude is Everything

“Taking Control of Yourself”

January 23, 2013

I was in the process of writing an article about the ramifications of mental and emotional health when living with a chronic illness like MS, when I came across the following post today while perusing an MS connection online site. It is so incredibly good I am taking the liberty of sharing it to others I know with MS.

“Hi everyone, I have been away from this site for a long time. Just recently got back on. When I first found the site I was looking for help with my MS. Received really good advice then didn’t come back regularly as I should have.

I have learned a lot in the last 7 months. I believe in “pay forward” so I wish to share this with you. I hope it helps and doesn’t insult anyone. The bottom line is I am in control of what I choose to do and not to do, remember this throughout this message.

I have had a multitude of symptoms. Number one is DEPRESSION! I believe this is the cornerstone to a lot of my choosing not to do. I have done mental health therapy with a counselor, PT and OT. Through all of this I became educated. Now I am realizing that I chose to stay in my poor me syndrome. I was so sick of doctor appointments, running constantly which cause me to be exhausted and frustrated because no one could fix me.

I hate the cognitive fog, forgetfulness, physical limitations, sexual dysfunction, tremors, pain, confusion; I hated every part of MS and what it has done to me. I missed the old me and desperately wanted to be fixed without having to work so damn hard to try to get back to the old me. My neurologist told me “change your attitude and you will feel better”. I was pissed off to say the least. It has been 2 months since I have seen him, and I now know he is right. I am in control of my attitude.

My depression was preventing me from living, and I chose to stay this way in misery. We increased my depression meds and I slowly began to change my attitude, which is very challenging with the unpredictability of MS.

I am trying to laugh alot more and trying to adapt to my challenges. Helping myself get enough sleep, drinking fluids, getting educated, another words helping myself. There are days I eat the wrong foods, drink too much caffeine, smoke too much (still working on this need to quit) and those days I know I have myself to thank for how crappy I feel. Exercise is very helpful mentally and physically. I wouldn’t exercise because I couldn’t do what I used to do, so I chose not to do it. This only hurts me more.

So I guess what I want to tell you all, is look deep into yourselves and do a personal inventory. I had to realize I can’t be fixed. No cure for MS. Accept this. Then change your attitude from can’t do to I can do. Find the laughter! As hard as it is to do, acknowledge we are not who we were before MS. We are trapped in this auto immune, unpredictable disease. Say this totally sucks. Then move on. Start over building the new you. Challenge yourself to be the best you can be each moment, acknowledge your success and failure. If you fail, look at the reason why, did you bring this on yourself? Sometimes we cause the situation, other times it’s just the MS. If the latter is the cause, move on; adjust then if you can laugh through it. But you have to move past it.

I type these words and know some of you won’t get it and maybe it will help some of you. I chose not to do a lot; I needed to wallow through the misery of MS. I will have bad days, and if I chose to stay there, this is my choice. I can’t imagine anyone not being depressed with a diagnosis of MS. It’s so devastating. I remember when I was diagnosed I thought “oh thank God I’m not crazy”; there was a reason for what was happening to me. But then I allowed the MS to make me crazy by wanting to be fixed and have all this crap go away. Well it doesn’t and everyday is a new day and full of challenges and ups and downs.

Also, how many times have we heard stress will exacerbate our symptoms, “try to avoid stress”? OMG! Are you kidding me? Ladies and Gents life is not stress free nor is it avoidable. The key to success is how you handle the stress, not how do you avoid it. I mean really you have this incurable disease that has robbed you, this is stressful.

I have a new attitude (most of the time) about stress. It is what it is. I look at stress and think how does this really affect me? I can allow myself to get all wrapped up in the drama, or I can meet it head on, fix it or forget it. If you can end the drama, do it. Set the boundaries. Don’t allow others to suck you into things that really don’t affect you. Shelter yourselves from the unnecessary drama. This only zaps your energy and well being. You need to protect yourself. Stress is like infectious bacteria that want to invade you and make you sick.

Set boundaries, make them know and put up your shield. Some people may think you are being mean or uncaring. So be it. I know what I need to do to keep myself upright and moving forward. If they can’t accept this, then I guess they are not ready to accept me for who I have to be. I can help them but only if they don’t suck me into the stress and drama.

You need to see things in black and white at first, don’t allow a gray area. As I learn more about me and what I can tolerate, I may be able to not have such a strong force field around me. But for now this is what I need to do for me. This saves my energy for the moments I have to really deal with big stressors that take me by surprise. Then when I have those stressful times, I can take a realistic approach to how to not allow it to make me sick. I can think clearer and reset the boundaries for each “big” stressful situation. May the force be with you all!

I hope this rambling helps most who read it. Some of you may think I am nuts (sometimes I am but my counselor assures me I am not crazy). The bottom line is take care of yourself first, everyone else comes after you. You need to find your “new” self and set realistic goal and boundaries and make them known. Say them out loud for loved ones to hear and understand. Ask for help, but don’t ask everyone to do everything for you. Rise to the challenge and find the “new you”. I never thought I would say this, but MS has helped me to see how the old me really wasn’t all that healthy mentally or physically. The new me will be a new and improved, just slower but I have a better outlook today than yesterday and for that I am grateful.

Best wishes to you all! Your friend in MS, Michele”

No Michele—you are not rambling and you are not nuts. You are an incredible inspiration. There is a sign in my doctor’s office that reads “Attitude is everything—Pick a good one!” I love yours and the next time I get down in the dumps and have trouble getting out of it, I will read your post. I give it a AAA+ grade, for An Awesome Attitude.

There is no mystery that people with positive attitudes are happier, live longer, and are stronger.

Thank you.

www.DebbieMS.com

Office Visits with your Neurologist

“Good Advice for Being Prepared”

December 10, 2012

Not having enough time with your neurologist or feeling that you didn’t get your questions answered is a common complaint by patients today. Often we blame the doctor and his/her office but there is the other side of the story—the doctor’s!

Be Prepared!: How to make the most of office time with your neurologist… is an article worth reading. Written by Avitzur, Orly M.D., M.B.A., it was printed in the current issue of Neurology Now—the American Academy of Neurologists Magazine for Patients and Caregivers.   http://bit.ly/QSp1uH  I’m taking the liberty of sharing this via by blog, since you are my friends I am given the option by them to share this with my friends :).

Finding a neurologist that you are comfortable with, one having high credentials/reviews, and one that has a specialty in your particular chronic condition is essential. After you read this article, ask yourself: do you do this before your visit, and does the doctor respond in the way this doctor suggests?

For those of you not familiar with the magazine Neurology Now, you take a look at it online and subscribe to it for free. While it addresses many neurological disorders, I have found useful information relating to multiple sclerosis for myself. And other things like Parkinson’s disease that my friends have…

www.DebbieMS.com

Managing MS: Straight Talk…

“Why Read This Book?”

There are many books about multiple sclerosis. If you want or need to read something about this neurological disorder, I’m going to explain why Managing MS: Straight Talk From a 31-Year Survivor is THE book you should read.

I will give you my pitch that my book is unique because of its presentation, content, creditability and tone:

• MS is complicated to understand. I make it easy to understand using a “what to know—what to do” format for a wide array of subjects like symptoms, treatments, interpersonal relationships…

• It’s short, inspiring, and interesting. People who have read it so far are amazed at what they learned in the short span of only several hours it takes it read. Wonderful reviews have been received from a wide range of readers.

• People are afraid of MS. Even the sound of “multiple sclerosis” is chilling. A main objective when I wrote the book was to help reduce the fear of living with MS, no matter if you have it or not. I felt it crucial to use a tone, words and expressions that would enable the reader to feel comfortable. I clear up misconceptions about this disorder.

Managing MS is accurate. Information and resources contained within have been endorsed by a variety of health care professionals, including one of the best neurologists (MS Specialist) in Phoenix, AZ.

• I am a peer. I lived the major part of my adult life with MS and survived it. This book is not a story about me, although I do share personal experiences to explain things. It is a guidebook incorporating my experiences with thousands of people I interacted with over 25 years. I have been and continue to be a volunteer, educator, counselor, and researcher in the MS community.

• It’s affordable/ available in all formats. Even if you pick up a few tips, it’s worth it.

• There is information that is useful to those living with other chronic diseases, such as how to handle fatigue, doctors, or interpersonal relationships.

I invite you to visit my website www.DebbieMS.com  that gives much information about me, my credentials and Managing MS: Straight Talk From a 31-Year Survivor. It also includes self-help videos, weekly articles I write, other activities I engage in to help persons dealing with MS, and an email address where questions can be submitted to me. Here are some quick links within my site:

• A profile The National Multiple Sclerosis Society posted on their website this summer. http://nationalmssociety.org/online-community/personal-stories/debbie-petrina/index.aspx

• A book trailer I recently created myself http://www.youtube.com/watch?v=4X0YErTxXbM&feature=youtu.be

• Orange Awareness Campaign for MS I created and launched (this is fun!) http://www.youtube.com/watch?v=JtMjKXP4dQU&feature=plcp

• A “Meet-the-Author” video at the bottom of the Home page on my website that discusses many aspects of MS, not just the book.  Great for “newbies.” www.DebbieMS.com

I want to emphasize that this book is about managing MS. There are many things a MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease, both with and without medications. But this all takes knowledge, support, work, dedication and discipline. There is no magic pill or injection that will manage, fix or control MS. Not yet.

So if you are looking for a book about multiple sclerosis that is an autobiography, full of specific medical terminology, or containing the latest breakthrough drug or study, this is not that type of book.

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

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

 

 

Managing MS vs. Living with MS

“Are they the same thing?

October 1, 2012

Is there a difference between Managing MS versus Living with MS? Yes and no. It depends on who you ask.

On September 24, The NPR Diane Rehm Show aired “Diagnosing, Treating and Living with MS. A panel of experts—neurologists/MS Specialists including a doctor who has MS—answered audience questions about diagnosing, treating and living with multiple sclerosis.

My first response after listening to the show was that the doctors in the discussion did not truly address “living with MS.” The responses were dominated by treatments and medications that patients should take. Questions that were asked about symptoms like spasticity and fatigue or lifestyle activities like diet, stress and exercise were glossed over with comments like “research hasn’t yet shown…” or reverted back to the necessity of getting on a treatment ASAP.

I have had MS for 32 years, and while I think the treatments available and new ones on the horizon are exciting, I would like to point out that there are so many effective ways to manage MS daily that should be understood that are non-medicinal.

Management of MS should be a two-pronged approach: medicinal AND non-medicinal. A person should not only rely or be concerned about drugs to solve their problems with MS. It’s not enough to just “live with it” and think that having an injection or popping a pill will magically take away or minimize the problems MS burdens a person with.

There are numerous things an MSer can do to manage and control (yes, control!) both the symptoms and the course of their disease without the drugs. But this all takes knowledge, support, work, dedication and discipline. There’s no easy way out of it, but trust me, it works!

First, a healthy lifestyle should be maintained to prevent illness, stress, etc. that can help minimize further relapses/damage to the CNS. This means keeping your resistance up and body healthy through proper exercise, diet, stress management, sleep/rest etc. Illness/infections often trigger a relapse by activating an immune system response with subsequent damage to the CNS. Extra precautions to prevent accidents/falls (like using disability aids) would help accomplish the same thing.

Second, there are many things a person can do to manage symptoms. For example, I suffer with much spasticity; by doing daily stretching/exercising, while taking baclofen (a medication to reduce spasticity), the stiffness and tightness is greatly reduced for me. Another example is the importance of learning good bladder management from a neuro-urologist. Eighty percent of persons with MS will suffer from a bladder issue at some point. Putting up with a leaky bladder by wearing pads is not only distressing, it is dangerous. Urinary tract infections (UTI’s) are common and can lead to complications and undesirable consequences.

Understanding the sensitivity of MS to so many factors that intensify symptoms can enable a MSer to take certain actions to calm their symptoms. A prime example is the negative effect that heat has on symptoms like fatigue, endurance, balance… One can learn easy ways to counteract it quickly by using a cooling vest, ice packs, drinking ice water and taking a cold shower. Fatigue—the hallmark symptom of MS that affects 90% of MSers—is another symptom that can often be managed by frequent resting, lifestyle changes, support from others…

Alternatives therapies have helped physical, emotional, and mental issues for many, many folks with MS. These things include yoga, trigger-point therapy, pilates, deep breathing, tai chi, reflexology to name some of them. Finding things to make a person feel better goes a lo-o-o-o-ong way. Some things work for some better than for others, but how do you know if you don’t try them?

After the Diane Rehm show was over, the doctors continued to answer questions submitted by people. Dr. William Shaffer, an attending neurologist who also has lived with MS since 2002 had this to say in response to a couple of off-the-air questions:

“The disease modifying medications do not directly help with symptoms in MS. At the same time, if the disease is being modified with a proper medication, sometimes people do feel better with their symptoms. However, there are many medications/management for the many symptoms we as people with MS can experience.”

“I don’t know any specific numbers on people who didn’t take medications and how they are doing. If you look at it like this, these medications are to delay disability, slow progression and some can have improvements on MRIs. I can tell you that I have seen people in my clinic that had been doing well for years and so didn’t start any medications. But, then they had an attack that hit them quite hard. Then they wanted to go on a medication, “to get better.” I told them that the medications are to keep from getting worse and not to make one better.”

Finally, one of the doctors had this remark: “We encourage patients to really think about lifestyle issues, to maximize their activity and exercise, and also to maximize healthy diet, because we now know those things do impact the amount of residual disability people have.”

I wish that comment had been made and talked about during the show.

So if you asked me if there is a difference between managing MS and living with MS, I would respond “yes!” Managing MS should be an integral part of living with MS. I know many people who have had MS for 20-30+ years and I know they would respond to this question the same way.

But the opinion of the person with MS is what ultimately matters. Do you want to just live with MS, or do you want to take some control and manage your MS while living with it?

The choice is yours!

For more info about me and what I am talking about, please go to 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