Tag Archives: Multiple Sclerosis

What MSers Really Need from Others

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“The chronically ill, too.”

Even though this post was written for a MS Blog, the following list can apply to supporters of patients who are chronically ill. As an MS patient myself who was trained as a MS peer counselor thirty years ago, I found myself talking with and listening to patients who were chronically ill with something else.

This list is for family, friends, co-workers, health care professionals…i.e. the people we associate with in our lives. While it seems to be simple and just common sense, it is amazing how many folks say the wrong things or don’t even know what to say.*

1. Empathy vs. Sympathy
Most MSers don’t want you to feel sorry for them. They want you to try and understand MS and their symptoms/problems. Visualize putting yourselves in their shoes.

2. Listening vs. Talking
Sometimes MSers like to talk about MS and sometimes they do not. If they wish not to talk or get emotional, do not take it personally or compare them to others. More often than not, they need others to listen to them.

3. Inspiration vs. Reality
Inspiration is vital and wanted. However, there are times when MSers are so sick or fatigued, they don’t want cheerleading, humor, or advice. Give hugs and be sensitive to their feelings.

4. Knowledge and Support
The more accurate knowledge that is obtained from reliable sources, the less fear there will be. The more support that a MSer has from whom they interact with, the easier it will be for them to manage their MS, lives, and adjustments. What kind of support? Just ask the patient, or offer to do something to make their life easier (like make a meal, watch kids, do laundry…).

*Here is a link to view my background/credentials http://debbiems.com/about-debbie_269.html

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

Insurance Companies, Health Care Costs, and the Chronically ill

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“The Need to Fight Back”

Medical insurance companies are out of control because they have too much control. The same can be said about pharmaceutical companies and other large health organizations like hospitals.

Getting coverage, keeping coverage, being able to afford coverage are huge headaches for us. We need them and they know it. These greedy companies have tremendous power and resources, leaving us at their mercy. They decline truly needed things that our specialists recommend for us.

A fellow MS Blogger, Dave Bexfield, recently won a claim against a large insurance company that wrongfully denied payment for his life-saving stem cell procedure. http://nyti.ms/1oUQ5ZK  His 4-year persistent battle that included the help of NY Times’ The Haggler finally ended with his victory.

A victory that hopefully will inspire many others to follow his lead and fight for their rights. More people need to do this; there is strength in numbers. We are the buyers of their products; our voices and actions against their wrongdoings as a group can impact their control. Especially if we get our victories publicized by all types of media and large organizations; like Dave’s involvement with the New York Times and his social media bombardment that followed.

Fighting for your rights from insurance companies is hard work, especially when you are ill. It requires a tremendous amount of energy, time, patience and often money; things that people—especially the chronically ill–don’t have much of. The frustration and stress that one endures with the phone calls alone can turn the sanest person insane–long hold waits, dropped calls, rerouted calls, not being able to talk to a person… Most people who take on the fight with these big guns eventually give up; these companies count on it.

Those of us who are truly sick and trying to have quality in our lives are getting doors slammed in our faces for things that could help provide more quality or relief. We pay big bucks for our insurance coverage with our limited incomes that suffer because of our disabilities/illnesses.

Give us the benefits we pay for or are entitled to! Blow the whistle when something is just wrong.

WHAT TO DO?

• If your doctor recommends a drug, procedure, equipment, etc., make sure you get it.

An insurance company should NOT be the one who determines what’s best for your health—it should be your doctor and you!

• Read your claim statements carefully to make sure they are accurate.

For example, I went into the ER last year for chronic constipation, and my $5,000 invoice was for a coffee enema. It also included a $258 charge for a pregnancy test. I was 58 years old! When I called the hospital about it, the response was “What do you care? Your insurance paid for it.” No–they didn’t pay for it, we end-users did. Well, I reported this incident to Medicare, who ultimately went back to the hospital. I blew the whistle.

Yeah, I had paperwork to fill out and follow-up to do, but it was worth it to screw back the hospital that screwed me.

• Make sure you receive a detailed statement.

Some insurance companies don’t even issue detailed statements to patients. My 82-year old mother has an HMO with Cigna in Arizona and gets no paperwork for anything—not even a doctor’s visit. When she bragged about how easy it is not to deal with paperwork, I pointed out that failure of disclosure enables these companies to charge and cheat whom or whatever they want. Undercover fraud.

• Take control over what is done, why it is done, etc.

When I was in the hospital last year for a bladder infection, there were so many specialists that came in my room and ordered tests. I demanded to know “why and what for.” These 5-minute doctor drop-ins cost an average of $400 each! The hospital charged $6 for each baclofen that I took, and wouldn’t allow me to bring in my own prescription from home, for the same med that cost 6 cents/pill! I take 5-6 of these per day.

There is something called the “Chargemaster” that hospitals use that is their grand price list for absolutely everything a hospital will charge you for. It is different from hospital to hospital and has no cost basis. Read this eye-opening, special-report article that was published by Time magazine if you are a Time subscriber: “Bitter Pill: Why Medical Bills Are Killing Us” by Steven Brill (March 4, 2013 issue) http://time.com/198/bitter-pill-why-medical-bills-are-killing-us/. It will knock your socks off.

Nursing homes and rehab centers are another area where there is much abuse with a patient’s medical needs and medical costs. My husband and I were caretakers for his grandmother, who spent the last ten years of her life in a nursing home. We took control quickly over all her medical needs when we discovered the who’s, what’s, frequencies and costs of the nursing home’s directives for Grandma’s care. We took over all decisions and we checked the costs incurred for everything, questioning inappropriate charges. And we sadly watched the other patients in the home who didn’t have someone overseeing their care get cheated and over medicated. Check out this AARP article: “Nursing Home Drug Outrage” http://bit.ly/1vxITrz  (Page 12)

 • While preventive medicine has its merits, common sense should prevail.

There are a lot of kickbacks between insurance companies, pharmas, and doctors. I’ll use my mother as an example again. Her doctor sets up a bone density test, pap smear, and mammogram every year. This is for an 82-year old woman who takes her required calcium/Vitamin D and doesn’t have a history breast or cervical cancer in the family??? Check out this article about kickbacks: “Payments to Doctors Revealed” http://bit.ly/1lAZ2pn.

Re: doctors, here is another interesting article: “Medicare Patients Can Now Do a Check-up on Doctors” http://bit.ly/1g9gtL9 . Consumer groups and news outlets have pressured Medicare to release the data for years. Now, Medicare officials said they hope the data will expose fraud, inform consumers and lead to improvements in care.

Everybody complains about the insurance companies and healthcare costs, but are their complaints followed by any actions to turn a wrong into a right? Ask questions and appeal over and over again until you win. Be a gnat on their back. Persistence pays off, like it did for Dave.

I had my own fights over the years with insurance companies over so many things for different types of equipment (like a stair glide) or a procedure (like trigger-point massage). They wouldn’t pay for trigger-point massage that would provide pain relief from spasticity, but they would cover painkillers—additive narcotics that alter cognitive functions and cause constipation. No thank you.

Even though I lost some disputes, I won some too. Here are my favorites:

Thirteen years ago, I sought reimbursement for a $2,400 pool lift for my swimming pool, which was denied. I had been doing aquatic therapy three times a week for twenty years—paying out of my own pocket–and pointed out that an hour of physical therapy that was of lesser benefit to me costs $200/hour. So twelve PT sessions would equal the cost of the lift, and I would have year–round therapy conveniently at my home for years to come. After numerous letters and three appeals, I was scheduled for a meeting with their Board. At the meeting, I had aquatic therapy documentation and representation from my doctor, the MS Society, and family members.

It was finally approved with the caveat that this was clearly an exception and it won’t happen again. Bottom line? We both won. I’ve used my pool for MS therapy an average of 120 times/year over the past thirteen years at my convenience and they saved a lot of bucks. At $200/hr. (probably more now), that equates to $312,000 of PT!!

This year, I won an appeal for a $1200 elevator lift on a new power chair. The lift was considered a luxury add-on, even though as a petite 5’3” person sitting, I couldn’t reach so many things in my house (like the stove and dryer knobs).

Small potatoes for them; big potatoes for me.

There is no question that we all need medical insurance today whether you have an existing medical problem or need protection from a possible future health problem. The exorbitant costs could leave an uninsured person bankrupt and out on the street in no time. With the baby-boomer population aging, our health care will be in real trouble if consumers don’t get involved.

Counting on our self-serving politicians and squabbling Congress won’t get the job done. But we can. Remember the Civil Rights Movement and the Women’s Suffrage Movement?

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

The Optimist and the Pessimist

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“Attitude is Everything”

August 6, 2014

I am an optimist. My husband is a pessimist. If I say “wow, the sky is so blue”, he’ll say “I hate the sun, I like it cloudy.”

They say opposites attract but sometimes I don’t know how I have survived 36 years of marriage with a person who is a pessimist.

My husband and I just got back from a mini camping trip in our RV and truthfully, it really was frustrating. It rained constantly for almost the entire trip, so we were confined to stay in the RV. For me, it was cozy listening to the rain while reading a novel and watching movies. For him, he seemed to complain about everything and didn’t even want to play cards with me.

After being in this situation, I started writing a post about why the need to vent from time to time is essential to your health. This morning I was going to finish it when I came across this article about optimism and pessimism in the newspaper. I felt like it was written for me.

This article is so important, I once again decided to postpone my post-in-process and share this. Not only is optimism necessary to survive life, it is necessary to survive MS. Pessimistic people drag you down, something that is not good if you are trying to cope with a chronic illness.

Optimism trumps pessimism in workplace, life

President Harry S. Truman once said, “A pessimist is one who makes difficulties of his opportunities, and an optimist is one who makes opportunities of his difficulties.”

Which do you think will reach their goals, live a happy life and achieve their dreams?

Imagine interviewing two people who have identical skills, but one is always grumbling about how unfair life can be, while the other one talks about what wonderful possibilities exist.

Naturally, you would gravitate toward the optimist. If you choose the pessimist, you would be setting yourself up for plenty of aggravation and disappointment, not to mention the negative impact on your staff and customers. Pessimism can bring everyone down, not just the person with the negative attitude.

Pessimism is nothing more than self-sabotage. Expecting only the worst is not being realistic. Realists hope for the best but prepare for the worst. Pessimists can’t imagine the best, so they prepare for the worst. And then if the worst never happens? Pessimists often find the worst possible result simply to prove that their concerns were right.

The question becomes, would you rather be right than be happy? That’s not being realistic, either. That’s being self-defeating. Pessimism can rob you of your energy, sap you of your strength and drain you of your dreams.

Optimism is the remedy. Optimism doesn’t mean pre¬tending life is always wonderful. Optimism means embracing reality. You accept that there will be bad days, but also good days. When you’re grounded in reality, you know where you are and how far you need to go. Once you know how far your goal may be from where you are, optimism can give you the motivation to make plans to get to where you want to go.

Pessimists see life as one problem after another. Optimists see life as one opportunity after another.

How you look at life can drastically affect how much you enjoy your life. Optimists expect the best out of life.

Does it make sense that pessimists tend to blame others or circumstances for their failures?

Optimists help create some of the good they come to expect, so they are probably right more often than not — and they don’t waste time worrying about what they’re not right about. Optimism relaxes people. When we’re relaxed, there is better blood flow to the brain, which results in more energy and creativity in your life.

There is virtually nothing that you can’t do if you set your mind to it. You cannot control events in your life, but you can control how you react.

Do you want to be a pessimist and have no hope for a better future? Or would you rather be an optimist and believe you can achieve a better future?

Mackay’s Moral: Attitude is the mind’s paintbrush — it can color any situation.

Harvey Mackay is the author of the New York Times best-seller “Swim With the Sharks Without Being Eaten Alive.” He can be reached through his website, harveymackay.com, or by e-mailing harvey@mackay.com.

In my situation, I learned years ago how to ignore or escape my husband’s negativity. While I succeeded most of the time, the times that I couldn’t get away from it caused tremendous stress. Not only did the stress impact my MS symptoms negatively, it would make me moody and stifle my motivation to move forward. Fortunately, I am a strong-willed person and almost always found alternative sources of optimism (e.g. friends, enjoyable interests/activities…) to lift me up before I got dragged into the depths of an abyss.

Now, in all fairness, my husband is a great guy and has many positive attributes. None of us is perfect. I am a sensitive person who cries easily or pouts. Personality traits are difficult to change; a person has to recognize a change needs to be made and then take great effort to make the changes. But this is a slow process that requires much patience.

If you don’t live with a pessimistic person, it’s easy to get away from him/her. An optimist living with a pessimist will be a lethal combination if coping mechanisms can’t be accomplished.

I know from experience. And I know that one of main reasons I have survived managing my MS is because I am an optimist. Attitude is everything.

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

Use Numbers to Increase MS Public Awareness

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“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

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“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

 

 

 

Positivity: Essential For Our Health & Happiness

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“How to Embrace It”

July 16, 2013

Having a positive perspective in life is critical to both our health and happiness.

Earlier this year I came across an article by Renie Cavallari, CEO and Chief inspirational officer of Aspire Marketing and Training, and saved it. Recently I went through a negative spell, and re-reading this article helped me re-focus and turn my attitude positive again. Since her article is so good, I decided to take direct excerpts from it to share with others:

“Nothing positive comes from negativity. How you choose to see the world is how you experience it. You feel the way you think and your thoughts reflect your actions.

As a human being, you can control how you feel. You can choose to take any situation and consider it from a positive perspective. This is not to say that when you feel bad or sad, you should deny your feelings. What you can do is decide how you will allow the people and events of your life to affect your world.

Things happen that are disappointing, upsetting or overwhelming. This is when you have to conscientiously change your perspective so you can get to a more productive mental space. You cannot change the events of your life. You can change how you experience them.

Here are a few tips:

• Ask yourself, “What is right or good about this situation?” Avoid the negative narrative and find what is helpful.

• When your energy is low, this is the first sign that you want to get some exercise. Exercise actually “turns on” our energy and has a way of giving our negative thoughts and feelings a place to release. Just take a walk, breathe in, pick up your pace and burn off the negative energy.

• Who you hang out with is who you become. Some people just give off negative energy; this is why we feel so exhausted around them. When disappointments happen, you want positive and supportive people in your world. Fire the naysayers. They are not helpful and only hold you back.

• Sometimes embracing the humor of a situation helps. Ask yourself, “What about this situation will be funny in a year? Or maybe five years?

• Move to solutions. Many times we think about what is wrong vs. what we can do next. If you stay in a place of a problem (what is wrong), you end up feeling negative and stuck.

When you start planning what you are going to do, you begin to feel empowered and in control; you start moving toward what you want. This forward momentum creates more positive energy and gets you where you want to go.

Your energy determines how you feel and experience your life. Positivity is the fuel for happiness.”

Thank you, Renie!

www.DebbieMS.com

Does the Doctor Really Know What’s Best for You?

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“It’s your choice.”

June 18, 2013

I have seen doctors for almost all of the forty years of my adult life, and this is what I learned:

While I need to have doctors in my life as I deal with MS, I ultimately know what is best for me to do—not my doctors. I know my body and I will always make the final decision relative to how I want to be treated by a doctor. My doctors are there for support, knowledge, prescriptions, consultation and referrals. If I believe I am not getting from a doctor what I (or my insurance) is paying for, I will fire him/her.

It is a viewpoint other older MS veterans have shared with me.

Many MS specialist-neurologists are experts—they have seen numerous patients and are trained with knowledge. But I am an expert too, with a lot of common sense. I have talked with numerous people dealing with MS (both patients and professionals), and constantly research information about my disorder.

Each case of MS is different with regard to disability, rate and duration of relapses/progression, symptoms, response to medications and treatments, etc. It is a fact that that no two cases are alike. I believe I know my body best in terms of how I feel and how my body acts/reacts; this is information that I must note and share with my doctor.

I live with MS, monitoring and documenting many things regarding my own case, 24/7 every day–symptoms, side effects, triggers… A doctor looks at my case and evaluates me for only about fifteen minutes every 6-12 months. As one recent MSer complained to me, “I just wish a doctor would listen to my symptoms and not just do their little neurological test of pinch here, pock here and say nothing wrong here. This sucks.”

Recently, I spoke with a person with MS who was complaining how bad MS had been affecting her cognitive abilities. During the discussion, I learned the doctor prescribed her a sleeping pill, an anxiety pill, and a pain pill—all at the same time!! It was no wonder why her mental faculties were impaired. Where’s the common sense here?

Other patients receive scripts to treat two or three things at one time with no instruction to start them at different intervals. How would someone know what is affecting what, positively or negatively?

Since I am not on a DMD treatment, I choose not to get MRI’s. Personally, I don’t care how many lesions I have or how big they are because that by itself isn’t always reliable in terms of what to take, do, or how bad I am. For me, going for an MRI every six months is a waste of my time and money. But that is my choice and my decision.

And doctors are not always right. Doctors make mistakes or poor decisions as well. Maybe they are having a bad day, are overloaded, or were given faulty test results. Let’s face it—why do people get second or even third opinions before having major surgery, for example?

Truthfully, I like, need and want my doctors. Doctors have things I don’t have–the ability to write prescriptions, order tests for evaluation, and referrals for things like therapy or specialists. I use them to get these things. Also, I really do want to listen to their expertise and judgment, and consult with them about any course of action.

Now I do not have major cognitive issues that interfere with my judgment. But there have been times when I was distraught with anxiety or depression and I felt I didn’t want to make a decision alone. I asked the doctor if he was in my shoes, “What would you do?” I have enough trust in my primary professionals to follow their advice. In these situations, I also have a close family member or friend with me to listen and help evaluate the circumstances. Teamwork is good.

When I choose a doctor, I find one that has very high ratings and one that I am compatible with. It enhances my confidence when I make my final decision about a course of action.

I have been blessed to have two MS specialist-neurologists in two different states that were both opened-minded and respected my personal choices. They talked with me, not at me or down to me. They also recognize that I am the one living with MS and know my body best. However, “Two heads are always better than one” when evaluating anything, so I am open minded as well. And throughout the years, there were certainly good reasons to see and confer with my doctors.

So choose your doctor and your course of action wisely.

www.DebbieMS.com

 

Are Cognitive Problems Blamed Too Much on MS?

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“What to Know—What to Do”

June 4, 2013

MS has many misconceptions associated with it, and cognitive impairment may be one of them. Lately, it seems that I read and hear more and more about how MS is the cause for memory issues that MSers experience–it is gaining a reputation for brain dysfunctioning. And along with the increased reputation comes the increased fear.

Although MS can cause cognitive issues, it is important to know that they are NOT the most typical symptoms of MS. It is estimated that 40-50% of people with MS experience mild to moderate impairment; severe cognitive decline like dementia are extremely rare (source: MSIF.org).

What are these impairments? Things such as:

• Long-term concentration; inattention; distraction
• Forgetfulness
• Planning or problem solving difficulties
• Loss in thought processes; word finding
• Not thinking quickly or clearly; “brain fog”

BUT, these types of difficulties can also be the result of other factors such as age, hormones, menopause, overload, stress, drugs, fatigue, depression and lack of sleep. For example, up to two-thirds of women report forgetfulness and other mental disturbances during hormonal shifts of menopause! So, maybe that 40-50% estimate is really lower in reality.

There is something called neuropsychological testing, and more people in the MS community are talking about them. These tests were designed to measure cognitive difficulties. However, unlike some other areas of measurement, with these tests 1) there is no single test that measures everything that the brain does, and 2) there are wide variations in how/what types of tests are done and their conclusions. Furthermore, the testing can be strenuous and expensive.

In the end, does knowing the test details make much difference in one’s life? Doesn’t it make more sense to learn about these cognitive difficulties and what can be one done to overcome them?

What to Do and Why

• Exercise your brain. Practice brain games, crossword puzzles, and memory exercises that stress verbal skills.

• Enrich your diet with plenty of omega-3 fats, low-glycemic index carbohydrates (e.g., whole grains) and antioxidants. Walnuts and fish high in omega-3 fatty acids (including sardines and salmon) fight artery-damaging inflammation. Antioxidants raise acetylcholine, which is an essential neurotransmitter for memory. Berries, especially blueberries, are loaded with anthocyanins – potent antioxidants that protect cells, including those in the brain. Blueberries may also have the power to create new pathways for connection in the brain.

• Eat several smaller meals throughout the day. Eating small meals prevents dips in blood glucose levels, and glucose is the primary energy source for the brain.

• Take walks daily and do stretching exercises. Increased cardio can make your brain actually grow, with more white matter and more neuron connections.

• Do stretching/relaxation exercises and meditation to reduce anxiety and stress. Stress causes the body to release cortisol. Cortisol—the body’s stress hormone– has been found to shrink the memory/learning centers in the brain, which results in impaired memory.

• Make sure your body is getting enough iron. Iron helps the neurotransmitters essential to memory function properly.

• Make sure you are getting enough sleep. Anyone who’s ever stayed up all night recognizes that next-day brain fuzziness, when it seems like nothing really registers or is available for recall later. That is what’s happening. Different parts of the brain are responsible for creating different types of memories – a face, a name, or just the recollection that you met someone. Sleep is also needed to make long-term memories last.

• Focus on one task at a time to keep a recollection of each one. When you do multiple tasks, the brain switches processing to another region that retains fewer details. For example, listening to the news while reading something will impair your ability to recall either later.

• Check your cholesterol. The plaque buildup can block the blood vessels in your brain, deprive it of valuable nutrients, and cue memory problems.

• Keep thin or lose weight. The brains of obese people work harder than those of normal weight people to achieve the same results, according to researchers at Carnegie Mellon University. High blood pressure and inflammation—both of which strike obese people hard–irritate the brain’s communication networks, making it more difficult for the brain to receive messages.

• Many prescription drugs can affect your memory, and the older you are, the longer drugs stay in your system. Drugs that can cause memory lapses include antidepressants, anti-anxiety drugs, beta-blockers, sleeping pills, painkillers, antihistamines, and statins.

Easy Memory Tricks

1. Repeat yourself. To help get a routine activity lodged in your brain, say it out loud as you do it. “I’m getting the stamps” – fends off distraction as you go to get them. You may sound crazy, but rehearsal is one of the best tricks for memory. Memory experts also advise that you repeat a person’s name as you are introduced.

2. Bite off bigger pieces. Since your brain can process only so much information at a time, try chunking bits together. By repeating a phone number as “thirty-eight, twenty-seven” instead of “3, 8, 2, 7,” you only have to remember two numbers, not four.

3. Give words more meaning. When you’re introduced – let’s say to Elton – connect the name to someone (“Elton John”), a place, etc. Or you can use rhymes—“Dennis plays tennis.”

4. Create unlikely connections. For example, switching a watch to the other wrist when you need to remember something. The oddity of not finding the watch where it should be triggers recall.

5. Practice paying attention. What was your neighbor wearing this morning? Even if you’ll never need the information, forcing yourself to observe and recall the details of your day sharpens your memory.

6. Do something mentally challenging. Working a crossword puzzle, or learning an instrument or foreign language creates fresh connections in the brain. It can actually generate new cells in the brain’s hippocampus (i.e. the brain’s learning/memory center). Those new cells build cognitive reserves that are important for creating new memories and may protect against memory loss – even dementia – later in life. A timed game like Boggle or Simon will force you to pay attention, work quickly, and think flexibly.

In summary, if a MSer is experiencing some type of cognitive problem, it may be prudent to initially think through the possible causes and try commonsense solutions to improve it.
www.DebbieMS.com
Author/MS Counselor/Living with MS

MS: Disease Modifying Drug Therapies

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“Questions and Concerns”

April 5, 2013

On March 27, a news article stated “The U.S. Food and Drug Administration has approved Tecfidera™ capsules (dimethyl fumarate, Biogen Idec –formerly “BG-12”) as a first-line disease-modifying therapy for people with relapsing forms of MS.”

This is the tenth DMD (Disease Modifying Drug) that has been approved by the FDA to reduce the progression and activity of the disease. It is also the third DMD approved in the past two years that can be taken orally in lieu of an injection, exciting many persons who have MS.

The National MS Society and most neurologists, are strong proponents of these DMD’s, and recommend starting one as soon as a diagnosis is made. “Taking a disease-modifying therapy is currently the best way to reduce MS disease activity and future deterioration,” states an article on the internet front page of the National MS Society today.

Is it the best course of action to take for everyone? Here is a list of questions/concerns to think about when deciding whether to use a disease modifying drug:

1. Is it wise to start a treatment that was just FDA approved (or just approved in the past couple of years), without knowing the long-term side effects?

• None of the DMD’s decrease the relapses 100%; most decrease them in the 28-68% range. Is this enough to justify the possible long-term effects of possible liver, kidney or heart damage? Built up resistance? Other serious health implications? What if the person is only a teen or very young and has decades of life ahead of them?

• The biggest fear of having MS is the loss of mobility, although there are numerous other symptoms of MS that are disturbing. This fear is exemplified by slogans, ads, pictures and more. Yet, for years the statistics estimated that 25% of MS patients end up using a wheelchair during their life. After living with MS for 32 years, I am one of those people in a wheelchair. Maybe this sounds stupid to someone, but I personally feel that I would rather manage living in a wheelchair than with a damaged liver.

• What happens if the DMD is found to not work after all? News came last July that an extensive study suggests interferons, the basis for many DMD’s, did not reduce MS progression. This news was alarming. “Can this be true?–after all those years of injections, tests, office visits, side effects, dollars spent….” were comments expressed in social media.

Within the above-mentioned article, Bruce A. Cohen, MD, Professor, Davee Department of Neurology and Clinical Neurosciences at Northwestern University’s Feinberg School of Medicine, and Chair of the National MS Society’s National Medical Advisory Committee states “As with all newly-approved treatments, we will learn more about the benefits and safety of Tecfidera over time.” Hmmm—does this comment concern you?

2. Does the decreased rate of 28-68% of possible reduced relapses warrant the short-term side effects and other things people experience with DMD treatment?

• Yes, treatments do have side effects, and again they vary widely for each individual. Nausea, flu-type symptoms, dizziness, site-injection soreness and fatigue are some but not all common complaints. One has to ask and decide for him/herself if the treatment is worth it; for example, feeling like you have the flu 1-2 days a week after an injection. Or putting it another way, which is the lesser of two evils? In addition, I hear and read so often in social media about how frequently MSers change their DMD because of the side effects, or that it is not working in slowing the progression.

• DMD’s require much monitoring–doctor visits, MRI’s, clinic visits… The therapy adds more cost, are time-consuming and exhausting. Fatigue—a very disabling symptom 90% of MSers experience—is compounded.

• Taking a DMD is a difficult regime. It adds physical, emotional and mental stress on the body. These could lead to depression, and more fatigue. It is possible that the stress of taking a DMD could nullify any possible benefit of it for some people.

• Treatments are expensive. The price tag on this new treatment is $55-60,000! While some patients get financial assistance through the drug companies or being a clinical trial participant, many others pay thousands of dollars annually out-of-pocket. I’m becoming quite cynical of pharmaceutical companies when I see their expensive ads, exhibits and give-aways at events.

3. Should a newly-diagnosed person start a treatment without first evaluating how aggressive or mild their disease course is?

• Up until 1996, a type of MS included a “benign” course. Up to 20% of MS patients had this type of relapsing-remitting, in which few relapses occurred that would go away and leave very little or no residual damage or disability. Symptoms were primarily sensory, but could include others such as motor or bladder disturbances. The term is no longer used, and this type is now included with the relapsing remitting type.

The point is that many persons diagnosed with MS could have a mild case, and how would they know if they started a treatment immediately after diagnosis? In addition, a newly-diagnosed person is usually quite stressed and often prescribed other drugs to relieve symptoms or the relapse. The waters become muddy in knowing what is causing what, positively or negatively, when everything is happening at the same time.

• A newly-diagnosed person should take notes and keep a journal about their symptoms, reactions to any drugs given for a symptom or a relapse, etc. to learn about their own case of MS. Delaying a treatment of several months will make little difference in the overall course of the MS. Not taking care of oneself, feeling pressured by doctors/others, and chronic stress can affect the MS as much as not taking a DMD.

• Meantime, research the studies thoroughly about a drug before going on one. Do it from a variety of sources. Carefully evaluate the studies behind the drug—number of people involved, length of the study, type of study, etc. Use common sense, and remember that this is your body and ultimately your personal decision.

4. To expand on #3 above, has both the doctor and the person with MS evaluated his/her course for a reasonable period of time before starting a DMD?

• Each person with MS has a different course of progression, relapses and symptoms. No two cases are alike. Patterns of these factors will emerge after awhile. What are the frequency, severity, duration and residual of a relapse? Is the relapse being defined properly? MS is sensitive to many things, and several days or even a week of intensified symptoms does not necessarily indicate a relapse.

• The number and location of lesions being used as the sole indicator of disease progression can be leading. New and old lesions cannot always be distinguished and lesions showing on one MRI may not appear on the next one.

5. Do doctors honestly know if a slowing of progression is from a DMD? Couldn’t less lesions result from the natural course of the disease itself or any health/wellness program a patient is following?

• The truth is, DMD’s are difficult to monitor accurately. And it is worthwhile to note that DMD’s are not meant to make a person feel better.

6. Why isn’t there more emphasis on managing MS from a non-medicinal standpoint? Why are drugs pushed as the first line of defense?

• Since there currently is no cure for MS, the objective is to reduce the amount and severity of relapses to prevent further damage to the central nervous system until a cure is found. It is common sense that a comprehensive therapeutic approach should be taken to treat MS.

• There is no single drug to make MS go away. While drugs play an important role in helping symptoms, relapses and the course of MS, there are so many non-medicinal things a person can do to both manage and control it as well without side effects. Examples include:

– Taking care of oneself with proper diet, exercise, sleep, low stress…
– Not getting sick or infections since MS is an autoimmune disorder.
– Alternative therapies, such as Yoga, Pilates, Tai Chi, massage…

There are many MSers who use this approach successfully to manage their MS, while taking drugs for symptom relief or relapse treatment (corticosteroids) as needed.

Sure, I want a cure or an effective treatment just as much as the next person, but I have always weighed my options carefully. I’m only 57 and I have many of years ahead of me. So I have to make sure I do my research and ask questions in order to make the right choices. Shouldn’t everyone?

www.DebbieMS.com

Diagnosing Multiple Sclerosis

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      “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