Where and How to get Your MS Information

                                                  “Tips and Cautions”

The upside of the internet and social media is that mounds of information about MS are available immediately with the stroke of a few keys and searches. Folks need as much knowledge that they can get to help them understand and handle this complicated disease.

The downside of the net–besides being overwhelming–is that one has to be very careful with the validity of the source and information of what is read. I read discussions between MSers on Facebook, other social media, and MS Association sites and am concerned by how much info is misleading, incorrect, and cause for fear. Bad information causes bad decisions.

1. Understand which treatments/drugs help symptom improvement.

While it is gratifying that DMTs (Disease-Modifying Therapies) are reducing relapses for many MSers, participants in some discussions talk about how their symptoms improved when they were taking a certain DMT.

This is not true. Here is what one MS specialist-neurologist stated:

“The disease modifying medications do not directly help with symptoms in MS. 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.”(see Source #1 below)

Now, there ARE drugs to directly and successfully treat symptoms (e.g. depression, bladder incontinence…), and relapses (e.g. steroids). These often improve symptoms and help a patient feel better, but not alter the disease course or direction of the disease itself.

2. No treatment exists today that will stop the disease activity/progression and damage completely, or reverses it. (see Source #2 below)

Recently, I followed a discussion on FB about stem cell treatments that miraculously accomplished this for them.  Most of the participants that had the procedure were diagnosed within the past two-three years. These participates probably did not know their personal pattern of relapses; it’s not uncommon to lose one’s sight or have impaired mobility for a long stretch of time in their initial relapses. Their recovery was more likely due to the relapse being over and they’re being back into remission with little residual, which is very common in the early years of the disease.

Furthermore, it takes a while for a patient to understand their own case of MS and how their body responds to a variety of things—both medicinal and non-medicinal. Nowadays, it is even more difficult since a newly-diagnosed person during their first couple of years are receiving DMTs and drugs for relapses and symptoms all at the same time. What is doing what?

3. Be careful with reading statistics, study results, etc.

I worked a number of years in my professional jobs doing financial analyses and market research. One of the things I know from that experience is that conclusions of studies can be misleading by what numbers are used and how numbers are presented. I’ve become quite the cynic about this.

For example, one might read “according this study, 50% of patients using XYZ showed a 38% reduction in…” How many people were used in the study, what were their characteristics, how long did they take XYZ, what were their side effects, who did the study, etc. You have to dig deeper, be cautious, use common sense and talk to your professionals when you hear something of interest and want to pursue it (like trying a new medication).

How would you feel if you discovered that a study was based on eight people?

4. When gathering information, consider the following:

• Use common sense and logic.
• If something sounds too good to be true, it probably is.
• Listen to your gut, not what you want to hear.
• There is no cure, and if something says you will be cured, throw it away. You can manage MS and even control it in many ways, but there is no cure yet.

5. What are good Sources of Information?

MS associations and Pharmas are good sources of information that can be trusted for acquiring basic MS knowledge about the disease itself, the symptoms, current research/events that are happening, and treatments that are available. They also can be helpful in providing programs and forums for people dealing with MS to get together and interact.

Where to use caution?

• When listening/reading information that MS associations, Pharmas, and neurologists present statistical information about study/treatment results. They all recommend DMTs as the first line of defense, and one has to be careful of taking this information at face value. Re-read #3 above, and know that numbers/statistics can be arranged to project just about anything. Dig deeper into what you are told. You may be surprised.

For example, a current starting point to get specific data on DMT’s is Source #2 below. And read closely. On Page 13, the colleagues point out that 50% of persons diagnosed will have “benign MS”. People with benign MS will have an Expanded Disability Status Score (EDSS)<3 after 10 years.  After 20 years they found while 51% remained benign, 21% had progressed to EDSS >6 and 23% had converted to SPMS.

The point? Stats like these could help a patient weigh their options more carefully.

• A standard line of advice is “consult with your doctor.” Do you trust your doctor? How experienced is your doctor with MS? Does your doctor listen to you and talk with you, respect your questions and doubts? If the answer is no to any of these, it’s a red flag. Remember that doctors get kickbacks, and truthfully are limited to prescribing drugs and giving referrals. Get second and even third opinions.

• Social media sites are wonderful for sharing information and feelings with other peers, but remember that two-thirds of effective communication is through body language. There is no eye contact, no voice to hear, etc. that can make judgment of people difficult. Learn the background of the people you engage with. If reading an MS blog, make sure it is a credible, respected and experienced person that is doing the writing.

Here is a link to my Resources/Links page on my website that is quite comprehensive, not overwhelming, and judged by many to be trusted http://debbiems.com/links-resources_271.html . (You can check out my background, experience and credentials in other sections of my site.)

(Sources)
#1 The NPR Diane Rehm Show (9/24/2012) 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.

#2 The Use of Disease-Modifying Therapies in Multiple Sclerosis: Principles and Current Evidence http://bit.ly/1oEnTqY  September, 2012

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

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What MSers Really Need from Others

“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

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The Truth about MS and Wheelchairs

“My Personal Insights”

If you asked anyone “What do you think of when you hear the term MS?” the answer usually includes “wheelchairs.”

When my first relapse happened back in 1980, a picture of a person with MS in a wheelchair was always shown, even by the MS Society. Perhaps it was to help with fundraising, or perhaps it was to a way to draw attention to a disease that was not usually heard of.

Whatever the case, it did create a picture of “this is MS” and the huge fear of living a life in a wheelchair. That vision still exists today, despite the advances in awareness and research that have occurred. Despite the reality that MS involves many other neurological symptoms in addition to a life in a wheelchair.

I know much about this because I am one of those MSers who ended up in a wheelchair. And I want to speak up about MS and wheelchairs to try to correct that picture and reduce that fear for anyone dealing with MS.

1. Over a lifetime, only 20-25% end up in a wheelchair. That was the statistic in 1980, and it probably is less today due to the development of the disease-modifying drugs that have been available since the mid-90’s.

I have many friends who have had MS over 30 years, and I am the one of a few who is in a wheelchair permanently. Now, of course many patients use walkers or canes since MS and mobility problems usually go hand-in-hand, but few are not hunched over paralyzed, completely debilitated in a wheelchair.

2. A person can have a quality life living in a wheelchair, though admittedly the limitations it causes can be frustrating. Again, I know.

I manage my MS well and despite having lived permanently in a wheelchair these past thirteen years, I have had a happy life. I travel, swim, volunteer, take care of many household responsibilities… And the other MSers I know who are in my position would agree their lives are full and active.

Having MS certainly is not a cakewalk, but it certainly isn’t the end of the world either. There are far worse things in life. Plus, I must add that there are other MS symptoms that can be difficult, such as vision loss and overwhelming fatigue. However, so many of these symptoms can be successfully managed to minimize their interfering effects.

3. Wheelchairs should be viewed as a friend, not the enemy. So, you ask, what the heck does THAT mean? I’ll explain.

At many MS events and online, I see and hear people with mobility issues struggling with trying to walk without a walking aid, or one that is not suitable for them. Part of it is due to vanity, or part of it is a desire to not “give in” to MS.

• Is vanity worth the risk of falling down and getting hurt? In truth, I purposely started using a wheelchair full-time even though I could walk with a walker for 15-30 steps. The years on steroids, the osteoporosis, and my age put me at great risk for breaking an arm or leg. Instead, I used the swimming pool to walk and exercise safely.

• Before I went into the chair permanently, I used a power chair on a part-time basis around the house and scooters that were available in stores for customers. It is a tremendous help in reducing fatigue and getting more things done. This was a great morale booster. In addition, the pain from overused muscles and poor posture was lessoned substantially.

I wasn’t giving into my MS at all. There are many persons with MS that will use a scooter or wheelchair because of fatigue, weakness, balance problems, or to assist with conserving energy.

4. The majority of people with MS do not become severely disabled. Three out of four people who have MS remain able to walk, though many will need an aid, such as a cane or crutches.*

Before I decided to post this article, I talked to a couple of good friends of mine to ask them about the content of this article. They, like me, are the “Ol’ MS Vets”, i.e. who have lived with MS for decades and also have been involved with the MS community for the same amount of time. We know this disease because we have lived with it and been continuously involved with its research. 

We are a reliable resource you can trust.

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

*Note: This statistic is listed in many reputable resources. The Nat’l MS Society used to use this percentage until several years ago, but changed it to 35% based on some study. I question their revision, as well as the study, because with the numerous DMDs that have been/are available, the percentage of MSers in wheelchairs permanently should have declined, not increased.

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Insurance Companies, Health Care Costs, and the Chronically ill

“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

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The Optimist and the Pessimist

“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

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Important Things Others Should Know about Chronically ill People

“An Educating Tool”

I was in the middle of writing a blog about what folks with MS really need from others when I came across this pin I found on Pinterest. What an extraordinary pin to share with my peers!

Because I still look so good after all these years and rarely complain, people around me sometimes still don’t seem to understand my difficulties since MS is invisible, unpredictable, and interfering. And it is probably because I am so good at the way I manage this disease, despite the fact that I use a wheelchair. I make it look so easy, when the truth is, it can be a real bitch.

For people who are just learning about how to live with a person with MS or who is chronically ill, a copy of this will be a good, educating tool.

“People with chronic pain and illness want everyone in their lives
to know these important things about them…”


1. Don’t be upset if I seem on edge. I do the best I can every day to be “normal”. I’m exhausted and sometimes I snap.

2. I find it very hard to concentrate at time for a lot reasons. Pain, drugs, lack of sleep… I’m sorry if I lose focus.

3. Letting my loved ones and friends down by cancelling plans is heartbreaking to me. I want more than anything to be as active as you and do the things I used to do.

4. My health can change daily. Sometimes hourly. There are a lot of reasons this happens. Weather, stress, flare-ups…I can assure you that I hate it as much as you do.

5. I don’t like to whine. I don’t like to complain. Sometimes I just need to vent. When this happens, I am not asking for pity or attention. I just need an ear to bend and a hand to hold.

6. During rough times, I find it hard to describe how bad it is. When I say “I’m fine” and you know I am not, it’s okay to ask questions. Just be prepared if the flood gates open because “I’m fine” is often code for “I’m trying to hold it together, but having a rough time. I’m on the edge.”

7. If I am hurting bad enough to tell you about it without being asked, please know that it’s REALLY bad.

8. When you reach out to me with suggestions to help me feel better, I know that you mean well. If it was as simple as popping a new pill, eating differently or trying a different doctor, I’ve most likely already tried it and was disappointed.

9. All I truly want from you is friendship, love, support and understanding. It means everything to me.

10. When someone gives me a pep talk, I understand the sentiment. Chronic illness just doesn’t go away. I wish it did, too! I appreciate your wanting the best for me, but save the pep talk for the gym or the kids’ next volleyball game.

11. It hurts worse than you can possibly imagine when I’m thought of as lazy, unreliable, or selfish. Nothing is further from the truth.

12. I do a lot of silly things to distract myself because any part of my life not consumed with pain is a good part.

13. The simplest tasks can completely drain me. Please know that I do the best I can every day with what I have.

14. Come to me with any questions you may have about my condition. I love you and would much rather tell you about this face to face without judgment.

After all these years I have lived with MS, I may put this on my refrigerator at times; or give a copy of this to the forgetful numbskull or the insensitive ostrich that has their head in the sand! (Yes, I think we all have a person or two like this in our lives.) And, the next time someone says “What’s wrong with you?!” I think I will tell them to read #___.

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

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Making Decisions when Managing MS

In many online MS discussion groups, participants discuss what is the best thing to do or take for MS, and what is “bunk.” Subjects range from treatments, diet, and stress to exercise, experimental drugs and alternative medicine.

If one seeks information from MS organizations or medical websites, the standard directive is “ask your doctor.” But realistically, if you ask your doctor, most will recommend drugs. Drugs for symptoms, for relapses, and long-term DMD treatments. There are two reasons for this:

1. What else can they do for you in the fifteen minutes that they see you? They can’t cure you but they will want to make you feel better and try to prevent you from getting worse. In addition, doctors certainly don’t have the time to educate you or answer a lot of questions. They will refer you instead to physical/occupational therapy, pain clinics, etc.

2. Relative to prescribing drugs, doctors depend on the scientific evidence of these substances. They will send you off with scripts for tests initially and ongoing. Relative to body wellness for MS, while they would agree that exercise and proper diet is good for you, they will not specifically address these topics because there has not been enough scientific evidence done to determine their positive/negative impact on MS. So again, the patient is referred elsewhere.

Everyone’s body and MS are unique, and everyone responds differently to anything you take or do to your body. No two cases are alike in response to these actions just like no two cases of MS are alike. While some things work for some, often they don’t work for others.

So, when you need to make a decision regarding something about your MS and are stuck, what should you do?

Personally, I practice common-sense, logic, and balance for both my body’s wellness and medications I choose to use. I ask myself these questions:

• Does it make me feel better?

• What are the short/long term risks of doing or not doing something?

• Do the benefits outweigh the risks that I am willing to take?

• Am I doing everything I can possibly do to prevent infections, sickness, falls…?

• Did I gather enough research from reliable sources to help me make my decision?

There is no question that proper diet, exercise, sleep, stress management, weight control, etc. are essential for vital body functions and helping to manage/control MS. This is true for a person without MS, but especially important for a MS patient to help managing/controlling their disease.

I am open-minded and listen to others in online discussions as part of my personal research for making my own decisions about managing my MS. I dig through the internet for studies and statistics. And I consult with doctors and other health care professionals for their insights; but a health professional is not my only source of action or fact-finding, giving him/her a carte blanche.

Then I document and keep journals of what I do and what the effects are.

There are no absolute rights or wrongs. I know my body well, but I leave myself open to trying something new if I feel it is safe and I have nothing to lose by trying. Like everyone else with MS, I want to feel better and get better.

One rule I follow for myself with regard to making any decisions about anything: “When in doubt—don’t!” I can always revisit the situation later.

Ultimately, decisions are made by me. I only have one body and am the one who has to live with it.

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

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Use Numbers to Increase MS Public Awareness

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

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

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

What kind of numbers and what could be done?

1. Update the number of people who have MS.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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MS Exercises at Home: Diagrams, Tips, and Resources

“Exercise is Essential”
June 11, 2014

There is finally much positive buzz about how essential exercising is for people with MS: Overall health: stress reduction; weight control; improving fatigue (yes!), endurance, strength; improving symptoms like balance & coordination, insomnia–the list is long.

A recent article in Neurology Now magazine states:

Exercise is a struggle for most of us, but more so for those who live with neurologic disabilities and physical limitations. In addition to the usual barriers of motivation and time, people with disabilities face extra challenges such as finding the right equipment and facilities. It’s no surprise then that they are significantly more likely to be sedentary than people without disabilities, increasing their risk of chronic health conditions such as heart disease and diabetes.

“People who have had a stroke or traumatic brain injury or been diagnosed with multiple sclerosis or another chronic neurologic disease get even more debilitated when they sit around,” says Michael J. Reding, M.D., the former director of stroke rehabilitation at Burke Rehabilitation Hospital in White Plains, NY. “Inactivity can make other problems, such as osteoporosis, constipation, and pressure sores, worse. The more mobile and active a person is, the greater their sense of well-being and life satisfaction and the easier it is for caregivers,” Dr. Reding says. http://bit.ly/UsjEqm

In addition, Founder: DaveBexfield, ActiveMSers.org has this to offer: “If folks are interested in the research behind exercise and MS, I’ve collected the abstracts of most of the studies released in the past five years. Virtually all are positive.” http://activemsers.wssnoc.net/tags.php?tag=exercise+study

Nowadays, there is also an overabundance of information available to explain which ones to do and how to do them–most in a piecemeal fashion and often confusing. There are classes offered by places like MS organizations and health clubs to attend. All with the caveat to talk to your health professional first about what is right for you.

But many people with MS would like to do it alone, in the comfort of their home. Often the unpredictability of MS will dictate how long or what types of exercises can be done on a particular day. Transportation, time issues and how you feel when you wake are also realistic obstacles to going out for an exercise program. Let’s face it, sometimes making arrangements, getting dressed and going out can be exhausting even before you get started with a planned exercise activity.

I have four sets of exercise programs with explanations and diagrams that a MSer can do:

• Stretching Exercises
• Balance and Coordination Exercises
• Home Exercise Program
• Lower Extremity Exercises

Here is the link where the “How-To Charts” can be found and viewed http://debbiems.com/links-resources_271.html . If you already exercise, there may be some additional tools in these charts for your arsenal.

The sources of these diagrams are credible, acquired from Banner Hospital and the National MS Society. They were designed by physical therapists for persons with MS. So many of these exercises can be done while sitting at a desk, watching TV, talking on the phone, or standing at the sink; there is no need to set a block of time aside to do a structured regime every day.

Let common sense prevail when starting/maintaining an exercising program. Always start with warm-ups and let your body guide you with regard to length of time, # of repetitions, etc. Start slowly, build up over time, and stop when you start feeling tired, heated, or doing something that causes pain.

The following are some excellent articles to read about Exercising and MS:

1. “Exercising Your Options” (Benefits of Exercise) InforMS: Rocky Mountain MS Ctr. http://bit.ly/SCXbov

2. “Exercise for Everyone” (Creative Ways to Stay Fit) Neurology Now Magazine http://bit.ly/UsjEqm

3. “Keep Moving” (Tips to enjoy favorite summer activities.) NMSS Momentum http://www.momentummagazineonline.com/keep-moving-ms-2/

4. “MS Exercises and Guidelines” http://debbiepetrina.authorsxpress.com/?p=128

If you don’t exercise, it is imperative that you start today! With these how-to diagrams, you can pick and choose what is right for you.

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

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Growing Old with Multiple Sclerosis

“A Double Whammy”
June 5, 2014

It has been awhile since I posted my last blog article. The pace of my postings has slowed over the months. And the pace of everything I do has slowed.

Staring out into my yard one day, the realization really struck me: I’m getting old! Next birthday I’ll be sixty, with over half my life living with MS. It is taking me longer to do things. Napping and resting more each day is necessary. There are many things I cannot do alone anymore and I need to wait for someone to help me. All these things eat up the minutes of my day.

Two things happen when you grow older with MS.

1. Normal people start experiencing many things that a person with MS may have been experiencing already: leaky bladders, less balance and coordination, weakness, fatigue, less strength and endurance, cognitive issues. Aging compounds MS symptoms. Wow—a double whammy. I personally noticed increased fatigue and weakness when I became post menopausal 1 ½ years ago.

2. With MS, it is always tricky trying to figure out what is causing what; is the MS acting up on its own, or is it re-acting to something else. There is substantial interplay between physical, emotional, and mental health. When you grow older, it becomes trickier, since age and hormonal changes (e.g. menopause) affects many things that MS affects. For example, are cognitive problems a new symptom of MS, or is it due to aging?

With regard to #2, I decided, at this point, why care about figuring what is causing what? The focus now should be what can I do to help these things as opposed to asking why is this happening. Like doing mental exercises and adjusting my exercise programs to maintain strength, endurance, etc.

Point number #1 has been a difficult adjustment for me. This year has been quite busy with numerous things. In addition to my regular household responsibilities, I became involved in helping four immediate family members with serious (separate) problems, had out-of-town guests, and did extra MS-related counseling and events—all in addition to trying to maintain my own MS-related issues (doctors, tests, new adaptive equipment, etc.).

My life has always been this way. Busy, helping out, achieving, overcoming obstacles… People depending on me more often than I ever depended on them. And that was okay because that is the type of person I am.

But–

Lately, everything changed. My brain went fuzzy. Motivation to go anywhere or do anything stopped. I didn’t exercise, and lost strength. All I wanted to do was sit or sleep.

My MS symptoms worsened. I was mentally, emotionally, and physically drained from things going on in my life. I’m tired, feel hurt and deflated. Like someone pulled the plug out of me. I didn’t make a conscientious decision to shut things down; my body forced it on me.

Some folks have an easier time “letting things go”, or have financial resources to help get things done around the house. Others, like me, don’t.

The MS in my life has made me grow older faster. Not on the outside—everyone still tells me “how good I look” and not nearly my age. But I feel like I am eighty and my body certainly functions like it. Actually, my body has been functioning like an eighty-year old for at least the last twenty years. So, I guess maybe I’m maybe pushing the century mark?

That’s the downside of getting old with MS. Like an old car, things are wearing out, breaking down and going slower. Lots of dents and bruises. Worn out from all the miles travelled at an age younger than the average normal, healthy person.

But there’s definitely an upside. All those miles travelled with MS and age brings with it a lot of wisdom, strength and experience. As I sat in my yard reflecting on my life, I started making a list of what the upsides of MS are/were for me, and I am sure others as well:

• I’m a survivor and a success. I focused on what I was able to do, not what I couldn’t do. As a mother, teacher, and educated businesswoman I learned to manage my life with MS while sharing and supporting others: my entire family, friends, children, teens, persons living with all types of illnesses/disabilities and the elderly. I did this voluntarily through my daily life—listening, sharing, talking, speaking, writing, letters, phone calls, cards, social media, holding hands and giving hugs. All for free.

The upside? Priceless payback in knowledge, personal growth and problem solving acquired from all the interactions. I have found that so many people who acquired MS are of this same nature. Positive achievers. The irony of getting MS altered my personal life actually for the better in terms of my life’s goals and direction.

• I never took things for granted and always appreciated so many people and things in my life. A sunrise, an outing with a friend, the hand controls in my car, my freedom from living in the U.S… Being wealthy or keeping up with the Joneses didn’t matter. I was satisfied with what I had. MS, or any chronic illness can make you be this way. You don’t lose sight of what really matters in life.

• You can’t recover an opportunity after it is missed or time after it has passed. Whenever possible, I strived to enjoy as many things as I could. One never knows what the future holds or how fragile life can be. Having MS or another major health issue will do that to you.

Life can turn on a dime, as the saying goes. My awesome sixteen-year old nephew was in an accident and was brain dead for twelve days before he passed. My dad died of a heart attack in 1972 at age 45 when I was seventeen. An acquaintance of mine fell out of a tree and became a quadriplegic in his forties. I lost one of my best friends of cancer at the age of forty-nine. My husband and I were caretakers for his bedbound and blind grandmother for fifteen years. The list goes on…

• Living with MS taught me how to take care of body and protect it. Eating, sleeping and exercising properly. Using walking aids. Maintaining good health and avoiding drugs, smoking, and taking huge risks. I paid attention to my body. When I was 32, I took quick action for a weird-looking mole on my back, only to find out that I had malignant melanoma and would have died six months later otherwise.

My internist jokes that I am healthier than most people he sees all day! I got results back today on thorough blood work, and everything was normal. (Too bad my sensory and motor functions are a MeSs!)

• I have the virtues of patience, empathy, compassion. I became a whiz with commonsense, logic and communications. I fight for what is right and what I am entitled to.

• I am an expert in managing MS. Though MS took control of my life at times, I knew how to get back in control.

I recently called an old friend of mine whose husband died unexpectedly last month. She has had MS over thirty years, is seventy years old and her hubby was her loving caretaker. Being a fellow old veteran MS buddy of mine for 25 years, I wanted to check in on her now that all of the memorial activities have ceased and the reality of her new situation has begun.

We talked about her present position and future plans, about MS, and so many other things. There are quite a few things I would like to share about our conversation that I believe is worthy for someone with or without MS at any age to think about.

• It’s essential to have a solid network of friends and family. You just never know if your caretaker will pass or leave you. “J” is ambulatory, but she does have her limitations in other ways because of MS. J has no children. Though dependent on her husband whom she had a loving relationship with, she maintained her independence as much as possible. One of my favorite expressions is “Use your mouth and your intelligence”, and J does that. Her wonderful circle of support helped her with the memorial and the aftermath of things to do. Going forward, her “circle’ will help out with her car and her house.

• It’s important to have a plan in place in the event your caretaker/significant other leave before you do. Where would you live? Who could take care of what? Plans should involve short and long-term healthcare, short and long-term finances, wills, living wills, medical powers of attorney, memorial desires in writing.

• Do you know where to find important information, or how to do things your significant other does? For example, my husband knows all about the “outside” of the house (e.g. circuit breakers, timers, sprinklers, all of info about our RV…) and I don’t. I know all about the household finances, taxes, investments, insurance, where all the important documents are kept and he doesn’t. We need to find the time to educate each other.

• It is never too early to know how to take care of yourself and depend on yourself financially. When my dad died, there were three of us kids and my mother was a homemaker. I learned early to work, get a college education and into a high-paying career field, save and invest. Good thing. I got MS in my twenties. One never thinks it will happen to him/her.

• Age is wisdom. J and I talked about how well we know what is best for us and how we have the confidence to trust our intuition and judgment in making decisions. We also know when to reach out to a person we can trust to discuss something with. After all, two heads can be better than one.

For instance, J mentioned that her neurologist is pushing her to switch her DMD from Avonex (requiring a weekly injection but working well for her) to a newer oral treatment. Her answer? “NO! I know my body, and I don’t want any new drug with new, unknown side effects and more MRI monitoring.” She asked me what I thought about her decision.

• Finally, WE are in charge of our own bodies. At a recent visit to a new internist, I declined a bone density test, Pap smear, mammogram, colonoscopy, and two vaccinations. After explaining why, she accepted what I had to say, and said she will always work with me.

Getting older is a welcome if you have your health. The truth is, living with MS is very hard. As I get older, it is getting harder and more complicated. I get tears in my eyes when I see commercials of happy senior citizens in active adult communities.

I’m in the so-called Golden Years and retirement. It’s time to let more things go and make the most of it. This doer part of my personality needs to be turned down lower to control my self-induced stress. I just booked a cruise to Hawaii, while I have the opportunity and the time.

Now I am going to fix myself a margarita and watch the hummingbirds on my patio. And not think.

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

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