Learn Quickly about Multiple Sclerosis–All in One Place

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                                        Need Easy and Accurate Direction?

Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? You are lost in cyberspace trying to get info?

Since I have lived with MS since 1980 and have been involved with the MS Community for almost thirty years, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and got to work. It now exists, and the positive feedback I have received from people has been equally overwhelming and gratifying.

I can help in two ways:

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

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

Recently I received this email, one of many:

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

Why should someone read THIS book? (Click here)

There are many books about multiple sclerosis; but I like to point out these things about mine:

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

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

• This guidebook is a collaboration of both my experiences and those with peers, professionals, and others that I interacted with about MS in for decades.

• My manuscript had been read and endorsed by health care professionals in different fields that I believe lends credibility: An MS specialist neurologist, an internist, a MS physical therapist, and nurses.

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

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

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

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

I encourage you to check out reviews on Amazon.

My Website DebbieMS: A Wealth of Info in One Place

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

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

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

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

 

**Image courtesy of Stuart Miles at FreeDigitalPhotos.net

MS Bloggers, Old MS Vets, and the MS Community

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“Engage and Listen to the Real Experts”

The MS Community is unique. There is an immense connection between MSers to share, ask and learn information about living with multiple sclerosis. A comradery of support to each other to continue moving forward through good and bad times as they are saddled with a “progressive”, lifetime disease with no cure. Friendship and gratitude are beyond words to describe them.

The MSers in the MS Community work their butts off trying to create awareness, education, advocacy, and fundraise. They initiated and are now collecting patient information through iConquerMS to enhance MS research for patient treatments.

Within this community of MSers that I have been a part of for three decades, I distinguish two groups of who are the real MS experts, who can be relied upon and trusted for credible knowledge and guidance:

The “Elite” MS Bloggers
These are MSers who have lived with MS for years, and dedicate their lives every day writing to help MS patients survive. I call them “Elite”, because these bloggers aren’t just writing stories; they immerse themselves in a variety of activities and social/media platforms related to MS for a dedicated purpose. Each one has their special purpose in the MS arena—to educate, advocate, inspire, provide humor, research, or focus on wellness such as fitness, being active, etc.

As a group, they work and share with each other and more recently, some of the best MS bloggers had the opportunity due to several Pharma summits to meet each other. Both individually and as a group, they are a powerhouse of experience and ingenuity. Prior to their roles in and for the MS community, their professional backgrounds would knock your socks off.
I know, because I have met, shared, and worked with them.

The ‘Ol MS Vets

“The ‘Ol MS Vets” are the MSers that have lived with MS for more than thirty years. They are the ones whose life started in the Dark Ages—no MRI’s or sophisticated diagnostic tests, no Disease Modifying Treatments, limited research, scant MS awareness or literature, no social media…

‘Ol MS vets know MS well, and are full of wisdom. So many learned to manage their MS well and led full, quality lives. Yet, they are sadly passed over as a source of realistic and honest knowledge and support by non-MS patients.

It is amazing why these folks are not included in discussion panels at events. Pharma companies just within the past year or two recognized what MS bloggers could offer them. They reached out and hosted MS blogger summits to get their expertise, information and ideas to help them create their own MS support services. Then they took a step further and invited these MS experts to lead workshops around the country on specific MS-related topics and symptoms.

Why aren’t other large MS or neurological events and conventions including these MS experts for their input, participation, and guidance? Neurologists are in the forefront as the primary presenters and Q/A panels. Sure, all these events will have a person with MS tell a personal, general story about their MS experience, but that is about as far as it goes. Why isn’t there a group of MS experts on a Q/A panel for the audience? Or a table set up with actual MS peer counselors in an area where MS patients can speak face-to-face with someone for guidance? Why aren’t they used as credible spokespersons?

Neurologists may be pros on MS methodology and gathering research, and but WE are the pros on actual MS experience. I bet each of us bloggers have spoken to thousands of people that would supersede the number of patients a neurologist would have as MS patients.

Personally, I would go toe-to-toe with ANY neurologist on ANY MS-related subject or issue. I cringe when I see or hear “consult with your doctor about…” So many MS patients have a poor relationship with their neurologists. Patients don’t know everything, but neither do the neurologists, or researchers. Why isn’t there collaboration?

Last month, there was an event in Rome called the International Multiple Sclerosis Conference. They stated:

“Unlike many other events focused on novel MS treatments, the conference in Rome, entitled “Raising standards: The voice of people with MS,” will be focused on MS patients and how their expertise can help treat the disease. “This event is different,” explained Kaz Aston in a press release. “Because it’s all about the patient, and about the ‘expert patient” as a concept — recognizing that MS patients have a lot to bring to the table.”

Sure, the MS community is interested in learning about the latest research to stop, prevent, rehabilitate, and cure MS. But there is a whole lot more than research and drugs that the MS patient needs in order to manage their MS–which includes a broad spectrum of things both inside and outside the MS community.

Truthfully, I have to crack up when we are told research studies are needed and are now going on for the impact of things like stress, fitness, and massage on MS. Are you kidding me?

When will we MSers be included, listened to, and taken seriously?

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

* Image courtesy of Stuart Miles at FreeDigitalPhotos.net

MS: Health and Wellness

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“Critical for MS Management and Control”

It’s the new buzz phrase for multiple sclerosis. And it’s about time it’s getting attention.

But will it get the proper messages and info out about what MS “Health and Wellness” actually is? I’ve seen the words “Diet” “Exercise” and “Emotions” as the main categories for the new Health and Wellness strategy for helping to manage MS. But there are a lot of sub-categories under each of these groups, and there is much more to Health and Wellness than just these groups.

I wrote my book three years ago (Managing MS: Straight Talk…) and listed “My Ten Commandments” as my primary way of handling my MS. Guess what? It’s about the health and wellness ways I follow to not only manage my MS, but also to control the progression of it.

t’s the other side of that coin for MS management strategies—non-medicinal vs. medicinal. A side that has been neglected or not addressed for years.

Here’s the goal for MSers: Until a cure is discovered, or restorative abilities to damaged areas are found, it is paramount that a person with MS lives with their primary goal to prevent as much damage to the nervous system as possible.

HOW DO WE DO THAT?

We know that MS is an autoimmune disease, and when our body is under attack by something like sickness, infection, physical or emotional injury, etc., our immune system’s army of fighter cells screw up on their job and attack our brain, spinal cord, and optic nerves instead of the foreign invaders. Attacks lead to inflammation, relapses, lesions, damage and so on.

• Major attention has to focus on keeping our immune system CALM. Good, conscientious health and wellness will keep the body’s resistance strong against those culprits that trigger activation of the immune system. Develop habits to prevent sickness, infection, injury and chronic stress. For circumstances beyond our control (e.g. a death, a catastrophe…) reach out to get as much help and support as possible.

There are many dimensions of health/wellness that include but are not limited to:

**Physical Wellness: such as sleeping, eating, and exercising properly; watching your   weight; avoiding the use of tobacco, drugs, and excessive alcohol consumption.

**Social Wellness: having healthy, positive interpersonal relationships with family, friends, pets and others.

**Spiritual Wellness: finding meaning and purpose in life. This may or may not include religion.

**Emotional Wellness: understanding our feelings and emotions and knowing action plans to follow when needed

**Intellectual Wellness: maintaining cognitive stimulation to prevent mental stagnation. It is a lifelong process of mental challenges and creativity.

All DMTs (Disease Modifying Treatments) work by suppressing, or altering, the activity of the immune system. These therapies are based on the theory that MS is, at least in part, a result of an abnormal response of the body’s immune system that causes it to attack the myelin surrounding nerves. Corticosteroids used to treat relapses also suppress the immune system.

What does this mean? When the immune system is suppressed, the body is more susceptible to infections and illness, and thus relapses. Therefore, it is imperative that all good health and wellness habits be followed. For example, if you take Solumedrol, avoid people with colds and viruses. At the first sign of a UTI infection, get on an antibiotic. You can take care of your health so that your immune system isn’t ‘triggered’ to act due to illness, etc.

• One must think of health and wellness both in the short and long term. After all, there is no cure yet and nobody knows if/when that will happen. We have one body, and we need to protect it, be proactive, and make prudent choices. For example, every drug that is taken has to be processed through the liver; what are the risks vs. benefits of any drug we take regularly after 10, 20, 30 or 40 years?

Everyone has their own stories and experiences with MS. Here’s mine:

In 1980 when my first major attack happened, I was only 25. Since there was scant literature about MS, it took a awhile to understand the disease and figure out what to do. I finally learned proper health and wellness for MS that I followed for decades and am still learning as new things emerge.

Flash forward 34 years. I just turned sixty. I never took a DMT, had only two MRI’s, quit smoking in 1987 and having been swimming 3x/week for thirty years. I weigh 115 lbs., and have perfect scores on all my tests: blood pressure, cholesterol, pulse, circulation, Vitamin D and all the other things that are measured when blood is checked. Although I have been self-cathing for 28 years, both my bladder and kidneys are as good as a “normal” person’s due to good neurogenic bladder management. Meds are taken for spasticity, depression, and bladder regularly, and for sleeping/anxiety as needed. I practice yoga, deep breathing and stretching for pain and stress. Tutoring Spanish for years and reading/researching technical data surely help my cognitive function.

Yes, I am the one in four who ended up in a wheelchair, but the strength and agility in my upper body and trunk enable me to do many things independently, including driving.

Is it easy? Quite frankly, no. It takes a tremendous amount of discipline, determination, and control. And now that I am starting my seventh decade of life, I am slowing down.

But I know two things. First, if I didn’t practice good health and wellness, my MS would be so much worse. Second, if/when that breakthrough for remyelination or a cure arrives, I’m in great shape for it.

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

 

*Image courtesy of David Castillo Dominici at FreeDigitalPhotos.net

 

 

 

How do you Manage MS?

“Want some help?”

Everybody wants a cure for MS, to halt the progression of it, and restore the damage it causes to us. But what do you do in the meantime until those things happen?

You manage your MS effectively.

If you ask people with MS how they manage it, most would respond by saying what treatments/meds they are taking and then add that they may exercise, do yoga, etc.

While this is true, it’s only a small part of a big answer. Everything about MS is complicated: the diagnosis, the symptoms and relapses, treatments, health team support, relationships, the explanation…  ALL of these things have to be managed effectively in order to survive MS.

One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case. Yes, let me repeat that– One who manages their MS effectively is also helping to control their symptoms, relapses and the course and thus progression of their case.

I know, and I know countless others who know. Beginning in 1980, I’ve lived with it for 34 years, and have been actively involved in the MS community for nearly thirty years. An ordinary person of moderate means, I went through motherhood, had a career I had to eventually give up, managed a household, and enjoyed life.

In a nutshell, these are the main objectives in managing MS:

1. Prevent sickness/infections, physical problems, and long-term chronic stress.
Why?  Because any of these will trigger a relapse. And relapses usually result in progression and nervous system damage.

2. Take care of  your body in all ways to be healthy.
This includes getting enough sleep, exercise, eating sensibly, managing stress, being mentally and emotionally happy, etc. This also includes things like weight watching, no smoking, etc.

Why?  Staying healthy keeps one’s resistance up to prevent getting sick (thus preventing relapses) as well as keeping symptoms from intensifying. In addition, maintaining wellness helps prevent your body from getting other serious problems like high blood pressure, diabetes, poor circulation…

3. Carefully choose and monitor your treatments.
While drugs are often helpful for treating symptoms, relapses and slowing progression of MS, there are downsides.  First, one must remember that all drugs have side effects that add stress and other impairments to the body. Second, MS is a life sentence; one may live decades until a cure is discovered to halt progression or restore damage. Every drug taken is passed though the liver and has other risks. There is not a treatment that exists today that totally halts progression, relapses, or improves symptoms.

4. Use a 2-prong approach when managing symptoms.
In addition to using medications, there are SO many ways that MS symptoms can be managed non-medicinally—pain, spasticity, bladder issues…  Often, using a combination of using medicinal and non-medicinal means together can be helpful as well. For example, I take baclofen and do stretching exercises daily to reduce my spasticity.

In addition, alternative non-medicinal therapies  have been successful like yoga, acupuncture, massage, pilates, etc. to help with symptoms.

Managing MS effectively requires a tremendous amount of knowledge and support. It’s hard, it takes time, requires change, but it works.  However, learning to managing MS is a daunting task because we know that no two MS cases are alike and the disease is so unpredictable. Furthermore, because there is so much information available from so many sources, one can become overwhelmed and confused.

Want some help?

My book “Managing MS: Straight Talk…” is now available on eBooks for only $2.99 . You can also check out my website below for oodles of info—articles/resources with links, videos, my MS blog of nearly seventy articles, my credentials… The information is accurate, easy to understand, and concise.

My personal mission is to help others dealing with MS, and these two tools—my book and my website—will definitely help you with something. There is nothing to lose, and I guarantee something to gain!

 

**Video:  “How to Manage MS: Two Tools”
https://www.youtube.com/watch?v=iliPH66JCaw

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

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

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

Pharma Companies Invite MS Bloggers: Let’s Talk!

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“What Makes Us Tick?”

April 29, 2014

Talk is good. Attentive listening enables trust and knowledge. Interactive discussions generate ideas and resolves problems. All of these can be a catalyst for action.

On April 14, I was invited to attend a MS Blogger Summit, sponsored by two pharma companies—END Serono and Pfizer. Their objective? They wanted to reach out to us about our lives with MS and our blogging, and how they could continue to support the MS community. The summit was professionally arranged and conducted–from the accommodations, to the moderators/speakers, to the agenda. Interaction and information exchange among all participants was sought; it was achieved.

The companies wanted to listen and learn from the ten of us MS blogger attendees. They also included the caregivers that attended with some us of bloggers because after all, they are living with MS, too. The MSers were a diverse group. We came from nine different states, had varying degrees of disability and how long we lived with MS. The sponsors were just as diverse. They represented a variety of positions from communications, MS Support, and social media personnel to the top CEOs from both pharma companies.

Were they sincere? I believe so. They listened intently and questioned us a lot about what personally makes us strong in managing our MS, what inspires us to blog/advocate, what motivates us… They gave us a tour of their MS call support center with a follow-up Q & A session with the staff. The use of social media was discussed much—the types, role and content of the numerous platforms that are currently available.

I was honored to be invited and was gratified that finally MS patients were called upon (for a change) for OUR input. We are not celebrities, doctors, or non-profit MS associations. We are ordinary people living with MS. And we MS bloggers have been out there seriously interacting with others in the MS community.

The MS bloggers established an instant camaraderie; we are peers. Many of us have crossed paths in the social media world, but it was beyond words to describe what it felt like to meet in person. To touch, to hug, to look each other in the eye and read each other’s body language.

When the questions were asked about what makes us strong, inspired, and motivated to reach out to others while managing our own MS, the included: life, family, faith, hope, helping others, laughter… Each of us bloggers shared our personal stories.

But I have a theory and believe there is another major thing that we didn’t really touch upon. Most of the thousands of MSers I have interacted with over the past 34 years I’ve lived with MS have a unique thread about their personalities. I find that MSers are achievers, go-getters, ambitious, and doers. We have in inner desire to push ourselves, to be ambitious, to strive for perfection. These traits impose incredible stress on us; and anyone with MS will tell you about the negative impact stress has on our physical, mental and emotional states. Any type of stress causes MS symptoms to react; chronic stress can leave one incapacitated.

Could this type of chronic stress inherent to our personalities be a trigger to “bring out” our MS? At the same time, could this stress created by our personality traits produce the adrenaline that enables us to go on and move forward, in addition to the other things mentioned like life, family and faith?

The one evening/one day summit flew by and an additional day would have been better. It was important and great fun, but the intensity of the agenda and travel for most of us left us quite fatigued and overwhelmed. Nevertheless, we would all do it over again, and left well-connected and grateful when the summit concluded.

The following are some of my personal thoughts/concerns that I contributed to the event that led to some discussions and sometimes agreement. We bloggers were asked not to share the pharma companies’ propriety information, but were invited to share our insights publicly.

• The subject matter was based primarily for social media platforms. Why not step outside that platform and do more networking with other forms of media, such as TV or magazine that would include quality info? I’m not talking about a personal interview with a newly-diagnosed famous person “battling” MS, nor a 5-minute interchange between say, a neurologist and a journalist announcing a new treatment.

Genzyme, for instance, is currently doing a 24-city national one-half day MS event that includes a variety of information for the MS community in each area. Local professionals, speakers and support associations were involved to participate. The main focus was to provide information to those dealing with MS, not just their particular MS treatment. I was involved with the one in Phoenix in February, as a speaker/facilitator for a workshop entitled “MS and Your Relationships.”

• Much more work needs to be done in educating people about MS, not just making them aware of it. There are too many misconceptions about MS and it is too often forgotten because so many symptoms are invisible.

Sadly, the MS events (e.g. MS Walks) rely on friends/family and reach no further than that. Most bloggers agreed that both awareness and education is sorely lacking outside of the MS community. I shared a story about a hospital stay I had last year because of some serious MS complications. Most of the staff did not really understand MS nor its medical implications. This is a tragedy; it is a highly-rated hospital in Phoenix. I later invited myself to do a one-hour education program about MS to that hospital staff and they loved it.

• The numbers of persons with MS need updated. The same number of persons with MS has been used for at least the last eight years by everyone—MS Associations, pharma companies, doctors, etc. This is ridiculous. In addition, the number of people dealing with MS is staggering when you take into account family, friends, health professionals, etc. over a lifetime!! The financial impact of supporting MSers’ drugs, equipment, and health care is also staggering and affects most of our population. Saying MS affects 400,000 in the US gets us nowhere. Larger numbers speak volumes. There is strength in numbers—especially accurate ones.

• There needs to be more collaboration with all the players in the MS Community—the MS Associations, the pharma companies, the social media platforms, the medical field, etc. Everything seems disjointed. There is so much stuff out there and often information is inconsistent or incorrect. The disease itself is complicated and creates so much fear; this fragmentation or lack of unity adds to the complexity and fear. Where should a MSer start or go for the best help/info? Who/what should he/she trust?

Somehow, someway, these players need to come together. Maybe once a year—during March, the MS Month—on a main stage on a national level? An MS 2-hour TV education special? Again, there is strength in numbers, and education. But the point was raised, how do we do this? A main coordinator or a committee would need to be established.

• I look at social media as either being a best friend or worst enemy. There is a time and a place for it, and selection is critical. Part of my feelings is due to my age, part is due to the fact that I have only been involved with social media for a little over two years, and part of it is that I have had years of experience speaking with people about MS as a trained MS Peer Counselor in countless situations and circumstances. I have dedicated three decades of my life helping people dealing with MS as I myself lived with it. My personal motto is: knowledge and support = less fear. Sometimes social media platforms are biased, overwhelming in content and downright incorrect that causes more fear and stress.

An upside to it? Information is at your fingertips; it is an alternative to the frustrations of the phone world, where people/offices don’t answer, re-route you, don’t return calls, drop your calls, or answer your questions by reading from a manual/script.

• The CEOs of both pharma companies gave an overview of other MS treatments they were working on and opened the floor to Q & A. Nothing is planned that includes restoration of lost function or damage. For me, I say–hmm?! In a later interactive session, there was interesting conversation regarding the huge profits pharma companies earn from the drugs, where it goes or could go, and other personal financial dilemmas for MSers…

• Much emphasis by most in the room is that we should use social media to inspire others and offer humor, as positivity is essential for a person dealing with a chronic condition. I am certainly a proponent of this and do it myself in the MS community.

However, I suggested there needs to be some different support available besides inspiration and humor. I’m talking about the times when a person just needs to vent, be listened to, receive empathy (not sympathy). Let’s face it, sometimes things just aren’t funny or it isn’t the right time for inspiration. And info should be realistic as much as possible.

Maybe I feel this way because I was probably the MS Blogger in the room that lived with MS the longest. I have a club of “Old MS Vets” who have lived with MS for over thirty years. There is a difference in perspectives and extent/types of knowledge between those who have lived with it over longer spans of time, as well as those who have different levels of disability.

I must emphasize that the MS Bloggers at this event are valuable resources that offer a wide spectrum of support and things to offer through: inspiration, humor, research updates, event info, MS news, tips to help manage MS, etc. etc. etc. through many reliable sources. Four of us have written books, and all of us write, share and care. I find them trustworthy after meeting with them. Names and websites are below. A recent Facebook site, Multiple Sclerosis Bloggers and Writers was set- up, and is open to any one to check out and be included https://www.facebook.com/groups/1426077517643614/.

Thank you EMD Serono and Pfizer for the opportunity to participate in the MS Summit. The interaction/information exchange was extremely useful and interesting to everyone present. Hats off to these companies for taking the initiative to collaborate with us living with this lifetime disease and treating us so well and with respect. We MS bloggers are happy that these companies reached out to us in the MS community, the actual end-users. (Note: We MS bloggers use various meds/DMDs/treatments, and have different viewpoints about our treatments; most of us are not Rebif users. Treatments were not specifically discussed during the summit.)

Overall it was a win-win situation and I hope other companies and organizations helping the MS community will follow their lead. There is so much more that could be done.

MS Blogger Summit Participants

Dave Bexfield, http://activemsers.blogspot.com/
Jon Chandonnet, http://www.jonchandonnet.com/
Lisa Dasis, http://www.mslisasays.com/
Yvonne Desousa, http://yvonnedesousa.com/blog/
Lisa Emrich, http://www.brassandivory.org/
Laura Kolaczkowski, http://insidemystory.com/
Nicole Lemelle, http://www.mynewnormals.com/
David Lyons, http://www.everydayhealth.com/columns/ms-fitness-challenge/?dlpcode=sa
Debbie Petrina, http://debbiepetrina.authorsxpress.com/
Stuart Schlossman, http://www.wwwmsviewsandrelatednews.blogspot.com/

www.DebbieMS.com

March is MS Awareness/Education Month

“Get Involved”

March 4, 2013

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

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

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

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

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

Please start today!

www.DebbieMS.com