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—EMD 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

Unsteady Gait: Time for a Cane?

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“Thoughts and Choices”


April 9, 2014

Many people with MS will begin to experience walking problems due to emerging symptoms like balance, coordination, fatigue and weakness. The typical first type of walking aid is a cane.

The thought of using a cane can be difficult. Some believe they are “giving in” to MS. Others think it makes them feel or look old. Or, that a cane makes one “stick out” and draws attention to them.

People who think this way need a positive perspective, from somebody who has “been in their shoes.” Using a cane:

• Is accepting MS and its gait problems, not giving into it.
• Helps keep you walking, reducing fatigue and improving posture.
• Is a safety net against falls and injuries.
• Draws no more attention to you than a wobbly gait or drunk-like walk.
• Transfers an “invisible” symptom into “visible” one. (A BIG benefit for MSers!)
• Can actually give you a classy, distinguished look!

We use eyeglasses to help us see, so why not use canes to help us walk? When I began using a cane at the age of thirty, I learned all of these things. At that time 28 years ago, I was able to find four different kinds of canes to match my outfits and walk with style.

Now there is a terrific website called Walking Canes http://www.walking-canes.net/multiplesclerosisandgait.html . There are oodles of styles, colors, types and accessories to choose from. This site also has an MS Guide, researched and written by Dr. Elizabeth Lewis, a well-respected and experienced physician.

So check it out, and also check out a previous post I wrote entitled “MS and Walking Problems” http://debbiepetrina.authorsxpress.com/?p=122 .

A final note: If this is your first cane purchase, it is important you talk with a physical therapist or qualified health professional to show you how to properly walk with a cane and how it should be adjusted to fit your physique.

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

How to Handle an ADA Violation if Disabled

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April 1, 2014

When living with a physical disability, “accessibility” is an important word. It is a word that transforms the word inability to ability. For example, making a bathroom accessible for a wheelchair user breaks down the barriers that give the person freedom and dignity.

The American Disability Act was created and passed about twenty-five years ago that opened doors for disabled people in so many areas like public establishments and transportation. Standards were set. I know personally how important things like curb ramps, handicap parking, ADA equipped bathrooms and bus lifts are—I would be confined to my home in my wheelchair if it wasn’t for these accommodations. The Act states:

The ADA prohibits discrimination on the basis of disability in employment, State and local government, public accommodations, commercial facilities, transportation, and telecommunications. It also applies to the United States Congress.

So many places of the U.S. have done a great job in conforming to these standards. But it’s not a perfect world of course, and many old cities or establishments cannot comply completely. I understand this, and don’t make a fuss when something realistically cannot comply. However, there comes a time when there is a clear violation of code that is inexcusable and action needs to be taken.

I called to book a hotel room yesterday, and when I requested a handicap room, I was asked whether I wanted the handicap room with grab bars in the bathroom. Asking to clarify what this meant, it was explained that standard handicap rooms can fit a wheelchair in the bathroom, but there were no grab bars. If I needed grab bars, I would have to reserve a handicap “accessible” suite, which was $10 more. These were the only rooms the facility had for a person needing grab bars in a bathroom!

Time for action. This is so wrong…

I called the ADA and they said that the hotel was in clear violation; if the manager of the hotel had any questions regarding this, they should call the ADA to inquire about their obligation. My choices? I could file a complaint in writing to the ADA for possible action from them toward the hotel, or file a suit against the hotel myself.

The agent informed me that every complaint they receive is evaluated. She assured me that even though the ADA receives so many complaints, I will get a response. She added that it is important to notify them in situations like this; but depending upon if, when and how the ADA will respond to the violator is another matter. If they receive multiple, valid complaints of a clear violation, they will proceed directly to the violator.

There were some large hotel chains that recently received major fines from the government for handicap accessible room violations.
I called the hotel back (The Extended Stay next to Boston Logan Int’l Airport) and told them about their violation of the room and my call to the ADA agency. The manager wasn’t there, and was told by the hotel agent I could just “take it or leave it” in a snippy tone, and to follow up with the manager later. I needed the room and the $10 extra was only a big deal in principle for me.

I plan to write a complaint to the ADA agency. However, I will defer writing to the ADA or calling back this hotel before I stay there. I don’t trust saying anything more to the hotel beforehand, as I may find my room was “given away” when I show up.
In addition, I will speak with the hotel manager at check-in or check-out to discuss this in a civil manner. Maybe I’ll get $10 back, but more importantly future guests should not have to pay $10 more for a handicap bathroom with bars. I’ll show her this blog post.

Here is the link to the American with Disabilities Act (ADA) guidebook http://www.ada.gov/cguide.htm#anchor62335 . The standards were updated in 2010-2012, so make sure that anything you read is the updated standard with that year on it.
The direct number is 1-800-514-0301. The agent I talked to was extremely patient and knowledgeable. This is the same number that could be given to the code violator if they want to inquiry about their ADA obligation(s).

To file a complaint, write up the issue with detail and email it to ada.complaints@usdoj.gov.

While this particular ADA issue with the grab bars was something the ADA said they will follow up with, there are many other situations where they are the “establishers” but not the “enforcers.” For example, while state/city levels have to conform to the number/size/etc. of handicap parking places according to the ADA, it’s up to the local governments to enforce the law.

If you are in question as to what to do and who to follow up with about something, call an ADA agent at the above number. I asked about how photo ID cards could be issued/carried by legitimate handicap placard/plate holders to defray HP abusers, and was told this is something that I would have to pursue with a state’s Department of Motor Vehicles. (Btw, the agent I spoke with indicated many people have called to inquire about this!)

Some things we have to swallow. For example, when I asked about the extremely high beds that are in handicap hotel rooms, the ADA agent explained that unfortunately, there are no codes regarding moveable furniture these hotel rooms. So if I happen to get a handicap room with a high bed, I have to nicely ask the hotel manager if they could remove the base. (This did this for me at several places.)

Personally, if a valid problem is encountered, I think it’s worthy to pursue an action and/or a solution. That’s how things get done. And there is strength in numbers. But I would add that what you say and how you say it is extremely important in achieving that solution. I have stayed in many hotel rooms that needed modification and hotel managers welcomed comments/suggestions and even gave generous rate reductions for any inconvenience I may have encountered. Sadly, hotels will book a handicap room to a “normal” person at the last minute just to fill the room. It has happened to me before, and others that I know in my position. When it happened to me, I nicely asked to not be charged for a room that night, and my request was granted.

www.DebbieMS.com

Tisch MS Research Center: Stem Cell Trial News

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“Read, Support, Spread the Word”

March 17, 2014

The words “Repair—Regenerate—Renew” are music to the ears of us with Multiple Sclerosis. Every day we get a step closer to this goal, and I was asked to pass on the following information about Tisch MS Research Center’s Clinical Stem Cell Trial that is almost ready to launch. They are just shy of $200,000 and are asking for donations. That’s all that is needed to get started. Please read the following, help if you can, and spread the word:

New York, NY- March 17, 2014 – The Tisch MS Research Center of New York (Tisch MSRCNY) today announced that they have launched a dedicated campaign on Indiegogo to raise funds for their FDA-Approved Phase I Clinical Stem Cell Trial.

The non-profit research center aims to raise $300K to be directly applied to the first twenty patients selected to participate in the clinical trial. “We are excited to embrace the online technology that is now available to us to help fund our mission,” stated Dr. Saud A. Sadiq, Chief Research Scientist at Tisch MSRCNY and the study’s principal investigator. He added, “The FDA’s approval in August 2013 of this treatment provides patients and their families with a realistic hope that reversal of the damage this disease has caused is possible.”

The groundbreaking study will investigate a regenerative strategy using stem cells harvested from the patient’s own bone marrow. These stem cells will be injected intrathecally (into the cerebrospinal fluid surrounding the spinal cord). This will be an open label safety and tolerability study. All study activities will be conducted at the Tisch MS Research Center and affiliated International Multiple Sclerosis Management (IMSMP).

“When it comes to a mission of this significance, we will leverage every means possible to secure funding,” said David Greenstein, Chairman of the Board of Directors at Tisch MSRCNY. “It was only natural to turn to the industry-leading capabilities and international reach of Indiegogo to help bootstrap the crowd sourcing needed to enable this important clinical trial.”

MS is a chronic human autoimmune disease of the central nervous system that leads to myelin damage and neurodegeneration. It affects approximately 2.3 million people worldwide.

To view the campaign and make a donation, http://bit.ly/1idZk2L
or visit: http://igg.me/p/696737
For more information on this study visit: www.tischms.org

www.DebbieMS.com

MS and Your Relationships

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“Strategies & Tips”

On February 15th, I facilitated a workshop entitled “MS and Your Relationships” in Phoenix. The workshop was part of Genzyme’s One Day for Every Day Event. This is a summary of that workshop, as I want to share this information with a larger audience.

I began by telling the attendees that a one-hour timeframe was not enough for this big, important subject. It’s bad enough that everything about MS is complex, from the diagnosis to the symptoms; after all, the nervous system is involved. But people are highly complex too because of their thoughts and emotions. So when you put the two subjects together—yikes!!

Just about everyone in the room with MS was there with someone else—either a spouse, sibling or friend. This was good because everyone living with the MSer is also living with MS. And that goes beyond the immediate family.

My presentation was to discuss communication strategies and tips to create a foundation of open and honest communication. I adjusted this goal to first, make the group interactive, and second, address two other critical aspects of relationships: support and knowledge.

• Support and knowledge reduce the fear one has with an MS diagnosis. The more you have of both, the better chance you have to survive this disease. One has to be careful though where one gets the knowledge since because of social media, there is much information available today that can be overwhelming and inaccurate.

• Since MS is still a lifetime illness, knowledge and support will change many times as time marches on due to disease progression and lifetime changes that will occur.

• Everyone in the room needs it; everyone outside the room needs it. What is NOT a strategy? Doing nothing—doing no communicating, obtaining no knowledge, getting no support. Anyone dealing with MS will not survive it if none of these are done.

Who are the relationships the person with MS interacts with? What do we say to whom? Who do need support from?

• Family: partners, children, parents, siblings (Needs communication at appropriate level; “show & tell” is a great game to play to help a non-MSer understand invisible symptoms. For example, have men walk in spike heels to understand balance issues; put 10-lb, weights around ankles to experience walking heaviness and fatigue; put a knit glove on a person and have them find objects in a purse like tissue, quarters, etc.)

• Friends (How much you share depends on depth/closeness of friends.)

• Workplace people: boss, colleagues, human resources (very subjective area—many reasons to disclose or not to disclose)

What groups were missing from the power point slide in the presentation that are just as important?

• Peers (They are a lifeline for both MSers and non-MSers—someone you can easily relate to because they are “in your shoes.”)

• Healthcare team (Make sure all of them understand and have experience with persons with MS!  For example, a physical therapist needs to understand the effects of heat and fatigue of MS. Also, you need to like and trust your neurologist; if you don’t, fire him/her and get another one, as this is a lifetime, crucial relationship.)

• Strangers (I have had to ask strangers for help many times since I had mobility problems since my early years. For example, helping me reach something in a grocery store, or assisting me in a dressing room. People in general–in all of the above groups too–like and want to help. It makes them feel good, and they hate to see someone struggle. Personally, I will let people help even if I don’t necessarily need it!)

• Pets (Wow—they understand/comfort us the most, don’t they?!)

I had all eyes on me from my audience, and many nods or claps. It was interesting to see hands go up when I asked how many felt they needed better support in various groups or who didn’t like their neurologist.

Talk is good, even if it doesn’t solve anything. It feels good to get things off our chest. I have an old MS buddy who called me recently and asked, “Can you talk to me? Is this a good time?” But if there is someone like a stranger or a fellow employee who asks you something that you don’t want to talk about, just simply say: “It’s a long story…”

Venting is also good, as long as it doesn’t hurt anyone. For example, when I get stressed out or frustrated, I cry or call a close friend of mine who is a peer. My husband on the other hand will yell or throw things in an un-harmful way. We go our separate ways to vent because I don’t like his yelling, and he doesn’t like my crying. When the steam is released from the pressure cooker, everything calms down. Holding things inside without a release is dangerously stressful, and we all know how stress negatively affects MS.

What if the people we need to talk with will not communicate or talk? Then it is essential to find someone who will…

In the beginning of my MS, my family was in denial. I went straight to the local chapter of the National MS Society to get literature and meet others who had MS. Later, when both my husband and my mother wouldn’t talk to me about my MS, I went to a therapist who understood MS to help myself deal with these two close people in my life. Years later, I went to a therapist again when deciding whether to give up my career. My MS was aggressive and it was progressing rapidly.

There’s no question that people living with a person with a chronic illness such as MS, is also living with it too. While open communication is essential for all involved, it unfortunately doesn’t always happen effectively without having an “outside” person/s involved. Perceptions are different, emotions are involved, and more often than not, negative consequences result. Ideally, partner/family counseling is essential in most cases.

Realistically, there are obstacles with professional counseling. The first is that many people–whether they have the illness or not–do not want to go to counseling. This was the case in my own personal situation and though I pleaded with my family to go, it didn’t happen. So I went to counseling on my own and fortunately, it helped me tremendously to figure out how to handle my family relationships and how and where I could get support that I needed. Secondly, I believe it is imperative that a good, reputable therapist who UNDERSTANDS MS is found. MS is complicated in many ways, is generally progressive, and currently lasts a lifetime. Finally, many people unfortunately cannot afford therapy; however, many county health departments have resources available for financially strapped people.

So what are strategies to foster healthy communication?

• Should you always be honest about your feelings? When I asked everyone in the room if they were ever dishonest about their feelings, every single hand went up! It obviously is a judgment call, depending upon the people involved, and their personalities. With your healthcare team, you need to be honest. With everyone else, the group agreed that you can’t be a constant complainer or whiner. Be selective with whom you are comfortable with and trust to discuss your concerns, problems, fears, etc.

• Keep a journal about important things that need to be communicated, whether it is info to discuss with your doctor, modifications that need to be made at work, or just notes about what you want to talk about.

• Pick an appropriate time and place for a discussion. Trying to talk when one is tired, hungry, or stressed out will be a disaster. Try to be in a relaxed frame of mind, when interruptions will not occur.

• Be respectful of what the other person is saying—this is a two-way conversation. Actively listen to each other, and avoid accusations, finger pointing, name calling, yelling, etc. How and what we say matters, as well as the tone that we use. Avoid negativity.

• Two-thirds of communication occurs through body language. Your posture, facial expressions, eye contact, etc. speaks volumes. When someone rolls their eyes or points a finger at you, what does that indicate?

• Ask for help and ask to help. People want to help, and people need help. Be explicit or give examples when talking about this to help clarify your statements. Ask questions and share perspectives. Try to put yourself in the other person’s shoes. And remember—none of us are mind readers. Not only are you communicating here, you are educating.

• Everyone should show and express their gratitude often. Give complements.

• A hug, kiss or smile goes a long way.

• From experience, I believe that we MSers set the tone and comfort level. If we are relaxed and open, the other person will be too.

• My personal advice to all: show and give empathy, not sympathy.

• Use humor when appropriate. Many times, the subject being discussed can be very sensitive and not funny at all. Or, it is hard to be humorous when you are not feeling well.

• Avoid arguing and be patient. If an argument develops or patience is lost, quit the discussion and regroup later.

• Always try. If it doesn’t work, try something else.

Well we ran over our one-hour timeframe, which was no surprise. But it was a start, and I always say that “Getting started with anything is the hard part.” Now everyone has a framework or some ground rules they can try to use to enhance their communication, support and knowledge.

At the conclusion, I gave everyone a copy of a previous blog that I had written entitled “MSers and Their Loved Ones.”

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

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

 

 

Update to Previous Post: The Power of the Brain

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January 29, 2014

As I was perusing the internet about the brain, I came across this news today:

The NIH BRAIN Initiative – is part of a new Presidential bill/focus aimed at “revolutionizing our understanding of the human brain.”

Check it out, as MS could benefit from research done! http://www.nih.gov/science/brain/ $40M is allocated in 2014 for this.

www.DebbieMS.com

 

The Power of the Brain

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“Mind over Matter”

During a recent January rut, I decided to escape into movie-land to occupy my mind with something other than my personal woes. I love movies and I have seen five of them that are recent releases. Four of them are based on true stories; one is not, but I like to imagine that it could have been.

As I watched these movies, it reminded me how powerful the brain is in our ability to survive. There is a common thread in all of them: Mind over matter. It is possible and it does work. Since I live with MS, I think about the brain a lot because it is a disease that involves the brain.

The movie Lone Survivor shows the unbelievable strength and endurance of Navy Seals, as does the lead character in Twelve Years a Slave. How can a person’s psyche be maintained while experiencing such immense physical and emotional pain? Matthew McConaughey’s character was given one month to live in Dallas Buyers Club, yet he finds ways to live another seven years because he’s not ready to die. All is Lost and Gravity are two movies that have characters with incredible intelligence in their fields—sea and space–who find themselves all alone in disastrous situations. Their ability to focus on using their skills and ingenuity, despite their obstacles, keeps their fears at bay.

The will to live, to survive, to endure, to think, to focus, to achieve… Sometimes these can be acquired through training; sometimes it just happens because of the human spirit, hope and faith.

We have all heard stories about people who obtain super-human strength and endurance. The guy stuck in a crevice who cuts his arm off to get free, or the woman who lifts a heavy car off of her child after a crash. POW’s who survive torture. Holocaust survivors.

There are people who beat the odds when given a bad prognosis for something like cancer. Or other chronically ill persons who get better receiving what they thought was a new drug, when unknown to them they had really received a placebo (i.e. a “sugar pill”)!

The possible, the positive. Positive thinking is like an ol’ shot in the arm for me. It gives hope and energy. The confidence to move forward.

I remember using Lamaze when I delivered my son, and had a relatively quick and natural childbirth. Yoga and deep breathing techniques are effective in helping my neuropathic pain and muscle spasms.

I read about the brain often to learn about new research taking place for MS. I’ll start Googling a particular subject like myelin repair, and an hour later I am immersed in reading about rehabilitating a stroke victim. Fascinating stuff going on with the brain.

Yes!–there are other ways to “train” or “re-train” the brain. I have had partial success in past years improving problems that MS has caused me, such as balance and coordination. My will to do aquatics therapy regularly has helped maintain function. Yes!—there has been great advancement in research for restorative function such as stem cells. Clinical trials have started. Yes!—the brain has the ability to repair some damaged myelin in the early years of MS. Yes!—exercising and resting the brain keeps cognition healthy and functioning well.

And then there are powerful things the brain responds to: brainwashing, hypnosis, and drugs. Both positive and negative.

It is a powerful organ, but a delicate one as well. For the life of me, I can’t understand why someone would do boxing or head-contact sports. While they are working on battering their brains, I’m working on protecting mine. And while some people will take any drug a doctor will prescribe (or not prescribe!), I diligently do thorough research before taking any new pill or shot. That is what my great-aunt used to refer to as “use your intelligence.”

Mind over matter. Realistically, it doesn’t always work. But I like to believe that a person can do just about anything if he/she puts their mind to it.

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

 

 

 

MS Blogs

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January 12, 2014

I am proud to announce that my MS Blog was selected for Neurology Now Magazine’s list of Patient Bloggers! http://journals.lww.com/neurologynow/Fulltext/2013/09060/Neurology_News__Having_Their_Say___Patient.16.aspx

Neurology Now Magazine:
December/January 2013 – Volume 9 – Issue 6 – p 14

Neurology News: Having Their Say: Patient Bloggers

“While your doctors can give you information and guidance about your condition, they’re not always the best source for practical advice. Patient bloggers offer that in spades as they chronicle their own journey with neurologic disease—sometimes funny, sometimes painful, but above all else, familiar. We tried to find blogs that are well-written, honest, and responsible in the way they handle medical information.”

Neurology Now is sponsored by the American Academy of Neurology and the American Brain Foundation. Free for subscribers, information is provided about various neurological problems in their publications. Included in each of their issues are also stories written about individuals—both well-known and unknown—who are dealing with a disorder/disease successfully. Here is a link to check it out http://patients.aan.com/index.cfm?axon=redirect&&path=/go/neurologynow  .

Also check out my 57 articles within this blog at the bottom of this blog page, as well as my website that contains much info about multiple sclerosis www.DebbieMS.com .

Best-

Debbie
Managing MS, Straight Talk…

Prednisone & Corticosteroids: Helpful Tips

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“What doctors/pharmacists don’t tell you.”

January 3, 2014

It is amazing how frequently the subject of steroids comes up. Just in the last two weeks, three people told me they were on prednisone and they were all irritable about the side effects. One was taking them for sinus problems; another was taking prednisone for arthritis. The third was taking them for an MS flare-up.

They are powerful drugs and are prescribed often for people with and without MS. Why? Because their primary purpose is to reduce inflammation. And inflammation occurs in all parts of the body, and these drugs do help.

But there is much to know about steroids, and unfortunately, the doctor and the pharmacist never tells it all. The first experience with steroids is horrifying to say the least, and creates tremendous confusion and stress. I personally hated them in the beginning, but after I understood my own body’s reactions and the fact that they did work for me, steroids became my friend.

For folks with MS, corticosteroids (“steroids”)—usually Solu-Medrol and prednisone– are used to reduce the duration and severity of a flare-up (or exacerbation, or attack). Solu-Medrol is given intravenously for 3-5 days usually at home (about 1-2 hours per day). Prednisone is given orally usually over a 10-14 day period, beginning with a very high dosage (e.g. 80mg/day works for me) and tapering down the last week to 10 mg. by the last day.

What to know about steroids:

• Again, the purpose of steroids is to reduce inflammation. When the dosage is high, the immune system will become suppressed. Therefore, you want to take all measures to keep your resistance up and your exposure to infections, colds and viruses low. If you currently have an infection or virus causing the flare-up, try to get rid of the infection/sickness before getting on the steroids if possible.

• A very common side effect of steroids is water retention. Eliminate as much salt as you can from your diet while taking them. This goes beyond table salt. Canned, frozen and packaged foods, pickles, condiments, luncheon meats, etc. are loaded with sodium; so avoid these and eat bland and fresh foods. Often, people will get what they call a “moon face”; the face can become full and rounded.

• Appetite usually increases when taking steroids, so stick to snacks like carrot sticks, celery, apples, or unsalted popcorn. The sacrifice of a strict food regime for a maximum of two weeks is well worth the extra pounds you won’t gain and have to worry about later.

• Once you start steroids, follow the complete program and do not just quit taking them. If you do, it can inhibit your adrenal glands from producing the natural amount of cortisol later.

• A universal complaint is insomnia. Speak with your doctor about sleeping pills. Even with a sleeping pill, you may only get four to six hours of sleep. Try to read, do paperwork, or anything that will keep you from dwelling on not sleeping.

• There are many other side effects when taking steroids; the amount, type, duration will be different for everyone. For example, I get supercharged and euphoric when I’m on steroids, especially when they kick in and my symptoms are improving. I also get very constipated. Other frequent complaints include irritability and mood swings. If you are anxious, consider asking your doctor about an anxiety pill to minimize stress.

• For women, it is not proven yet whether steroids affect birth control pills. It is always a good idea to use additional protection while on steroids.

• Try to temper your expectations and not compare yourself to anyone else. Some people respond faster and better than others. Take notes everyday about what is improving, what isn’t, how much… It will help with your next episode. You will learn your own body reactions and patterns as time goes on.

• When a steroid program is finished, a person will often go into drug withdrawal. Symptoms may worsen again, and different side effects can pop up. For me, I get the shakes, anxiety, weepy, acne, some hair loss, sleepy; and my symptoms will be worse than before I even got on the steroids. After my “withdrawal” period, my symptoms will adjust to what will be normal for me; and all of the other side effects from steroids will go away. After having been on steroids on average of twice a year over the course of my MS, I’ve learned what to expect and how to ride it out.

• There are serious side effects to using steroids over a long length of time—like months or even years. These include things such as bone density loss. As always, one needs to weigh the benefits against the positives when taking any drug.

Sometimes, steroids work for a person, and sometimes they don’t. And of course, all people react to a drug differently—both in response to the effectiveness and to the side effects.

All you can do is try. If it works, great; if it doesn’t, well something else will have to be tried to alleviate the problem.

www.DebbieMS.com

Holidays Got you Stressed?

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“Letting Go”

December 20, 2013

After all these years, I still get to the point of total meltdown when in the midst of the holiday season. I know I’m older, I know I have MS, I know people don’t expect me to wait on them or see a perfect house… Yet I still occasionally get that desire way to do things myself–perfectly with ease and energy. It used to be my personality.

Even though I also know those days are long gone, the old personality resurfaces. I still freak out every December as I tearfully stumble through trying to decorate and send cards. When it gets to the point like a balloon getting ready to burst, I have learned what to do for myself.

I had heart-to-heart talks with two friends on Monday, who are sixty-ish and feel like their to-do lists are never completed because of their lack of energy. I talked with my good-humored neighbor, who is legally blind and “gets” what it is like to constantly have to rely on others for help. And then I cried and cried. It all made me feel better. I had to let go and move on.

Between Christmas and over New Years, I will have relatives coming to stay with us for a week. I remembered this article I wrote last summer and re-read it. Good advice; I’m back in the swing of things.

I am re-posting it because I think anyone with MS or a chronic illness would benefit from reading it whether it is for the first time or not. It doesn’t matter what time of the year it is either, though right now is a perfect time to put these things into action.

Managing Overwhelming Circumstances
“Speak Up, Nicely.”
August 13, 2012

It was 117 degrees yesterday, and the weather prediction doesn’t expect the temperature to go down much over the next week. My family from out-of-state is staying with us for the next ten days. Between the heat, fatigue and overwhelming activities under my roof, will I manage? Yes.

How? I learned when to say “yes”, “no”, and “would you please…”

This wasn’t something that came easy to me when I was diagnosed with MS. I was always a very independent person, offering my help to others. It took a long time to use these words in the right manner and circumstance. After all, we are talking about a change in behavior. Changes in behavior do not happen overnight, but it can happen if you want them to.

For me, it wasn’t a conscientious decision on my part to ask for help, accept help, or set limitations. The mounting of excessive fatigue and other interfering symptoms forced me. If I didn’t succumb to changing my behavior in this way, I would not have survived my MS.

Not only is it essential to me, it’s essential for my friends and family, too. In the beginning, they wanted to help, but were cautious about what to do. So I learned to open my mouth in the correct way. I set the tone: if I am comfortable, they are comfortable. If I tell them what I need (or don’t need), or what to do (or not do), they are glad for it. Everyone benefits.

It was difficult in the beginning for me to say “yes”, “no”, or “would you please…” But once I got started, it got easier.

Here are examples of this week so far:

“OK. You know the rules. Mi casa es su casa. Help yourself to anything you want and clean up after yourself.”

“Would you excuse me, please? I am so tired and need to lie down for awhile.”

“Yes, you can help—could you finish cutting up these veggies? And can someone else take out the garbage?”

“It is SO hot. Would you please get me an ice pack from the freezer—there’s a crowd in the kitchen!”

“Would anyone mind going to the store? We need to get…”

“No. As much as I would like to go, I better not. It’s too hot and I’m too tired. When you are gone, it will give me a great opportunity to sneak into bed and take a nap.”

“Yes, you can run the vacuum for me!”

“No, you guys go ahead and watch the movie—I’ll watch it another time. I’m going to hit the sack early.”

It works beautifully. My family is great–willing to pitch in, and understanding my need to take care of myself. They love to help me, and I love their help and appreciate their understanding.

Gone are the days when I felt that I needed to get up first in the morning to make coffee. Gone are the days when they felt uncomfortable as they watched me struggle trying to fix a meal for them. Gone are they days I felt too proud to ask for help. Gone are the days when they felt intimidated to offer help.

So, do yourself and everyone else a favor: Speak up, nicely. It is a win-win situation.

www.DebbieMS.com