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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Pharma Companies Invite MS Bloggers: Let’s Talk!

“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

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Unsteady Gait: Time for a Cane?

“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

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How to Handle an ADA Violation if Disabled

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

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Tisch MS Research Center: Stem Cell Trial News

“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

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MS and Your Relationships

“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.” http://debbiepetrina.authorsxpress.com/?p=61

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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Update to Previous Post: The Power of the Brain

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

 

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