An MS Journey

dscn2789

“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

id-100217089

                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

dscn2173-2

MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

MS Bloggers, Old MS Vets, and the MS Community

id-100296982

“Engage and Listen to the Real Experts”

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

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

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

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

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

The ‘Ol MS Vets

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

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

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

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

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

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

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

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

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

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

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

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

* Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Pharma Companies Invite MS Bloggers: Let’s Talk!

Image

dscn2173-2

“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

MS Blogs

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…