Justin Wilbert was diagnosed with Multiple Sclerosis (MS) in October 2005. Like thousands of others with this disease, his body began to fail him.  The severity and speed with which his symptoms progressed quickly left him two options–fight or die.  Left intermittently blind and bed-ridden by the disease, Justin refused to be beaten and spent what energy he possessed aggressively researching treatment options.  During this time he endured every prescription drug and alternative treatment currently used for MS patients.  The only relief he found was in Tysabri, a drug with a risk of a brain disease.

In November 2009, Justin’s perseverance paid off.  Through extensive research, he discovered the liberation procedure.  He has since traveled to India to undergo the simple procedure.  The experimental procedure, only recently available in the United States, and not supported by most insurance plans, has  led to dramatic improvement in his condition.  Though he has not made a full recovery, Justin has regained his vision, a dramatic reduction in pain, and the ability to enjoy regular daily activities.  Essentially, he got his life back.

Now, Justin has one objective–provide the hope of recovery to others faced with this debilitating disease.  Currently, the liberation procedure is gaining momentum in the United States but awareness of this treatment is low.  Few have the opportunity to share the news of a life-saving treatment.  I hope you will join me in telling Justin’s story and changing the lives of thousands.

Below is an article from the newspaper in Justin’s hometown as well as the link for re-posting purposes.

http://dailyinterlake.com/news/local_montana/article_7a773bde-f2a7-11df-b179-001cc4c03286.html

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Local MS patient finds help far away

Brenda Ahearn/Daily Inter Lake Justin Wilbert, 31, of Kalispell, at his home on Tuesday. In the background is one of the sites Wilbert found providing information on Liberation Therapy. Wilbert traveled to India in August to have the experimental surgery and has had a marked improvement in his condition. 

Justin Wilbert, 36, of Somers had never been on a commercial airliner before he flew to New Delhi, India, in August — on borrowed money — for a radical surgical treatment for multiple sclerosis.

He was not disappointed by the results.

“My vision improved a ton and my legs don’t feel like they’re 50 pounds and full of concrete,” Wilbert said. “My pain is dramatically decreased.”

Although his neurologist warned him that the balloon angioplasty procedure had not been studied or approved for multiple sclerosis by the FDA, Wilbert decided to take the risk based on numerous Internet testimonials from MS patients around the world. From his perspective, he had little to lose.

“I went two years when I could hardly see — I was in and out of blindness,” he said. “I became bedridden and completely blind.”

Along with taking his sight, the disease had numbed his hands, feet, legs and torso and subjected him to agonizing nerve pain. Wilbert became confined to a wheelchair about two years ago.

It was a devastating development for a young man with an active lifestyle just five years ago. After growing up and attending Bigfork schools, Wilbert worked in Oregon for a few years, then returned to the Flathead Valley in 2003 to work with his stepfather in a tile-setting business.

He vividly remembers the day symptoms of the disease first appeared just before his 31st birthday. Wilbert and his girlfriend Katie Halcro were headed out of town on vacation.

Near Hot Springs, he noticed something wrong with his right eye.

“You know when you’re going down the road and you see heat waves?” he asked. “I saw them for the whole trip. When I went back to work, it was so bad I couldn’t read a tape measure. Then I went completely blind.”

Wilbert went to an eye doctor, then an eye specialist who referred him to a neurologist. After tests including an MRI that revealed lesions on his brain and spinal column, he received a diagnosis of multiple sclerosis on Oct. 15, 2005.

From that day forward, Wilbert began searching for a cure for this central nervous system disease that damages patches of protective myelin sheath covering nerve fibers in the brain and spine.

With electrical impulses disrupted by damaged myelin, multiple sclerosis manifests as a variety of symptoms such as fatigue, visual and speech impairment, numbness, nerve pain, weakness and much more.

“Every person has it differently,” Wilbert said. “My sight went quickly and I continued to deteriorate. My walking got really bad, then I had no feeling in my hands.”

He began spending 23 1/2 hours a day in bed from the overwhelming fatigue, getting up just long enough to eat a small amount. His weight plummeted by at least 50 pounds.

“One whole summer, I couldn’t use silverware,” he said.

Although Wilbert tried every prescription drug and alternative treatment thought to help, nothing made much difference except Tysabri, a drug with a risk of a brain disease. The disease — progressive multifocal leukoencephalopathy — is rare but deadly and the risk increases after multiple infusions.

“It’s basically a mold that grows on your brain and you become a vegetable,” Wilbert said. “I took it for 36 months.”

He credited Tysabri with getting him out of bed and improving his sight. But Wilbert worried as each infusion of the drug bumped up his risk. Wilbert said he wasn’t afraid to die but he didn’t want to lose his mind in the process.

His search on the Internet for a better alternative was rewarded on Nov. 9, 2009. He watched a Canadian television news show about chronic cerebro-spinal venous insufficiency, a syndrome in which blood flow from the brain and spine to the heart is compromised or reversed, a process called reflux.

“There was a new finding that most people with MS had stenosed (narrowed) veins in their necks,” Wilbert said. “It can be like a twist of a kink or a platelet that grows across.”

Italian Dr. Paolo Zamboni proposed a theory that malformed blood vessels caused toxic iron deposits in the brain, triggering an immune response and degeneration of the myelin sheath.

Treatment begins with angiography to confirm the syndrome followed by a balloon catheter threaded through vessels to the narrowed area, then inflated to open up the vein — called the liberation procedure.

“It’s exactly what they do for heart disease,” Wilbert said. “They go in from the femoral artery.”

Wilbert began researching clinics in the United States, Poland, Bulgaria, India and Costa Rica. He was on a waiting list for a New York clinic when he discovered Safemedtrip.com and Medanta Medicity, a New Delhi hospital that performed the liberation procedure with no waiting list.

“They arranged everything,” he said.

His neurologist expressed his reservations about the procedure and his safety but helped him by writing a letter to expedite his visa.

A friend loaned him $6,500 to cover for the procedure and about $5,000 more for travel and hotel expenses. According to Wilbert, a doctor who performs the same half-hour operation in San Francisco charges $80,000.

On Aug. 29, Wilbert and his girlfriend boarded a plane for a 30-hour flight to India.

“I never went outside in India. They don’t have handicapped accessible anything. The poverty is unbelievable,” he said. “The people were unbelievably nice and the hospital was super high tech. They all speak pretty good English.”

Wilbert was admitted to the hospital on Aug. 31 for a full range of imaging over three hours, followed by the liberation procedure.

“It’s a super simple thing that should be available to everyone,” he said. “It was painless.”

Wilbert felt immediate results with a feeling of warmth returning to his feet and sensation to his hands. In his hotel room, he was astonished to see his image in a mirror for the first time in years.

“I thought, ‘Am I really that scrawny,’” he said.

His appetite and energy soared by the day after the procedure as his pain diminished. Wilbert said he went from taking three to four pain pills a day to three to four a week.

“When I first got back from India, I loved going to bed,” he said with a smile. “I couldn’t wait to see what miracle I would find in the morning.”

After returning in September, he has had one treatment with Tysabri. The next week, he consulted with his neurologist and stopped his infusions.

Wilbert said his improvement has continued at a less dramatic pace. He has no regrets about the operation and would do it again if his blockages return.

“Where mine were, they almost never re-stenose,” he said.

His friends have organized a benefit Saturday at Buns by the Lake in Somers to help repay the cost of the trip to India as well as to spread the word about this procedure. Wilbert said patients in Canada and Australia are holding rallies to get government approval for this operation.

When people question if his results are simply from the placebo effect, Wilbert said he doesn’t care why it worked.

“I just know it works and that’s all I know,” he said. “I think a person with MS would be a fool not to get this.

Wilbert welcomes people to call him for details at 857-2235.

Reporter Candace Chase may be reached at 758-4436 or by e-mail at cchase@dailyinterlake.com.

I qualify complaining as a  post that opens with criticism  and does not offer constructive insight or positive action steps.  Bloggers can be very helpful in voicing concerns and highlighting ineffective practices.  However, as an “expert” if they don’t offer a better path, savvy readers will seek counsel and conversation elsewhere.  Last week, I read a post that discussed everything a PR expert cannot do.  One of the main complaints in this blog discussing client relations was “I cannot read your mind.”   As it was written, the blog left me without useful information or advice for this common problem.  It would have gone from complaint to worthwhile with a few pointers on innovative techniques for helping clients communicate more effectively.

There are many very worthy sites–I would like to recommend Valley PR Blog (www.valleyprblog) as a source for timely, targeted discussion for the Phoenix public relations market.   I also suggest researching what the respected professionals and media in your network are reading and following follow on sites like Twitter and Facebook.    Today, there are innumberable sites available in the world of social media–it is critical to invest in writers with an intuitive voice and viable advice.

In fact, her comments are a common complaint and a serious concern.  Why doesn’t this reporter take my calls or return my emails?  What do I have to do to be heard?  How do I produce the results my client deserves?  The answer is that a strong pitch is developed from listening, not speaking.

I learned this crucial, elemental truth in my first public relations internship.  I worked closely with an experienced professional who delivered me from the traditional coffee making duties, and gave me the opportunity to start pitching.  Before I ever touched a phone, she took time to show me the basics of researching writers before I handed them a story.  She helped me understand listening to the media translates to reading what they write; going beyond taking their title and beat off of Cision and understanding their interests.

With her guidance, I scoured magazines, newspapers and websites to gain an understanding of who was covering issues relevant to our client.  I developed background knowledge on stories written by editors I wanted to approach.   I did the homework and then I pitched my story.  Happy ending? Yes–as an intern, I secured placements with major media outlets including The Washington Post, Family Circle, Life & Style and many more.

For today’s PR newbees, the climate is even more difficult for pitching–the media does not have time for off-target pitches and is quick to share that fact.  Current editors and reporters are doing the job of three people and it is essential to respect their time and provide them useful resources.  If it is not a good approach for their beat, be creative and find a unique angle that fits into their focus or don’t waste your time and their patience.  Through your research, learn to recognize what is and is not newsworthy and work with your clients to develop material that will interest the media.  These strategies will assist you in building a solid foundation of contacts which will serve you throughout your career.

The great news about my friend is that she is resilient, talented and intelligent.   I believe with a little time and direction she will be scoring big hits with broadcast.  I applaud her resourcefulness and desire to try a more effective approach instead of giving up.   She is one of many new to the field and certainly not the first to have legitimate questions.  For all the public relations professionals with years of experience, take time to share a little wisdom with someone starting a career in our industry.  It will certainly make their work more enjoyable and help the public relations field build a stronger relationship with the world of media.

This dilemma of proper balance between the old-fashioned approach and the revolutionary networking methods is well-illustrated in the recent hit movie, “He’s Just Not that Into You.” Before you groan, hear me out.  Drew Barrymore’s character laments that men use ten different forms of communication to reject her but what’s the real issue? She never meets any of these potential suitors and the human element is buried in a pile of emails, text messages and MySpace comments.  She finally discovers love with a man she has worked with for months over the phone.  What’s the difference?  They sit  down for coffee and surprise!–we have a happy ending.

I know this is not a traditional communications case study but the film is centered on the basic concepts of human interaction-what works and what fails.  Public relations is based on the foundation of human interaction and certain messages translate through both the social and business realms.  Therefore, I believe this comedy offers wise insight into an increasingly complicated world.   Social media is a powerful and necessary tool but it is not a replacement for developing connections in person.

Charolette Risch recently blogged on the Valley PR Blog about the necessity of networking and how crucial it is to a healthy business plan (http://www.valleyprblog.com/advice/now-is-the-time).  I can’t agree more.  While it is a time investment, the rewards  you reap are likely to be not only personally fulfilling, but professionally fruitful.  So, go on, stretch your legs, get out from behind that computer and practice your handshake.  It’ll give you something legit to tweet about today.

Discussion will center around the following themes: Three steps to the “simple” truth for effective PR; Development of an Effective PR Strategy and Plan; Cast Studies of Truth Based Public Relations; 20 Cost-Saving PR Tips (as stated on the ASBA website).

The event is free for ASBA members, $20 for non-members and will be held from 8:00am-10:00am at ASBA headquarters:

ASBA
4130 E. Van Buren St., Ste. 150
Phoenix, AZ  85008
Detailed Map

As the end of school strikes fear in the hearts of 2009 graduates, I would like to offer a little comforting news to our newest wave of public relations professionals. Cash flow is out there if you are willing to think outside the perimeters of the traditional entry level position

While large corporations and boutique agencies alike have had to reduce staff numbers to survive, many are still in need of assistance on overflow projects and smaller accounts.  I have found that many firms in my area can not afford the cost of a full time staff member (benefits, vacation, pay, etc.) but may still have some dollars in the budget for the occasional helping hand.  As a professional still relatively new to the field, freelancing not only pays the bills, it brings in more income than many full-time positions available to those with limited experience.

If you decide freelancing is for you, it will require the all the tenacity of a job hunt–permanently.  As a new graduate, you will not have the advantage of a network and it is the most crucial piece in a successful business model.  Attend any and every event you can in your area–I specifically recommend the local chapters of your PRSA and IABC branches.  While this may not yield immediate work opportunities, it will serve you long term and if you’ve chosen public relations, it will likely be an enjoyable part of the process.

In recent networking, I have gleaned some great information about what agencies are seeking in a freelancer.  The largest frustration expressed in these conversations is shortage of great writers in the freelance pool.  With this in mind, I encourage you to seek a mentor from your networking events and begin getting feedback on your writing and AP style.  If writing is not your strongest asset, dedicate the time and energy it takes to become a solid written communicator.  Poor language construction, spelling and grammar errors, and inattentiveness to the small details will be a deal-breaker.  As a freelancer, you must be able to deliver a product the agency feels confident will exceed the expectations of their client.  Build a reputation as a precise writer and you can count on excellent references when it comes time to land the next opportunity.

Another skill to hone is the craft of research.  You can do this by discovering what freelancers with your experience are charging, what firms are in your area and what fields they specialize in, and what the media from major outlets are covering.  The cliche is “Knowledge is Power” and it will never be more true to you than as a new professional.

Overall, freelancing may be unconventional compared to what you dreamed of as a college freshman, but it allows you the freedom to learn new things daily and to challenge yourself (not to mention working from home and a flexible schedule).  Good luck grads-remember, options are out there if you are willing to go after them!