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The Soldier and the Squirrel introduces children to the Purple Heart

through a loving story of a friendship between a newly wounded soldier

and Rocky the squirrel with his backyard friends. This story began as a

blog during my first year in bed after my incident. With much

encouragement, it is now a book and has been placed in the

Ronald Reagan Presidential Library & Museum. Please watch the video

on the About page to learn for the Soldier & Rocky are changing children's

lives.

 

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Tuesday
Jun272017

Blues Shoes

Silly Blue tried out her first pair of shoes as we are heading to Scottsdale where temps soar to 122! She finally mastered them but not without a rocky start. I think she was just attempting an imitation of a platypus, you decide!

Tuesday
Jun272017

My Stem Cell Procedure and Why It's Different 

We are driving through the Arizona desert from Los Angeles on our way to Scottsdale for my Transplant tomorrow morning! Finally, my Stem Cell Transplant is here! Some have asked how it's possible to have this done in the United States. This doctor is the ONLY doctor FDA approved in the US to perform this very specific type of Stem Cell Transplant. Normally you can have cells extracted in the US then spun and sent to a facility in Cancun for example where your actual transplant would take place days later. It would cost around 20g and require multiple sessions 4-5 times over a period of a year or so. Both of these issues make it extremely difficult for most any chronic pain patient. 

Dr. Malan specialized in this protocol in Europe and has performed over 3,000 procedures. The FDA certified Dr. Malan to perform this procedure in the US due to its success and with it considered a 'trial' to discover the safety and efficacy of the reintroduction of Stem Cells to a patient and the long term effects of doing so. That said, this is how his protocol differs. Instead of 5-10 million cells, he extracts a hundred to hundreds of millions at one time, and transplants them in the same day, a 4-6 hour process, and on an out-patient basis. One time. One procedure. Your progress is then followed over the following five years to be documented in the trial. 

This type of stem cell transplant is autologous cell therapy -Stromal vascular fraction- containing adult mesenschymal stem cells concentrating on treating degenerative or inflammatory conditions. Approximately 90% of pain is caused by inflammation. One effect of this procedure is the elimination of inflammation, damaged cells, and the promulgation of healthy cells literally rebuilding the body where it's needed. The cells intuitively know where the inflamed areas of the body are and like an army march in to repair. Along with the IV Transplant, he also creates a Stem Cell Paste and will coat the affected area of my spine. Many people have asked if this is the kind of therapy a cancer patient might look into. It is not. A patient with active cancer is not a candidate for stromal vascular fraction deployment research. 

The conditions for which I am undergoing this transplant are Arachnoiditis (the hardening and bonding (by turning into plaque) of  the nerves within the dura of the spinal cord, as well as CRPS or Complex Regional Pain Syndrome of the spine. Both of these conditions are above childbirth and phantom limb on the McGill Pain Scale. Both are considered incurable, but if can have phases of remission.  

 

I have tried every possible treatment under the sun (well, my sun anyway) and have researched Stem Cell treatments for three years now. It wasn't until a dear friend of mine, Tootie (yes her personality is reflective of her name!) introduced me to Dr. Malan after she underwent his Stem Cell protocol for Arachnoiditis in her spine and CRPS (of her foot). Talk about a friend you can relate to! Hers was about three months ago. Our lives had paralleled with bed containment or laying prone 80-90% of the day - although she still did everything in her being possible to still trudge through each day, the tears were never-ending behind closed doors. We've endured flares requiring repeated hospitalizations and spinal contractions lasting weeks to months at a time every 10-20 minutes around the clock. An existence of survival more than that of a life. Although we both have tried our best to make the most out of our situations, putting on a brave face for our loved ones and living for life between flares, never in our wildest dreams did we ever think there could actually be hope. Real hope. 

Within 48 hours of Tootie's transplant she could move the toes in her affected foot that hadn't moved since 2003, and she is now back to living the life she dreamed of - up at 8am and until 10 at night. Now, this doesn't mean she is completely out of the woods, that pain episodes are gone forever - our conditions are complicated and the post-operative healing process is a roller-coaster with 6-9 months on Colossus, but her world is actually hers again. She is once again the mother and wife she wanted to be for so long.  She smiles from the inside, not with just a painted expression for others to appreciate. 

Her heart is lighter and most days seem shorter as they are now something to enjoy rather than endure. All of this I hope my life to be, and I'll have her to thank for everything my life might be able to become. And for once I sense the a stir in my core that seems to occur when God has a plan in mind. Whatever the outcome I have never been more ready to have faith not only in the plan, but in myself and everything I believe I can be. 

 

http://www.mystemcelltherapy.com/

 

 

 

 

 

  

Monday
May222017

Service Dog Denied Virgin Atlantic Update

As of May 15, 2017 Virgin Atlantic has replied to my letter that they are looking into properly training so this 'never happens again'.

 So, not exactly implementing a training program....

 Dear Mrs Bensko

 Thank you for your email of 15th May with your thoughts and comments.

 I am grateful that you brought this incident to our attention and am truly sorry that we let you down. Whilst it arose as a result of a genuine mistake, as I said in our telephone conversation, we have launched an immediate investigation and review of our training for our customer facing teams, to ensure that this does not happen again. The action we are taking goes beyond simply sending an email as you mention.

 I am sorry that you feel the gesture offered to you was note appropriate. It was made with the best of intentions to replace your poor experience with a very positive one.

 Once again, I apologise on behalf of Virgin Atlantic and sincerely hope that you will allow us to restore your faith in our service.

 

With best regards

 

__________

 

_________ ___________

Executive Vice President – Customer

Virgin Atlantic


This is just a first step in trying to eradicating a national virus affecting our disabled population from within the corporations of our travel and service industries.

I have written to Senators Feinstein and Harris, filed official complaint with Department of Justice and Transportation who have opened an official investigation into the discrimination and violation of the Air Carrier Access law (the equal of and predecessor to the Americans with Disabilities Act). To ensure this momentum continues forward I am supported by an invaluable dream team of individuals:

 

Heather Ansley Associate General Counsel for Corporate and Government Relations at Paralyzed Veterans of America (PVA) works to promote collaboration between disability organizations and veterans service organizations by serving as a co-chair of the Consortium for Citizens with Disabilities (CCD) Veterans Task Force and was instrumental in the development of the 1973 Air Carriers Act of America. 

 

Marca Bristo founder of Access Living and an international advocate for the rights of disabled individuals. During the 1980s, as a member of the Congressionally appointed United States Task Force on the Rights and Empowerment of Americans with Disabilities, she helped draft and win passage of the Americans with Disabilities Act. In 1994, President Clinton appointed Bristo to head the National Council on Disability, an independent federal agency that provides policy guidance to the U.S. President and Congress. Bristo was the first person with a disability to hold this position. Today, as President of the United States International Council on Disabilities, a federation of US disability organizations committed to fostering Disability Awareness inclusion and rights overseas, she is leading a campaign to promote the ratification of the UN Convention on the Rights of People with Disabilities in the United States.

 

And James Weisman, who is now my official representative, is president and CEO of - and general counsel for - the United Spinal Association and a dedicated advocate for over 38 years who also helped expand disability rights and ensure access to transportation for wheelchair users across the country. 

 

It is essential that ALL individuals who have been subject to discrimination in our airline industry post their story to this Air Access portal: http://www.airaccess30.org/. These WILL be used in PVA's current and on-going advocacy efforts on Capitol Hill. You WILL be heard. Without these stories the odds for change are insurmountable. 

 

Also, here is a link to the regulatory docket for DOT's efforts to amend the service animal regulation under the Air Carrier Access Act: https://www.regulations.gov/docket?D=DOT-OST-2015-0246. Please submit your comments and ideas for proposed legislation here. Again, these are not lost in a virtual world but are tangibly used to submit necessary legislation expanding the reinforcement of the rights of service animals nationwide. 

 

Again, thank you everyone for without each and everyone of your comments, shares and voices, none of this could have been put in motion on very personal journey to just for each and every Disabled American in search of not only acceptance, but even more importantly, justice. 

 

 


Tuesday
May162017

News Agencies Bringing Awareness to Our Story



 

Tuesday
May162017

Progress Since Service Dog Denied

Today has made leaps forward in progress. Essential first step was understanding ADA violations and it's boundaries vs the ordinance of the ACA (Air Carriers Access)Where this falls in regard to Civil Rights violations, etc. Am speaking with various entities actively submitting legislation in support of access in the airline industry. Assessed where my incident falls in regard to airline violations as well as state vs federal. Discovering where to concentrate so the greatest impact can occur without spinning wheels (so to speak). Got in contact with several disability rights organizations including PVA (Paralyzed Veterans of America) and am hoping my story (although I know there are a million others) might be of assistance in any of their pending legislation as well as fostering of new regulations. Screaming from the mountain top, even if my wheels are getting caught up in the crags here and there. Each step forward is because of the invaluable information so many of you have sent me. Thank you for uniting together in the creation of this battle plan for disability rights. Marching on!

Monday
May152017

Open Letter Re Denied Entry at Virgin Atlantic


Open Letter Re Service Dog Denied at JFK

 

Friday
May122017

The Washington Times

Virgin Atlantic responds after disabled woman says she was barred from lounge over service dog

Virgin Atlantic has vowed to remind staff about its policy regarding service animals after a disabled California woman says she was denied entry to the airline's waiting lounge because of her dog. Micaela Bensko, who is handicapped due to chronic pain issues following a 2011 car accident, told Fox News that she and her dog, Blue…

Friday
May122017

Virgin Called

Video of Incident: https://www.facebook.com/bensko/videos/10155175306050256/

The Executive VP of Virgin Customer Relations from London has called. We had a rather lengthy conversation. I do believe he is genuinely remorseful, and his apology well meant however I'm afraid I'm still too raw, physically exhausted and emotionally drained to engage in what they 'can do to for me to make this right'. My emphasis remains upon the fact that this lack of proper training goes well beyond Virgin and spills throughout our entire US fleet of domestic airline companies. He explained their employee as having an impeccable reputation, I countered that this goes beyond how well someone follows policy and well into the fact that the humanity is no longer allowed a seat at the service table. Virgin has always placed its emphasis on creating a new and improved culture, which is what makes this event even more exasperating knowing it can even happen with them. Employees are trained to stay cool and hold their ground without any leeway for empathy or sensitivity to the human condition. One explanation this most likely occurred was that the employee probably assumed that the international flight rules applied to the Virgin Atlantic Clubhouse in that all service animals require documentation, and it was the Virgin Atlantic lounge in which this occurred. However, once again, here's our plight as to our ADA rules and regulations not being implemented properly. Their lounge is in the general population area, not in an international terminal. To board an international flight of course there is a litany of steps in the proper protocol such as vaccinations, a letter confirming it's a service animal more so to prevent any issues along the way and one should have it translated into the language of the country you're visiting, etc but this Lounge is used by anyone eligible for entry flying on Virgin Airlines and clearly on US soil. This is the exact type of oversight occurring in today's training. Virgin truly wants to "make it right" with us. I'm talking it over with Blue but she seems as exhausted as I am. Virgin wants to show and express to us how very much Virgin does care for its passengers and asked me what I would need to make it right. I said what I need is for you to please join me in taking a stand in making a statement that this type of treatment and corporate culture is not okay and it needs to change. The conversation, though well meaning, reverted to what Virgin itself could do to prove to me they truly do care for their passengers. I sensed a resistance of willingness to join me for this swim in our toxic environment of airline swamp water. They are a London based company with other concerns I am sure. I gave him my answer as to how to make it better in requesting Virgin take this moment to take this moment with me to be an example of a corporation self-correcting. He assured me he sent out a notification ensuring this will never happen again on Virgin and I do believe his personal intentions are true. This company was founded by Richard Branson, one of the greatest humanitarians of all time. My dialogue with Virgin is not closed, this is all about opening the conversation. But making it better for me is far from why I took this stand from my chair. He stated that in the eleven years he has worked there he has never witnessed any so atrocious. I voiced that the reason you don't see it, or hear about it is there are millions of people every single day who experience such humility at the hands of someone's nephew in a hat and a badge who feels empowered by their status in the rankings of customer domination. The disabled community is too tired from simply trying to exist on this planet to be writing letters and complaining to a ceiling made of titanium. This call was from a human being, I can sense this and appreciate the fact he reached out to me personally. It's just that this is going to take much more time and healing both physically and emotionally for me to utilize my energies in any other manner than to try so very hard to promote change for the population of disabled individuals of which I'm so very proud to belong. 

Thursday
May112017

Virgin Atlantic Lounge Denies Us Entry


 Click for videoAll of us have experienced it. An airline employee more robotic then human. We have all seen the videos of late. A man dragged down the aisle, a mother and her child sideswiped by a stroller. These have us all up in arms. We think we have seen it all and then there's more.

 Watch Video Here: http://youtu.be/b3BK0WUx7vs

My service dog Blue Belle and I were denied entry to the JFK Virgin Atlantic lounge due to their 'policy' and the 'possible discomfort of others'. Three employees stood behind the counter, not just one uninformed employee. This lounge is not a luxury for me, flying in a lay-flat seat is not a luxury but a financial burden and a necessity. My condition is Arachnoiditis and Complex Regional Pain Syndrome of the spine. I am also in a wheelchair so every step of a travel plan must be carefully laid out with crossed and dotted eyes. I read every policy, I compare it with ADA laws and regulations. I call customer service and speak to human beings to make and confirm our (mine and Blue Belle's) travel arrangements. Blue Belle wears her vest clearly marked with 6"x2" panels that say SERVICE DOG. I carry her vaccination papers with me at all times as well as pay the extra $75 to be in the airline's lounge for even one hour because sitting for any extended period of time (which can mean 20 minutes if I am in a flare) can send me to the hospital with spinal contractions with levels on the McGill Pain Scale above childbirth or phantom limb. If I am not already in a flair, this can send me into one. Stress can also be a contributing factor to this. I am not telling you these things for a pity party, it is simply the reality of millions of forgotten or dismissed individuals others shy away from from it takes too much energy to see.

I am not jumping on a bandwagon. I have simply experienced these excruciating episodes while traveling one too many times. You might call it death by a thousand cuts. This is my story from last night - one I am physically unable to hold within and hope it can somehow spark a change in how airlines and corporations train (or in this case, don't train) their employees as to the federal laws mandated specifically to protect the disabled.

 

I hope my experience opens this conversation much needed between the airlines and the ADA community.

 

#AirHumanity

 

Micaela Bensko

www.FriedNervesAndJam.com

Friday
Apr212017

BREAKING NEWS: New Drug for CRPS 

Article is from www.PainNewsNetwork.org

Whenever I see articles about CRPS or advancements in studies regarding it, there is always a conservative excitement as we never know what's going to stick. However, this one seems to be getting more attention than others and the article itself is very interesting.  Any and every bit of progression in the awareness of CRPS and studies of it, are another step forward in our journey toward the light. I mean that in a good way, not the 'we're passing over to see the pearly gates and meet God kind of light. Just want to clarify that.

Pain News Network

By Pat Anson, Editor

The U.S. Food and Drug Administration has designated an experimental drug as a potential breakthrough therapy for Complex Regional Pain Syndrome (CRPS), a chronic and disabling neurological disease for which there is no cure or treatment.

Neridronic acid was discovered by Abiogen Pharma, an Italian drug maker, and is jointly being developed with Grünenthal, a German pharmaceutical company. 

The Breakthrough Therapy designation by the FDA came after the companies reported the results of a Phase II clinical trial showing a significant reduction in pain and symptoms of CRPS with neridronic acid treatment. The drug has already received fast track and orphan drug designations from the FDA.

The agency considers a new drug as a breakthrough therapy if it is intended to treat a serious condition and if preliminary clinical evidence demonstrates substantial improvement over current treatments. There are no current FDA approved treatments for CRPS, which is also known as Reflex Sympathetic Dystrophy (RSD).

"It is very encouraging to see that the FDA recognizes the urgent need for new treatments for patients with CRPS and has granted neridronic acid the status of a Breakthrough Therapy. This supports our efforts to develop an efficacious treatment option to these patients,” said Klaus-Dieter Langner, MD, Chief Scientific Officer of Grünenthal. “We are committed to working closely with the FDA to bring neridronic acid to patients with CRPS as fast as possible.”

In the Phase II study, neridronic acid or a placebo was administered intravenously to 464 patients with CRPS type 1, when the disease is in its early stages. The study ended in November.  

A previous study of 82 CRPS patients in Italy found that those who were treated with infusions of neridronic acid experienced significant and persistent reductions in pain.

Neridronic acid is currently being evaluated in a Phase III clinical trial. If successful, the drugcould be the first FDA-approved treatment for CRPS, which is characterized by severe, burning pain that usually begins in the arms or legs after an injury or surgery. The pain often spreads throughout the body.

"Grünenthal is highly dedicated to improving the lives of patients with pain as well as rare diseases with limited treatment options. This is an area of high unmet medical need,” Gabriel Baertschi, CEO of the Grünenthal. 

The company recently purchased Thar Pharmaceuticals, which is developing an oral form of zoledronic acid for the treatment of CRPS. That drug is also undergoing a Phase III study.

Neridronic acid is an investigational aminobisphosphonate. According to the Reflex Sympathetic Dystrophy Syndrome Association (RSDSA), bisphosphonates have been used for years overseas to treat CRPS.

“We need options and if this can help patients and encourage other medications and treatment options to come onto the market for CRPS’ers, it’s a great thing,” said Barby Ingle, who suffers from CRPS/RSD and is President of the International Pain Foundation. 

“We saw with fibromyalgia and Lyrica that once it (fibromyalgia) had a medication designated it gained more awareness and acceptance in society, leading to better access to care. The same could happen with a CRPS designation for a medication, leading to greater treatments and a cure in the future.”