4 posts tagged “neurological disorder”

Getting to know our 2014 Team of Advisors – Becky

Posted November 10th, 2014 by

So far, we’ve introduced you to two members of the PatientsLikeMe Team of Advisors – Dana (bipolar II) and Lisa (Parkinson’s). Today, say hello to Becky, a retired flight nurse who is living with epilepsy and three years out of treatment for breast cancer.

About Becky (aka Rebelor)
Becky is a former family nurse practitioner, medically retired from military service. Used to a life in service, Becky is always prepared to get up and go, so when we called upon her to participate in the Team of Advisors, she was ready! When describing her journey with epilepsy, Becky said her initial complex partial seizures felt like divine intervention—she was waiting for the big answer or revelation, but the seizure would end just before discovery. Unfortunately, her journey with epilepsy collided with a journey with breast cancer, but she’s three years out of treatment and doing great. Becky uses her GI Bill to study philosophy, religious studies and creative writing.

Becky’s view on patient centeredness
Becky believes patient centeredness is the “holistic consideration of a person beyond gender and race. The cultural, spiritual, situational picture of the test subject.”

Becky on being part of the Team of Advisors
“Being a member of a meaningful team is time well spent. I can still contribute in some way to the greater good. It means that there are still things I need to do and be a part of despite my challenges. For anyone who has an illness or disability, you have to widen your world to help others. That is what ultimately will help you. When I was at my very worst, my husband told me I needed a new hobby. I was in medical offices 2-3 times a week, and now it is once a month. That is progress I can see!”

Becky’s military background
“I’m a retired Flight Nurse and started my military career in 1976 as an Intelligence analyst in the U.S. Army. I was initially assigned to Fort Bragg in the 7th Special Forces Group and went to jump school at Fort Benning in September of 1976. I made a total of 16 training jumps between school and my 3-year enlistment. I left the Army and started a family, but returned to the Air Force Reserve in Tampa as a Flight Nurse. I deployed in support of Hurricane Hugo, Desert Shield and Desert Storm, where I worked in the Aeromedical Evacuation Control Center in Riyadh, and then in this faraway location in a Mobile Aeromedical Staging Facility.

In 2003 I was activated and deployed to Europe as the Director of Operations for all aeromedical evacuation from OIF and OEF. It was an enormous job that took me from England to Germany, Spain, Italy and Kuwait. I flew 300 missions on the C-141 and C-17, moving 10,000 patients from forward areas to the U.S. After my return to the U.S., I had to return to my civilian job as a Family Nurse Practitioner. It was very difficult to manage the deployments and military career with my civilian career. My last 5 years in the military I worked at USSOCOM as a Family Nurse Practitioner and the chief of the clinic. 25 years of service. I was medically retired from the Air Force after I started having seizures in 2008. I am an alumnus of the Wounded Warrior Project, and my husband is the President and CEO of America’s Warriors Partnership.

As a female veteran, I am very much concerned about how we handle multiple roles, including transitioning to the civilian world and managing health and relationship issues. I am now using my GI Bill to return to college. Because of my epilepsy and breast cancer that followed, I have noticed a significant decline in my memory and cognition. I am using this opportunity to return to the academic world as a neurocognitive therapist. I’m not sure it is working, but it is challenging me.”

Becky’s passion for Veteran’s issues
“My passion with veteran’s issues is to connect with anyone who has served honorably and is in need of some support. Sometimes, we just need a little drill sergeant telling us to stand tall and carry on. Most of the veterans I know are silent warriors who have successfully returned to their communities and grown into new lives, taking with them the lessons of military service and training. There are some who have been injured in some way or are ill that need extra support, and that is where the Augusta Warrior Project or many other veteran support organizations can be very helpful.

The VA is not equipped to mentor and coach veterans through the turbulent times of life in the same way that many organizations can, but my belief in holistic healthcare is totally ingrained and I know it works. There has to be continuity and someone who understands the system and you. That is why I believe in the advocacy and support offered by some community based veterans programs like the Augusta Warrior Project, the Care Coalition at USSOCOM, the Wounded Warrior Project. They have to be comprehensive in their approach to advocate for a veteran, educate and assist them through school, ensure they have access to health resources and help them become successfully employed. All of this takes an all-knowing mentor over time! The benefits are there, they just aren’t user friendly!”

More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.

So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.

Share this post on Twitter and help spread the word for epilepsy.

 


Recognizing Multiple System Atrophy (MSA Parkinson)

Posted March 20th, 2012 by

In observing Rare Disease Day at the end of February, we talked how there are 7,000+ conditions that are categorized as rare diseases due to their lower prevalence (less than 200,000 people in the US).  Today we’d like to spotlight one of these lesser-known conditions:  multiple system atrophy (MSA), which affects 536 PatientsLikeMe members and approximately 50,000 Americans.

A Snapshot of the MSA Parkinson Community at PatientsLikeMe

There are no celebrities with MSA, nor is there a high-profile nonprofit organization driving awareness of the disease.  Instead, MSA patients have organized themselves through a “Miracles for MSA” Facebook page and determined grassroots efforts.  They’ve also designated March as Multiple System Atrophy Awareness Month.  Their goal?  “We want to reach everyone affected by MSA and have them join us here to make our voices even louder next year.  Together, we can make miracles happen for MSA.”

What can you do to help?  Learn about MSA and help spread the word.  Previously known as Shy-Drager Syndrome, MSA affects middle-aged men and women and advances rapidly with a progressive loss of motor skills.  It is very rare for someone to live 15 years with MSA.  One of the common symptoms is stiffness, similar to what’s seen in Parkinson’s disease.  As a result, MSA is considered a “Parkinson’s plus syndrome,” but it does not typically respond to Parkinson’s treatments.

See MSA’s devastating symptoms firsthand – including losing the ability to speak and swallow solid foods – in this moving YouTube video made by the daughter of a MSA patient.  It’s been entered in the 2012 Neuro Film Festival from the American Academy of Neurology, with winners to be announced April 22, 2012.