Tag: Ellen DeGeneres

Alive Day

Alive Day

Alive day

August 23, 2014 is the kind of day you don’t forget. Like a birthday, wedding anniversary, high school graduation, and the birth of a child you do not forget the traumatic events that change the course of your life, without consent, forever changing how you live. On my Alive Day, several years ago a seemingly innocent dive from the bow of my boat altered my life forever. But this is more of a telling of what came afterwards and not a call for pity.

Since my alive day I have:

  • Cheated death several times during my hospitalization.
  • Come to the realization that the VA healthcare system is superior to any civilian run spinal cord facility.
  • Realized the depth that my friends and family care for me.
  • Made many great new friends.
  • Used my personal experience to raise awareness for people living with spinal cord injuries.
  • Continue to be a partner to my fiancé and father to my three girls.
  • Received assistance from all types of sources. Including: Paralyzed Veterans of America, Chive Charities, Department of the VA, Stack-Up, The Internet
  • Renewed my faith in family, particularly my parents who have been more helpful than I could’ve imagined.

My Alive Day

Besides advocating for people and doing the charitable work that I do I have not changed that much. My fiancé Tina may disagree with that; but my mental character and capacities seem to be the same. It’s very important to understand that catastrophic injuries do not have to alter the type of individual you are, or the type of life you live. It definitely should not stop anyone from getting up every morning and facing the day just like anyone else. I’m no more an inspiration or hero then the person who works and takes care of the family. I just do it without hands.

Make sure every day that you meet your potential, hug your loved ones, and don’t put off anything that means anything. Life can change literally in the blink of an eye. #Charliestrong

Alive Day Video

[embedyt] https://www.youtube.com/watch?v=UZhHReD4j8g[/embedyt]

A day in the life

Grad School for Charlie

| Charles Merritt

Two short years ago I was Considered by the VA as being catastrophically injured(C3 complete quadriplegic) during a seemingly harmless dive off of my boat into 5 feet of water. Little did I know that dive would change my life forever and catapult me into a whole new way of thinking.

These types of accidents and injuries tend to careen people into certain directions. The 1st direction is one of depression and of always asking “why me? “The 2nd direction is just trying to live your life one day at a time and be as happy as possible. The 3rd, and my chosen, direction is that of placing a person in a position to become passionate for a cause and to escalate their understanding for advocacy and helping others with a similar injury.

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Since the accident I’ve been motivated to keep my family living a comfortable life and to also inject myself into as many positive roles to assist others that may need my knowledge and experience. In particular I become involved with the Paralyzed Veterans of America here in central Florida as a board member. I’ve attended several functions to promote awareness for spinal cord injury diseases and disorders nationwide and locally. I created a blog to share my story and hopes to help others quadcapable.com and I assist whomever I can whenever they ask. Sometimes I even help when they don’t ask.

To continue pursuing my goals I feel further education is necessary and I want to show others in my condition or with challenges that no matter what “if there’s a will there’s a way.” I hope to inspire people with a never quit attitude and an understanding that no matter what there is a community out there that will help you all you need to do is ask.

So I am asking my community to assist me with pursuing a Masters in Business Administration at Stetson University here in Deland Florida. Unfortunately I have applied for a myriad of grants and scholarships and I’ve come in so far but fortunately there is a community behind me that I hope will back me up and see my track record in the goals I have already accomplished will support me in this effort. I have already been accepted and currently enrolled to start school on Tuesday, August 30 with a deadline to pay this semester’s tuition by October 15, 2016.

Thank you
Charlie Merritt
#Charliestrong

Anniversary

Anniversary of My Injury August 23 2014

| Charles Merritt

Today is the kind of day you don’t forget. Similar to a birthday, wedding anniversary, high school graduation, and the birth of a child you not forget the traumatic events that direct your life in a direction without your consent and forever change how you live. Make sure every day you meet your potential, hug your loved ones, and don’t put off anything that means anything. Life can change literally in the blink of an eye. ‪#‎Charliestrong‬

 

Clinical trials

Would You Trust This Guy? Mistrust Leads to Lack of Participation in Clinical Trials.

| Charles Merritt

PARTICIPATION IN CLINICAL STUDIES. OR LACK THEREOF.

As I sit here staring at the rain falling outside my bedroom window I noticed that as quickly as it began it has gone away and the sun is shining. I am sure there is a specific meteorological reasons for this which I have no idea about but it makes me think that as quickly as an injury or ailment comes with the right settings it can be made to go away.

This article is meant as an update to my current participation in local trials here in the United States. Also motivated by recent conversation I had with the Miami Project to Cure Paralysis concerning a clinical trial that I am eligible for through their program. Curiously enough I wondered how many people affected with spinal cord injury are participating in the studies and decided to do some research online. Unfortunately with spinal cord injury research there is not a lot online as far as statistical data to analyze the percentage of participation occurring. I did however find interesting statistics concerning cancer and the participation in clinical trials.

Specifically it showed that a higher percentage of adolescents are participating in clinical trials for cancers and with only a 3 to 5 % participation 10 million adults affected with cancer. I would assume that parents of children with cancer are more likely to attempt experimental trials to save their children as opposed to adults with cancer being willing to subject themselves to the same trials. With research showing that all treatments and breakthroughs we have found were birthed from clinical trials why are more people affected with these diseases contributing their time to assist in finding new treatments? From my own personal experience over the course of the last year and in speaking with other spinal cord injured individuals I’ve come up with some conclusions.

TRUST OR LACK THEREOF

Distrust of the medical system in general seems to be one of the major concerns of individuals with incurable diseases and participation in clinical trials. Mistrust: According to a review conducted by the Agency for Healthcare Research and Quality mistrust of research and the medical system is a frequently reported barrier to participating in clinical trials.

Most U.S. adults agree that clinical research participants are making a significant contribution to science. However, 49% also feel that clinical trial participants are gambling with their health and are treated like “guinea pigs.” (Counsel)

What leads to these feelings of mistrust from my perspective is lack of knowledge and ignorance of the clinical trial process specifically here in the United States which is governed by the Federal Department of Agriculture “FDA” and heavily scrutinized and is a process that has been proven to provide treatments and output successfully providing specific treatment goals for a spectrum of diseases and injuries. Specifically a majority of these clinical trials are done by private organizations, universities, and are not run by government scientists looking to squeeze information out of our brains. For the most part the government just regulates trials they do not become involved in them.

LACK OF AWARENESS

A national survey of cancer patients found that 85% of respondents were unaware that participating in a clinical trial was a treatment option for them. (Counsel)

With clinical trials regarding spinal cord injury it is almost as if you only hear about them in whispers and or the possibility or I saw this on the Internet or I watch this video etc. it’s difficult to know what trials are available for from the onset of a spinal cord injury because of the traumatic experience. The University of Miami conducts trials for individuals within nine hours of injury but if you’re not in Miami you don’t know about this if you are Miami you may not know about this. The most popular would be the Christopher and Dana Reeve’s Foundation that is thrust upon anyone with a spinal cord injury but for my own personal experience has not offered anything besides a free book.

So how do we go about raising awareness putting this information in the faces and hands of the people affected by these types of injuries to ensure that they know where to go, what to do, what the requirements are, and how they can become involved with clinical trials?

First and foremost people like me and others with spinal cord injury have to help each other. This is a new form of brotherhood that unless we band together will continue to be an incurable one. We must spread the word however we can to others affected by paralysis to ensure they receive correct information and encouragement to participate in trials. Individually we must be prepared to ask for help, ask for donations, put ourselves in uncomfortable situations that allow for us to put together the logistical and economic parts of being a part of these trials.

I implore everyone who knows someone affected with spinal cord injury to encourage them to seek out clinical trials which can be found here: WWW.CLINICALTRIALS.GOV

I’ve noticed a trend in areas that are heavy in spinal cord trials one being the University of California Los Angeles, Ohio, Miami, and for veterans the Bronx VA and James Haley VA in Tampa.

WWW.MIAMIPROJECT.MIAMI.EDU is a great resource as well and allows for walk-ins which I was over a month ago and immediately I was able to become part of the trials going on there.

I plan on going through every one of these trials that I possibly can and with the help of family friends and complete strangers and some blessings from God I will get to them.

To donate to my cause go to:

GET A T-SHIRT: www.booster.com/cure-paralysis

This fundraiser runs until October 2 so get your T-shirt while supplies last.

MAKE A CASH DONATION: www.gofundme.com/strongman-Charlie

You can also donate through PayPal www.Quadcapable.com/donate

 

Thank you for your interest in my article to connect with me:

Facebook.com/quadcapable

Twitter @Quadcapable

Check out other articles www.Quadcapable.com/quadblog

counsel http://iccnetwork.org/cancerfacts/ICC-CFS11.pdf

 

A day in the life

My Daughter’s Letter to Ellen DeGeneres

| Charles Merritt

Daughter of Quadriplegic’s Letter to Ellen DeGeneres

My oldest daughter took it upon herself to write Ellen DeGeneres and I have taken the liberty to place it here. Something about the way she writes always moves me. To help out go here. Daughter of Quadriplegic’s Letter to Ellen DeGeneres:

Hello there Ellen!

I am a typical teenage girl; I get in trouble with my parents for going to small parties, I stay up late on Twitter and I love my family. However, one thing that isn’t so typical about my life is that my step-father, Charlie, became a quadriplegic last year. Quadriplegic means that your arms and legs are paralyzed. My step-dad has been a role model for me and my family since he came into our lives in 2005. He served in the United States Marine Corps, he was a powerlifting champion in 2014 and he is the best Father he can be 110% of the time.

Nobody knew that simply diving off of our boat in the Gulf of Mexico would cause such a huge impact on our lives. The water was too shallow. After dying 6 times, being on a ventilator to breathe, me and my little sister missing weeks of school, my mom coming to her wit’s end and 8 grueling months in the hospital he made it home.

Bedside with Charlie
Bedside with Charlie

Making Our Lives More Accessible

Our house was outfitted with ramps, fancy voice-controlled lights, medicines nobody could pronounce, different kinds of wheelchairs and most importantly, a fully intact family. The doctors told us that he would most likely never be able to move any of his extremities ever again, that fact has still held true to this day. Charlie is 36 years of age. He is so determined (he always has been) to get better and be himself again. Nearing the year anniversary of the accident, he is getting quite bored of being a quad. Even with all of his voice controlled computers, tablets and televisions that the Veterans Affairs has so so so generously provided us with, it can never compare to being able to do everything on your own.

Daughter of Quadriplegic's Letter to Ellen DeGeneres:
Not great

Learning to be a Caregiver and Daughter

Me, my little sister Katelynn, and my mother Tina feed him, put him to bed every night, get him up every morning, get him sips of water, push his stomach when he needs to cough, scratch his head because it feels so good to him and we love him with all of our hearts. Luckily my mom is a nurse so it has made this whole ordeal much easier; she does so much for him and is often stressed (but who isn’ t stressed these days?). This story isn’ t just about my step-dads bravery and fight to live, or my moms dedication and perseverance, my little sister (15 yrs) wanting to sell her kidney to be able to pay for him to get stem cell research or me just trying to make this easier for everyone; its about being here for each other. Not just family but everyone who cares about something.

After the accident…

we made a GoFundMe account, 98 people donated about $7900 dollars. Everyone came together to help just one man that needed it. It was beautiful and inspirational. But being a quad is not cheap and as I said before, Charlie is tired of it. He has been looking into Stem cell research in India and various other countries. The price of this can range from 50,000 to 80,000 not including housing and food in a foreign country.

It’s been a long year Ellen. One step forward and 5 steps back!

Daughter of Quadriplegic's Letter to Ellen DeGeneres
Most of the Family

A quadriplegic woman that had seemingly worse injuries than Charlie was fortunate enough to try out methods done by Doctor Schroff in India and within 3 months she was working on walking again! Aside from those issues, we have been renting a beautiful house in Deland Florida for 2 years now and we found out that the owner of the home hasn’ t been paying the mortgage since 2010. So the bank took it, a company bought it and we got an eviction notice today. We either have to buy it or move. It’s been a long year Ellen. One step forward and 5 steps back!

Charlie is so Funny and Positive

He could make you laugh within the first 30 seconds you talk to him. Don’ t know exactly what you can do to help but everyone seems to have faith in you at times like this. Even simply sharing his GoFundMe on your show or website could make a huge difference, although I feel like Charlie could give a lot of hope and happiness to your viewers.

We are supposed to make a funny MTV Cribz video showing off all of his rides (wheelchairs) and post it on Facebook to make people laugh. You would really like him, Ellen. I used to have dreams to be a veterinarian or be famous or to be beautiful. I have one dream now, it is to have my dad be able to walk me down the aisle. I hope we are worth your time Ellen and thank you for giving us hope.

 

Charlie’ s Website: quadcapable.com

To Donate and Help Charlie and His Family Click Here