I’m so grateful to Chive Charities for all their help in obtaining some of the equipment I can use on a daily basis to assist my fiancé and caregiver in their day-to-day activities getting me in and out of bed and a great night sleep next to the woman that I love. It’s awesome to know that there are people and organizations available to assist people with spinal cord injuries and a myriad of other diseases and disorders. The fact they also single out veterans and their programs is just another example of how great The Chive community is. I’m appreciative of being a part of it and hope to be so for many years to come.
-Chive on
Here is the link to my story:
My Story Link
Tag: crowdsourcing
Happy Halloween
Happy Halloween
Grad School for Charlie
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
Standing Wheelchair F5 VS
Very excited. Was just fitted for my F5 VS standing wheelchair from perMobil. There are a myriad of health benefits when being able to intermittently stand during the day independently. For me I am hoping to help with constant UTIs, bowel obstructions, circulatory issues, and more.
Ivanhoe Media Project Xavier
Transcript
Charlie Merritt’s reality shattered in an instant on a sunny august day in 2014
0:06when he broke his neck diving into shallow water I remember floating in the
0:11water
0:11face down and basically feeling like I was going to drown paralyzed from the
0:17neck down the former Marine has been able to get around only with the help of
0:21his wife and inexpensive motorized wheelchair but enterprising mechanical
0:27engineering students at the University of Central Florida had a better idea
0:31since we’re all students at first it’s a little scary cuz we see this device that
0:35we made being used by somebody then we see it works perfectly pretty much lost
0:39the it’s an amazing feeling they created a 3d device that controls wheelchairs
0:44with simple facial movements sensors attached to muscles send electrical
0:49commands to direct charlie’s chair I’m not burdening the people around me to have to use their assistance
1:09unlike other disability devices the college senior design project which is
1:13not yet being mass-produce is very affordable this device will cost less
1:17than $400 compared to several thousand for similar designs I’m already saw
1:23reporting
Would You Trust This Guy? Mistrust Leads to Lack of Participation in Clinical Trials.
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
Three Things Not to Do As a Quadriplegic
There are many hurdles living life as a quadriplegic for the most part a lot of them are similar to your average everyday ambulatory person. Obviously relationships, money, and day-to-day tasks etc. for the void that is our 24 hours a day life. There are certain things I found to be helpful when it comes to living life as a quadriplegic and in general. These aren’t specific to my injury but my situation is a great example of how to stay positive and always look forward.
1. Stop looking at the world as what you cannot do and start focusing on what you can do.
If there’s one thing I’ve learned through this injury despite my therapist’s persistence that I can do everything I did before is that I cannot. Understanding that simple fact has lead me to a greater acceptance of my limitations but also an increased motivation to improve on what I can do. I’m not saying to not strive for the unknown or for the impossible don’t stop shooting for the stars because you can wind up on the moon what I am saying is to not dwell on the negatives but focus improving positives.
2. Stop being so proud and allow people to help you.
So many people walk through life, no pun intended, feeling as if they are alone for no better reason than being too proud or afraid to ask for the help that they need. There are so many things we can do as human beings if we group together there is power in many but steps need to be taken by the individual to build upon the community. If I was told a year ago that I would be asking for help or donations for myself I would’ve laughed in your face but I realize now that it is not about that, it is about being a part of something bigger than yourself. That in itself is very powerful.
3. Don’t take your frustrations out on those people.
Probably the most important thing because of the situation you find yourself in as a quadriplegic you may feel like lashing out. I’m sure a lot of us feel this way without adding to it the frustration of not being able to use your arms and legs. When I feel frustrated I attempt to put myself into a meditative state of retrospection in hopes to find resolution to the current problem. For me that usually means asking others for help whether it be the people in my immediate circle, groups am involved with, or my network of friends and family. But what I do not do is blame others for my issues for my problems for my handicaps I do not treat them like any of this is their fault and I make sure I own my decisions whether good or bad.
Funny thing is while writing this I was served an eviction because my landlord didn’t pay her mortgage so bad things come and is not about the hurdles put in your way or the walls that life throw up it’s your ability to run and jump to move around to find answers and keep moving forward that defines you. So stop dwelling on what you cannot do and start working on and proving the things that you can.