Tag: Cure paralysis

A day in the life, Adapted technology, At the beach, Awareness, Travel

Being a quadriplegic living with paralysis kind of sucks

| Charles Merritt

Being a quadriplegic living with paralysis kind of sucks

I know what you’re thinking, “well of course it sucks.” And I would tend to agree with that statement because as a whole it does kind of suck. But oh there is a silver lining in that black cloud of quadriplegia. “What?” you say? “There is no way. It looks like a horrible time.” Yes, for the most part the inability to move my appendages leaves me insurmountably frustrated. I have learned in my short time as a handicap to bury that constantly nagging feeling of helplessness. Mainly, underneath a fistful of antidepressants. But I digress. Being a quadriplegic living with paralysis kind of sucks.





There have been many good moments over the last 15 (now over two years) months: I’ve learned a lot about myself, and the people in my life. I have met a lot of great people, joined a couple of great organizations, continued to run my business, started a blog, and continued to meet life’s challenges head-on!

Being a quadriplegic living with paralysis kind of sucks

Being a quadriplegic living with paralysis kind of sucks

This post should provide some insight on what I do every day and in hopes to shed some light on the day-to-day awesome sauce that is my current “new normal.” That’s what the therapist call it when you have a catastrophic injury and have to figure out ways to make your life be somewhat normal.

I define normal as having a sense of purpose. The good thing about purpose it doesn’t take physical attributes to have. You just have to be willing to take action. Breaking my neck and said little change on my purpose. There have been some minor modifications to make sure I can still take action. My day is typically normal and just like everyone else’s.

So I get up and go to work.

This is typically a Monday through Friday thing and I get up. I mean Tina and an aide from the local home healthcare agency get me out of bed, put me in the shower, shave, brush my teeth, and then head back to the bed to dry off and put my clothes on for the day. I am then craned into my power wheelchair with an apparatus similar to what a mechanic uses to lift an engine out of the car. Then I’m off!

Into my home office to begin my day around 10 AM. During the day I am either on the phone, sending or receiving emails, fixing bugs in our marketing, interacting with clients, and all the other day-to-day activities of a business owner. This goes on usually till about 6 PM depending on how much work I have left to do. So for Monday through Friday this is where you’ll find me unless…

Go outside your house.

Lately I have been up to something very exciting. Working with UCF on new wheelchair technology and becoming Central Florida famous. Limbitless Solutions is a nonprofit that helps amputees and now high-level quadriplegic injuries and affects a better life for them and I’m proud to be a part of that. You may have noticed me on the news almost 1 million hits.

Sometimes we have to drive three hours to the Tampa VA to see my doctor. I have work to do for the Paralyzed Veterans of America Central Florida Chapter as the Treasurer that keeps my off time occupied. I am currently planning a poker night fundraiser, a group skydiving event, trying to find ways for the chapter to effectively assist our members, and the list goes on. It may seem like a lot, and it may be, but the one thing all of these have in common is I would not have done any of them without being injured. Some activities have changed but my mission has stayed the same.

I am damn sure not letting the inability to use my arms and legs stop me

Being a quadriplegic kind of sucks

My mission now as it is always been at least for the past decade is to do my best to take care of my family, earn some sort of living, and try to explore all life has to offer. My injury has not changed this it has just changed how I get there. I’ve also been given opportunities I wouldn’t have thought I would enjoy or be as passionate about as I am now.

Being a quadriplegic living with paralysis kind of sucks

I am damn sure not letting the inability to use my arms and legs stop me. So yeah being a quadriplegic kind of sucks but as with anything else you can either overcome adversity or go hide in the closet underneath your blanket and never come out and experience everything this world has to offer. Good luck with that I’ll be skydiving.




Many thanks to love my life Tina goes without her none of this would be possible. You are my lighthouse in the storm.

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