Tag: veteran

Support the EMPOWER Care Act and Community Living

The American Association of People with Disabilities (AAPD) is a convener, connector, and catalyst for change, increasing the political and economic power of people with disabilities.

AAPD power button logo
Support the EMPOWER Care Act and Community Living
Join Today’s National Call-In Day!

Money Follows the Person (MFP) is a Medicaid program that has helped over 75,000 people with disabilities and seniors move out of nursing homes or institutions and back into their communities. MFP restores the dignity and liberty of people with disabilities by promoting and supporting choice and community living.

Funding for the MFP program expired in 2016, and states have already scaled back their plans by approximately 40%. We need your help and advocacy to get the Senate and House of Representatives to pass the bipartisan EMPOWER Care Act (S.2227 and H.R.5306), which would extend and improve the MFP program. Last year was the first time that the number of people that transitioned to the community had declined.

By passing the EMPOWER Care Act and funding the Money Follows the Person program, Congress can help more people with disabilities transition out of institutions and nursing homes and back into the community. Without action NOW, more people will be trapped in institutions.

Help people living in nursing facilities and other institutional settings move back into their communities!

Take Action

Use the advocacy tool below to send an email, tweet, and Facebook post directly to your Senators and Representative to tell them to support the EMPOWER Care Act and fund the MFP program.

Click here to contact your Members of Congress

The letter is already written just a few clicks goes a long way!

Charlie Merritt: My Story on Chive Charities

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

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

 

A day in the life

Standing Wheelchair F5 VS

| Charles Merritt

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.

 

Just for laughs

Handicap Accessibility in a Galaxy Far Far Away

| Charles Merritt

A long time ago in a galaxy far far away…accessibility experts toil away ensuring the Death Star meets all of the Imperial requirements for disability access. We all know the story as told by Lucasfilm’s and now Disney from the perspective of the all capable Jedi Knights however from my viewpoint I look at Star Wars a little differently and I found myself wondering how I would make my way around the galaxy in my wheelchair. So I set out to have a few questions answered: “are the stalls on the death Star accessible?” “How do the handicap Ewoks make it through their forest village high up in the trees?” “Are there tiedown straps in the Millennium falcon?”

Using my intergalactic search tool i.e. my laptop and Google to see if I could find any evidence that the Empire or the resistance kept any standards for handicap accessibility was pleased to find they did. However in some instances fell very very short.

Apparently the “evil” Empire does issue wheelchairs to their veterans. As evidenced in this picture.
Handicapped storm trooper

Once a Jedi has trained an apprentice they move on to some deserted planet old folks home.

and even the fastest bucket in the galaxy got an accessible ramp thrown in.

But leave it to the little furry guys on Endor to get it all wrong.

No elevators here!

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

 

Opinion

Opinion: Pitfalls of US Stem Cell Research

| Charles Merritt

According to the NATIONAL INSTITUTE FOR SPINAL CORD STATISTICS there are currently 270,000 recorded spinal cord injuries in the US alone. Increasing at a rate of 12,000 annually our particular percentage of the population is minuscule (1). Which leads to the first pitfall for US stem cell research for SCI (spinal cord injury):

  1. Because of the small percentage of SCI in the US and globally funding for traumatic spinal cord injury treatments and trials are limited. For example two of the major contributors here in the US are private organizations. Both Christopher and Dana Reeve’s foundation as well as the Miami Project To Cure Paralysis are privately funded organizations with their founders being a quadriplegic themselves (2) (3). How do we expect to find a cure without proper funding from government? It’s my opinion that the biggest contribution from our government is the restrictions placed on research by the FDA. Thus further slowing the process of not only treatments for spinal cord injury but dozens of other illnesses from ALS to blindness.

Recently I made a trip to the Miami Project and spoke with one of the individuals directly involved with Schwann cell clinical trials. Currently after two decades of animal trials the FDA finally approved human clinical trials for thoracic and soon cervical patience. However some requirements have led to very few SCI patients being accepted into the trials. For instance out of 500 only 2 were accepted want to cover requirements is the scar on the spine or the lesion can be no bigger than 2 cm (4). Also the FDA only allows for C-5 and reason below to be a part of any study regarding stem cells and spinal cord research here in the US. So the second problem is:

2. The requirements to be a part of any clinical trial first themselves the US rule out 99% of SCI patients. And in looking at the amount of time it took to transition from animal to human trials a further transition into widespread human trials appears to be very far in the future.

Unfortunately for us as well the FDA has rejected embryonic stem cell’s due to possible tumor growth (5) but has approved the Schwann cells even though reportedly by themselves do not repair the spinal cord. “Thus, the endogenous regenerative events that occur after injury fail to repair the spinal cord.” (5) which leads to the 3rd problem:

3. We’re using the wrong stem cell’s due to the fear of a possible tumor created from the embryonic stem cells which are the most pliable the FDA has ruled them out.

So what are we to do? Well in other parts of the world certain restrictions do not exist, certain regulations do not carry over, they are doing the research now on the front lines. So we do what all sick people do when we are looking for a cure we become “stem cell tourists.” Meaning we go to the countries that are doing the trials. Currently there are several places including Panama, Thailand, China, India, to name a few. They have paid for ads on Google directing you to their websites where patients have beaming testimonials concerning their treatment and hope for success.

Why isn’t the US on the forefront of this? Why is our country lagging behind on treatments that could heal and save people like me and millions of others with the potential that stem cells create? Is it that big pharmaceutical companies don’t want cures for diseases that leave people taking meds for decades, insurance companies wanting you to be sick wanting to you to pay your premiums wanting to increase your deductibles? I encourage you to look for private companies doing stem cell research in the US most either go out of business because of lack of funding or sell to companies outside the US. Look up Osiris a company in Maryland which recently sold out because of lack of funding. Has money become so important that health takes a backseat in the US?

I want everyone reading this not to look at it as a conspiracy theory but to think realistically about the state of the US and why we are so far behind other countries. Something needs to change, people need to come together, raise awareness, speak out, not just on Facebook, but in the streets rally behind the causes you believe in, be a part of something.

Charles Merritt

if you like what you read and want to help click here to donate.

REFERENCES:

  1. J Spinal Cord Med. 2012 Jul; 35(4): 197–198.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3425873/

2. The Miami Project http://www.thebuonicontifund.com/Page.aspx?pid=201

3. Christopher and Dana Reeve Foundation http://www.reevebigidea.org/

4. http://www.miamiproject.miami.edu/who-can-participate

5.Spinal Cord Med. 2009 Apr; 32(2): 105–114.
hTTP://www.ncbi.nlm.nih.gov/pmc/articles/PMC2678281/

 

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

A day in the life

How I Became a Quadriplegic

| Charles Merritt

THE START

There is nothing better than cruising on your new boat in the Gulf of Mexico enjoying the sun the surf and your beautiful wife (fiancé).  That’s exactly how my day was going on August 23, 2014, and how I became a Quadriplegic. Started off early that morning at my house in Central Florida where we packed up our boat sunscreen everything else we needed and headed to Anclote River Park to put our boat in the water. After a three-hour drive and a stop at Publix to pick up the usual boating drinks, we finally got the boat backed into the ramp.

THE RAMP

The ramp was something we hadn’t experienced before. There was a strong current from the river and when I put the boat in we had our first issue of the day. Once we released the boat from the trailer our mooring line came loose and the boat drifted to the ramp next to us. I jumped in to tried to push the boat as I swam, which wasn’t the smartest move, and our neighboring boaters helped out as well.  Finally, after 20 minutes of struggle, we got her secured to the dock.  Put the cooler in then backed out. We then started moving through the channel to rendezvous with our friends in their boats.

THE MEETUP

Originally, the plans were to meet on the eastern side of Anclote Key. When we arrived at the designated spot there was no one to be seen. Calling one of our friends we found that they were on the western side of the island, the Gulf side. Meeting them in the channel and following him and his wife to the other side of the key.

Anclote Key click update
We have arrived!

THE FUN

It only took us about an hour and three people to get anchored. But is well worth the effort if you see from the picture above just how beautiful it was that day. And yes that is my beautiful fiancée Tina floating in 5 to 6 feet of water enjoying the sun.  Shortly after arriving and a couple dives off the boat later I made one final dive into the water that changed my and my family’s life forever.

THEN IT HAPPENED

I finally accepted my fate.  I couldn’t swim.  I couldn’t breathe. I just floated.

Upon diving into the water I blacked out and then woke up floating several feet from the bow of my boat at that moment I knew something was wrong.   Gasping for air I yelled for Tina who thought I was joking. So I floated there until I finally accepted my fate.  I couldn’t swim.  I couldn’t breathe. I just floated. I was going to drown and die right then.  Thankfully, at that moment our friends noticed me and swam over. They began to pull me to the shore.  Where I could breathe again.  But nothing below my neck was working.  I was paralyzed.

At that point, I called for Tina again and she came to the beach with the rest of us and dialed 911. Shortly after, fish and wildlife, The Sheriff’s Department, Coast Guard, and then the Bay flight rescue helicopter picked me up and flew me to the hospital. After being put on and off two different boats the helicopter was chosen to be the best choice.

THE REST

A lot of the hospital stay was chronicled through my dad’s Facebook page and a fan page set up on Facebook as well. I plan on occupying a lot of this blog with a lot of those posts. Some were very moving.