Tag: handicapped

Family

Tips on Parenthood for People With Disabilities

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Tips on Parenthood for People With Disabilities

Joy and jitters often go hand in hand for people who find out they will soon become parents through birth or adoption. After all, parenting is a costly commitment that lasts a lifetime. Parenthood for people with disabilities, the apprehension may be amplified when they consider the unique child care challenges they could face.

But there are tools and techniques to help parents get the best of those barriers, and plenty of support from experts and other parents who’ve grappled with — and overcome — some of the same obstacles. If you are dealing with a disability while preparing for parenthood, here are a few things to consider as well as suggestions for support.

Parenthood for people with disabilities
Quadcapable with his daughter

Making Modifications

You may have already made some modifications to your home to make it a better fit for your needs. Still, parents-to-be need to take a fresh look at their surroundings while keeping the new challenges of childcare in mind.

For instance, if you have mobility issues, you might eventually consider having a backyard fence installed to help keep kids safe while they are playing outdoors until you can reach them. More immediately, installing grab bars in bathrooms could make bathing a baby more manageable if you have balance and mobility issues, according to HomeAdvisor. And opting for non-slip flooring in baths, kitchens, and other areas where wet floors could present a hazard, especially while carrying a squirmy baby or toddler, might be an essential investment that will also benefit babies as they learn to crawl and walk.

Childproofing Challenges

And, as babies get more mobile, it could be necessary for parents who use wheelchairs to take special precautions to keep kids safe. For instance, you may have hazardous items stored in lower cabinets to make them easily accessible for you. That means you’ll need to be especially vigilant about storing them in childproof cabinets or containers once curious babies start crawling. And wheelchair-accessible stoves, drawers, and countertops may also mean easier access to common kitchen hazards for inquisitive toddlers. So it makes sense to start researching, trying out, and installing safety gear well before babies discover stove knobs, knives, and common cleansers that they might want to taste test.

Sources of Support

Although these considerations may seem daunting at first, there are a number of resources available to help prospective parents with disabilities address any unique obstacles they might face. Your healthcare team may be able to offer advice or refer you to specialists who can teach you adapted techniques to tackle common childcare chores in a way that will be safe and effective for both you and your little one. Some programs may even offer home visits to help parents-to-be assess spaces and equipment with childcare safety and simplicity in mind. These experts may make recommendations for assistive technology and adaptive equipment, such as wheelchair-accessible cribs or specially designed strollers and baby carriers, to help with common tasks.

Making modifications and investing in adapted equipment can be expensive, though. Fortunately, many government agencies and nonprofits offer assistance in the form of grants, equipment loans, and more. The U.S. Department of Health and Human Services might be a good place to start when researching resources.  Similarly, local and national nonprofits such as Through the Looking Glass may provide consultations for parents with disabilities to make them aware of services available in their area. And innovative parents have also figured out ways to safely modify standard baby gear to suit their needs, with many offering their ideas online.

So, with some research and reaching out, you can be better prepared for parenthood, regardless of your disability. Indeed, adequate planning will help you feel confident and comfortable enough to let those feelings of joy push pre-parenting jitters to the background.

Ashley Taylor 

ashley@disabledparents.org

disabledparents.org

 

Gaming

Quadriplegic PC Computer Setup Gaming Workstation

| Charles Merritt

Quadriplegic PC Computer Setup Gaming Workstation


Thanks to Stack-up.org & The Dept. of VA

It has taken me some time to develop a workstation that not only allows me to work from the comfort of home, while playing my favorite video games; but, also enjoy a bit of independence. The Quadriplegic PC Computer Setup Gaming Workstation Project ( and the new build) will hopefully motivate others to seek aid when needed to accomplish their computer setup goals. I also posted links to the equipment that I am putting together and currently using, down below.

pubg quadstick Quadriplegic PC Computer Setup Gaming Workstation

The Quest Begins

In Aprilish, 2017, I began communicating with organizations in hopes to upgrade my Quadriplegic PC Computer Setup Gaming Workstation.  That PC wasn’t able to provide the performance needed for the type of activities necessary: voice recognition, gaming, streaming, working, video-rendering, photo editing, etc..

First, I reached out to the Department of Veterans Affairs assistive technology department to find out if they could satiate my needs. Upon following up, was told it had been submitted to contracting, “and awaiting approval.”  So I then patiently waited for 4 to 8 weeks to confirm such approval.  Never received it.

Next, I sought to hopefully be sponsored and obtain a computer from another source. Gaming PC companies here in the United States. I also reached out to the Wounded Warrior Project out of Pittsburgh who told me of a charity called Stack Up.

Quadriplegic PC Computer Setup Gaming Workstation

https://quadcapable.com/quadriplegic-pc-computer-setup-gaming-workstation/
L: Shadow R: Cuddles

During this period, I continued to stream and do my thing with my laptop (provided by the VA) and volunteered my time to help the Stack Up organization as a game lead, along with becoming part of the Redshirt Raiders Discord. Circa October, I received a phone call from Houstongirlgotu, Orlando Stack Lead, notifying me She had a Stackup T-shirt to drop off. After several hours of small talk about everything under the sun, another knock came at the door. Two other Stack Up members Cuddles & Shadow came to my door surprisingly holding a computer.  I learned later, it was a custom built PC just for me!

Rigs 4 Vets (My Streaming Rig)

Motherboard MSI M-ATX H110M
CPU i5-7600
DDR4 2666MHz Memory- 16GB (32GB (2x16GB))
NVIDIA GeForce GTX 1070 8GB
SSD 256GB
ELGATO PROHD 60

Rigs 4 Vets is a program that I had not known about but would come to appreciate. Stack up gave me a great gaming computer that night. I have since made that PC into a stream computer after little less than two weeks later out of the blue a computer from the VA showed up (my current game PC). I believe I mentioned to Houstongirlgotu before the surprise about how many places I had gone to obtain a new computer and that they would probably, “come all at once.” Which, they kind of did.

Quadriplegic PC Computer Setup Gaming Workstation

Quadriplegic PC Computer Setup Gaming Workstation

Current Gaming PC (Dept of VA)
Motherboard ASUS X299 TUF MKII ATX
CPU i7-7740X Processor Overclocked (Overclocking (4.9 -5.2GHz)
DDR4 2666MHz Memory- 32GB (32GB (2x16GB))
MSI AERO 8GB OC GTX 1080
SSD 256GB M.2 Solid State
Optane None
CPU Cooling CORSAIR Hydro Series H100i V2 Water Cooler
Windows 10 Professional 64-Bit

The Florida Stack…

has gotten together numerous times since the upgrade. I stream regularly on my own channel, daily, twitch.tv/Quadcapable. Also through the stackupdotorg channel,  Fridays 4 pm EST, in support of their mission and to contribute what I am able. I’m currently infatuated with upgrading and bettering my system. Starting to piece together a newer rig, as a Marine, always seeking the best.

Luckily, I was able to find a new home for some of the components from Stack Up. Re-donating the remains to another veteran, x7sage7x. Had the chance to also use those same components with my daughter. Transferring them to a new case and detailing the work on PC Part Picker.

Get AFTER IT!

Just remember if you want something; never stop fighting for it. You can always find good people to help you get it done. If you have questions about any of this, please let me know so I can help you too.

My article on Stack-up.org: Rigs 4 Vets – Quadcapable gets an Upgrade!

Cant use your hands? Check this out!

What You Should Get My Recommendations

CPU Intel i7 8700K 3.7GHz 6 http://amzn.to/2nq5sRU

Motherboard Asus ROG MAXIMUS X HERO http://amzn.to/2iJQXGN

Memory G.Skill Trident Z RGB 32GB (4 x 8GB) DDR4 3200 http://amzn.to/2BFECIB

Storage Samsung M.2 pcie nvme 256 960 pro-evo http://amzn.to/2idY0E2

Video Card MSI GeForce GTX 1080 Ti 11GB GAMING X http://amzn.to/2BG1s2E

Case Thermaltake View 31 TG ATX Mid Tower Case http://amzn.to/2jIgrkv

Power Supply Corsair AXi Series, AX1200i, 1200 Watt 1200W 80+ Gold Certified Fully http://amzn.to/2icjpx5

Monitor BenQ 24 inch 144Hz eSports Gaming Monitor, 1440p, 1ms http://amzn.to/2jH6NyC

Monitor BenQ 27 inch 144Hz eSports Gaming Monitor, 1440p, 1ms http://amzn.to/2nraXzK

Other Asiahorse Wireless RGB LED 120mm X 3 Case Fans 3 pack http://amzn.to/2AmELSU

Other CustomLoop Purchased For $500.00 Misc n/a

PartPicker Build Log

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.

Click Here to Donate through PayPal Directly from My Website.

Donate Now through Go Fund Me

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

Power Wheelchair

Make Your Insurance Pay for a Standing Power Wheelchair

| Charles Merritt

Make Your Insurance Pay for a Standing Power Wheelchair

Please Feel Free to Use the below Email As a Template

For most wheelchair-bound individuals walking or standing can be not only of great physical therapy but also mental therapy as well. However, there are barriers for the average person in a power wheelchair and manual wheelchairs restricting their ability to obtain a wheelchair that will assist them in standing. Make Your Insurance Pay for a Standing Power Wheelchair.

I received my first power wheelchair while an inpatient rehab at the James Haley VA spinal cord injury center which was a Permobil C400. As a letter below will describe several issues arise from sitting all day and not being able to stand. Given my level of activity even as a C3 complete quadriplegic my medical condition necessitates standing to relieve some of the symptoms and chronic issues I was having.

How to Make Your Insurance Pay for a Standing Power Wheelchair

I’ve tried to list the steps below based on my experience. However, because I use the VA your experience may differ through Medicaid-Medicare-Private Insurance but what remains the same is identifying issues you have from not being able to stand and then obtaining documentation from your doctor advising it is medically necessary for you to stand more often and independently throughout the day.

What made a great difference for us was the difficulty of using a standing frame. Typically, the first thing insurance will recommend is a standing frame. But, to reap the benefits of standing you must be able to do it often. My issue with the standing frame is that it took two individuals and about an hour to get me into it with the Hoyer lift.

How to Make Your Insurance Pay for a Standing Power Wheelchair

Step One.

Realize You Need a Standing Wheelchair.

Do you have bowel and bladder issues? Circulatory issues? Social issues?

Step Two.

Identify Chronic Issues You Have That Standing Would Decrease.

Frequent UTI?

Inconsistent  Bowel Program?

Blood Clots?

Step Three.

Put This Information in Writing and Submit to Your Primary Care Doctor.

Here is a great resource for finding solutions to some of your chronic medical issues through the use of the power standing wheelchair.

http://www.rstce.pitt.edu/rstce_resources/rstce_res_doc/resna_position_on_wheelchair_standers.pdf

Step Four.

Follow-Up (Most Important Step)

Contact the doctor once you’ve sent the information to ensure they receive it and then follow up on a weekly interval to find out where they are at in the process. You may be able to contact your durable medical equipment (DME) provider or your insurance provider as they may give you specific instructions regarding your particular chair.

Step Five.

Be patient

Rome wasn’t built in a day. It takes time and some persistence to obtain expensive medical equipment especially when dealing with government agencies and especially civilian doctors and insurance. Feel free to comment in the section below and I’ll do my best to assist you in any way possible.

My letter to the doctor:

Dr. name omitted,

 

(Name omitted) I am writing to you in regards to a request for a standing wheelchair to replace my current power chair due to medical necessity. It’s come to my attention that I would need to provide proof of medical necessity to the KT department in order to obtain a standing wheelchair. Specifically the F5-VS from Permobil which is the model the VA typically issues. I have put a link below to the Rehabilitation Engineering & Assistive Technology Society of North America (RESNA) position on wheelchair standing devices as well for your review. Although it’s obvious you understand the benefits of standing because of seeing your desk 🙂

 

In regards to my specific case the following applies over the past year:

  • history of UTI (two of which led to a hospitalization)
    • standing allows for proper and more complete voiding of the bladder
    • “Urinary Tract Infections Urinary Tract Infections (UTI) is the third most frequent complication for clients with SCI  , and a frequent secondary complication for many other wheelchair users. Prolonged immobility causes hypercalcemia, increased urinary calcium output  , and also reduces bladder emptying . By reducing contributing risks, standing wheelchairs have been shown to reduce the occurrence of UTI for wheelchair users , which could lead to kidney infections”
  • history of bowel obstruction (one incident lead to hospitalization)
    • “Bowel function. Some users have experienced improved bower regularity, reduced constipation, and lesser occurrence of accidental and unregulated bowel movement as a consequence of using wheelchair standers . Elimination of chronic constipation and significant reduction in bowel care time has also been shown as a result of frequent standing  . Chronic constipation can lead to bowel obstruction, a dangerous condition often requiring surgery. Unregulated bowel movements can lead to fecal incontinence at a time when the client cannot be cleaned by a caregiver, increasing the risk of developing pressure sores.”
  • circulatory issues chronic swelling in feet and legs (history of clots)
    • “Users have also experienced improvement in lower extremity circulation as a consequence of utilizing a wheelchair stander . Some benefits are reduced swelling in the legs and feet.”
  • history of blood clots resulting from poor circulation
  • history of pressure sore
    • “Pressure sores When fully standing, pressure is 100% relieved off the Ishial Tuberosities (ITs). However, when tilting or reclining, there is only partial redistribution of pressure underneath the ITs. Pressure ulcers are the primary complication for people with SCI , and many other adults who sit in wheelchairs all day long. There is evidence that users have suffered fewer pressure sores while using standers  , or integrated wheelchair standers .”

 

Having the ability to independently stand intermittently throughout the day would vastly improve/reduce the issues above as stated by RESNA in the accompanying link. It is RESNA’s position that wheelchair standing devices are medically beneficial for wheelchair users by: enabling them to reach; improving ADL abilities; enhancing independence and productivity; maintaining vital organ capacity, bone mineral density, circulation and range of motion; reducing tone and spasticity, the occurrence of pressure sores and skeletal deformities; and enhancing psycho-social well-being.

 

I have proven the ability to tolerate standing as I have used the standing frame however due to the nature of that equipment and my active lifestyle I’m not able to use it in a capacity that would be as helpful as a standing wheelchair. Also it requires at least two caregivers or helpers to assist me while the wheelchair allows me to be independent.

 

The above represents a small portion of all the benefits from regularly being able to place myself in a standing position. Thank you for your consideration and your time I look forward to speaking with you regarding this issue.

 

http://www.rstce.pitt.edu/rstce_resources/rstce_res_doc/resna_position_on_wheelchair_standers.pdf

Make Your Insurance Pay for a Standing Power Wheelchair

 

Thank you

Charlie Merritt

C4 Quadriplegic

Check out My Blog quadcapable.com

Facebook.com/quadcapable

Tweet me @quadcapable

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.

 

A day in the life

Ivanhoe Media Project Xavier

| Charles Merritt

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

 

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!

Opinion

People Are Assholes

| Charles Merritt

People Are Assholes

I want to believe that people are inherently good and want to do good things. Only until recently I’ve learned that people are assholes. Not to say there are not good people out there that care and don’t attempt to take advantage of everything that comes their way. But unfortunately I have to say there is a little bit of asshole in all of us. No pun intended. Now to what degree you are an asshole fluctuates from person-to-person and in some it is hardly detectable. However, it is there waiting for the moment to jump out and show you its true color. To those that can control it and keep it buried deep inside I applaud you because most are just waiting to seize the opportunity to be the asshole they were meant to be.




Now I am a little bit jaded and given my current circumstance of being a quadriplegic I may be more so than ever before. I do have a good outlook on life and I stay positive most of the time. But sitting here as I do I began to notice that there are two types of people I run into. The first type are the caring people that have their asshole buried deep inside and fight to keep it down. The second type are assholes. Unfortunately it is hard to point these people out because they are camouflaged to look like type ones. So here in lies the problem we have in society today where we can’t tell a true asshole from a person or group of people who are trying their hardest not to be assholes.

Back to the point. Over the course of the last 1 ½ years directly following my injury I’ve had “friends,” “trusted” employees, and perfect strangers do their best to be assholes to me. What bugs me about this the most is that before my injury none of these people or persons would have been this way. They were the first type of people whom put in a certain circumstance showed how big of assholes they could be. To inform the world or whoever reads my blog and Facebook posts I would like to give you a few examples from my own personal life. I guess that’s what a blog for anyways.

Here are some of the most blatant assholes in my life over the past year in no specific order. The girl that moved in to help my fiancé while I was in the hospital who decided to pawn all of my tools along with the jewelry I bought for my fiancé the Christmas before. Giving her an opportunity of amnesty she denied any wrongdoing even though we had the evidence from the pawnshop. She is now on probation. This happened over the first six months I was in the hospital. Bear in mind I paid this girl every week for her assistance, fed her, and let her live in my house. Before the injury she was considered a friend.

So second asshole in my life recently. When I was released from the hospital I began to work from home and hired a past employee to assist me in the day-to-day of my business. In some instances she was left alone in particular when I was admitted to the hospital again for sepsis. Upon arriving home my laptop, and my fiancé’s jewelry which we had rescued from the pawnshop was missing again. And of course everyone denied. During this period we were also moving to a new house so I allowed this assistant to work from home and use one of my desktop computers to do so. We then filed a police report on the previously missing items and included anyone who had been in the house including this assistant and we have not heard from her sense. She still has my work computer and phone.




I believe these two had buried there and are assholes previously but given the circumstance it fought its way to the surface and their true asshole spewed out. Maybe if I wasn’t handicapped people would be less likely to show their true asshole to me. Unfortunately the subconscious asshole believes different. Don’t get me wrong I am an asshole to. To most it can’t be seen but to some it shines bright like a highly polished rodeo belt buckle.

There are many assholes that I have left out that I come in contact with on a daily basis like the home health aide that left two hours early today into her four hour shift without getting me out of bed and after talking on her phone for at least one and a half hours of the time she was here. I guess people think I’m helpless because of my injury. They believe I have no ability to act, and that I don’t have the means to follow through. They could not be more wrong. They do not know me. They don’t know that I will persevere, I will endure, and I will win. So to all the assholes, you need to watch out. I’m not as handicapped as it may seem and believe it or not we live in a world where you can still get punched in your mouth for being asshole.

 

Show you’re not an asshole: donate to the cause by clicking here

I wholeheartedly believe in the below product and use it on a daily basis. If you’re looking for a great speaker, home automation device, or a really cool toy click the link and buy it you won’t regret.

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

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