Fundraiser For Robert on May 4th, 2013 !!!!
2-8pm Providence Firefighters Union Hall
92 Printery Street, Providence, RI
Raffle gifts are still needed! Please help the Hinton's. The RI Firefighters Pipes and Drums will be playing at the event.
FOR MORE INFORMATION OR TO BUY TICKETS CONTACT:
Robert Hinton -401-533 -2142/ Jeff Lafontaine- 401-338-4722
Lee Hinton- 401-533-2243/ Jonathan Breindel- 401-391-9207
****See Event Page for more info********
Can't make the event- help by making a donation now.
donations are made using Paypal. No paypal account is needed.
Email Robert at firstname.lastname@example.org- prayer requests are also welcome.
Newspaper footage from Valley Breeze Paper- April 25, 2013.
It began long ago.....
Me with Kayla and Alyssa
It is amazing how long it has been since I developed Reflex Sympathetic Dystrophy(RSD). The car accident was 8 years ago on February 28, 2005. I still remember it like it was yesterday...hearing the metal crushing sounds as my car was slammed into from behind. The jolt I got from that impact changed my life forever..... it took me away from the North Smithfield Fire Dept., Invacare (located in Holliston, MA) were I was selling Medical Equipment. The people I enjoyed being with on Rescue 2 working as an EMT. My life changed forever by someone who was careless. Is it fair...NO!!!!
My wife has been my stregth and my rock in my times of need which are many. My girls, Alyssa(11) and Kayla(9) don't remember a "Daddy" that has not been sick. I have missed all there dance recital shows, family events and more. If you look at me most people say I look wonderful, great and sometimes healthy. The funny thing is that I try so hard to be strong but my body hurts so much on the outside and inside. I have good days and really bad days, like most with RSD. I try to get through it with humor, smiles and saying "I'm fine". The truth is I am tired of the pain that is 24/7. Yes, it never, never stops!!! The burning, shock like, ice cold, stabbing pain....NEVER STOPS!!!!
my right leg showing the dis-coloration from RSD.(photo taken in 2012)
So Now what......
Well.....let me bring you up to speed to what has been going on in my life recently. I have full body RSD/ CRPS, Type 2 with full Internal Organ involvement. I am in Stage 4 RSD. The RSD has spread internally. I recently had to have Gastric Bypass Surgery (which was done on my Birthday) October 26th. The reason for this was because my stomach was damaged by the RSD and loaded with Lesions and scar tissue and dried blood. I also has RSD Lesions on my lungs, brain stem, spinal cord and throughout my entire body. My daily pain levels are between a 9 & 10. I saw Dr. Robert Schwartzman, my RSD physician, on Monday, January 7, 2013 in Philadelphia. The news I was hoping for, remission.... did not come. I was heart broken. I have been fighting against this disease but it is still winning. I have been scheduled for my 4th (5- day) Inpatient Ketamine Infusion at Hahnahmann Hospital in Philadelphia from February 18-23, 2013. Dr. Schwartzman explained that the amount of ketamine from the 5 day inpatient is not srong enough to continue battling the RSD. He explained I am in desperate need of the "Ketamine Coma". I am now waiting to see Dr. Anthony Kirpatric, in Tampa Florida. Dr. Schwartzman explained that Dr. Kirpatric is working on getting the Coma estabilished in The Dominican Republic. The Coma should be up and running there in the next few months.
The Coma is only done with patients that are out of options for RSD treatments. I have thought about this long and hard and agree with Dr. Schwartzman. I need to have this done so I can continue to live. I will still have RSD but my 3 month boosters will then be able to keep the disease in a "remission type state". If I do not get this the outcome is not good. There is no medical coverage that pays for this and it is also being done outside the United States. The costs of the care and travel is in excess of $50,000 US dollars. The RSD has started to affect my fine motor skills, I have lesions on my brain, spinal cord and my lungs. The pain is like being dosed in gasoline and being BURNED ALIVE.
I need your help. Please help Robert with a donation for treatment, travel and expenses.A donation of any size means a great deal. I would also like it if you could share my website with others.The more people that see it the more people could help. My entire family thanks you for taking the time to help. God Bless.
You can make a donation below using a credit or debit card. All donations are secure using Paypal. (Please note- you do not need a Paypal account to make a donation.)
Me ..a typical day at home.
Reflex Sympathetic Dystrophy Treatment Center and Research Institute
After nearly twenty years of dedicated service to the University of South Florida College of Medicine in Tampa, Anthony F. Kirkpatrick, MD, PhD, left to establish the RSD / CRPS Treatment Center and Research Institute, the world's first institute of its kind, dedicated exclusively to RSD / CRPS.
The Institute opened in February 2008 and is headquartered in Tampa. The Center is approved by the Florida Board of Medicine for Level II surgery.
According to Dr. Robert Schwartzman at Drexel University, “There is a desperate need for a center of excellence for RSD treatment and research."
Dr. Kirkpatrick has devoted his life to the fight against RSD. He has been the recipient of awards from Florida Governors Jeb Bush and Bob Martinez, and from several Deans of the College of Medicine for his accomplishments while at USF. In 2002, the Dean recognized his service and gave him an award for being an "outstanding employee who exemplifies the work ethic and commitment that has helped to make the College of Medicine and the Health Science Center a success”.
In 2001 Dr. Kirkpatrick established The International Research Foundation for RSD / CRPS. He has had the honor of serving as the Chairman of the Foundation’s distinguished Scientific Advisory Committee since its inception. His duties for the Foundation have included conducting clinical research, educating and advising patients who elect to participate in clinical studies, and providing special treatments for RSD / CRPS research subjects.
Some of these treatments, such as conscious sedation with ketamine IV infusions, are critical and not readily available elsewhere in the USA.
Patients who fail to receive this treatment are likely to suffer an acute exacerbation of unbearable pain due to RSD / CRPS. Additionally, there are children who suffer from RSD /CRPS and receive treatments that are only available through Dr. Kirkpatrick.
Dr. Kirkpatrick has also devoted significant efforts to educating physicians worldwide on RSD / CRPS and has led the Foundation’s fund raising efforts.
As part of the RSD / CRPS Treatment Center & Research Institute initiative is the implementation of new ways to measure patient outcomes through objective measurements of pain and physical functioning that have a major impact on quality-of-life. The best way patients and physicians can judge the effectiveness of treatments over time is by documenting objective changes. The Center documents these objective measures before and after treatment with video recordings, photos and through the measurement of pain thresholds. Patients are provided with copies of these recordings. Patients comment in videos that documentation of their outcome on an objective basis facilitates their decision-making throughout their care and that it hastens their rehabilitation.
The Center has launched a web-based system that allows patients to access information about their outcome from treatment at any time. Our web-based system is similar to that under development at the National Institutes of Health in the United States. The increased efficiency, flexibility, and sensitivity offered by a web-based system holds potential to become a widely-accepted, standardized measurement tool for outcome that will improve clinical outcomes and reduced burdens on patients.
What is (RSD)-Reflex Sympathetic Dystrophy ?
RSD describes a condition, a syndrome, which is also known as Complex Regional Pain Syndrome (CRPS). RSD/ CRPS are considered to be perhaps the most painful of all chronic pain disorders. It involves chronic, excruciating, burning pain, pathological changes in bone and skin, excessive sweating, skin discoloration, and extreme sensitivity to touch, among other symptoms.
I never heard of this before...is this real?
1.Upwards of 1.2 million Americans are estimated to have some form of RSD/ CRPS. Approximately 50,000 new cases develop, yearly, it is estimated.
2.RSD is divided into two types. One, called RSD/ CRPS Type I, happens as a result of soft tissue injury, trauma, a fracture, infection, or... where there is no underlying nerve injury. -- RSD/ CRPS Type II refers to cases resulting from major nerve damage. (Type II had previously been known as "causalgia" and dates back to Civil War days.)
3.RSD/ CRPS affects the following: nerves, skin, muscles, blood vessels and bones, simultaneously. -- Motor, sympathetic, DNIC, and the discriminative & effectual pain system.
4.The most common and devastating symptom is excruciating pain which is greatly disproportionate to the injury that caused it. Top pain specialists/ and other experts in the field have stressed that RSD pain is not psychologically-based. It is the result of very real injuries sustained by the individual. These injuries alter some of the genetics. The pain and other symptoms become worse as time goes by, unless it responds to treatment.
5.However, there is no cure, at the present time, for RSD/ CRPS. There are however, cases of remission or adequate control of and lessening of symptoms with treatment. Researchers and doctors have come a long way in the understanding and treatment. And, there are not all that many physicians who have the experience or training to treat RSD/ CRPS.
6.Symptoms often spread from the originally affected area of the body to other parts of the body. Robert has the worst form, known as 'Full-Body RSD'. Please continue to read more about the care that Robert needs from Dr. Robert Schwartzman, a leading physician in RSD/CRPS care and Robert's doctor. "It's very common, and it's always missed," said Robert J. Schwartzman, a professor and chairman of the neurology department at Drexel University College of Medicine in Philadelphia.Schwartzman also sees patients at Hahnemann Univer-sity Hospital in Philadelphia.
Above photo: Dr. Robert Schwartzman and myself. Photo was taken on Dec. 5th 2011 in Philadelphia, PA.
The Thermography is a great tool which can show the RSD as temperature changes...the green color is normal...the blue,yellow and reds shows the Disease (RSD) in my body.
Below are photos showing skin dis-coloration, Dystonia....all caused by RSD. My hands and feet feel ICE cold to the touch, but on the inside it feels like boiling Lava!
My ICU Room at Hahnemann Hospital from April & Nov. 2010, April 2012, Feb. 2013 below
Photos from Infusion Room at Dr. Schwartzman's Office above
Dr. Alemo and I, at the hospital for my Baclofen Pump surgery Feb. 2011
above: photo showing Pic lines (I needed 3) because my veins kept colapsing
The 2nd is showing the 8 inch scar were my Baclofen Pump was (for 4days) it had to be taken out due to infection. I am not able to get another system since my body rejected the first.
These are the 4 RSD squares our family made to be placed on the National RSD Quilt. If you would like to make a square please do so.
This organization provides free flights for medical reasons.