MATTHEW
Still Needs You
To Help Him With
Treatments & Related Expenses.
Will You Please Donate
To Matt's Medical Fund?
Please Click Here
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MY LIFE
SHORTLY AFTER
RSD BEGAN
(Unfortunately, as my RSD has progressed, I now rarely leave my home.
During the last few years, I have preferred not to have my photo taken.
The photos below show some of the times in my early RSD when I tried so hard to remain a part of my previous life, no matter how much pain that I had to endure.)
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IF YOU KNOW OF A LOCAL BUSINESS OR COMMUNITY ORGANIZATION THAT YOU BELIEVE WOULD WANT TO HELP RAISE FUNDS FOR MATT, PLEASE LET NANCY KNOW.
Thank you for your support!
'It will take a village' to help
Matt regain his life.
Won't you please help him?
Nancy Irving can be reached
at:
nancy@setmattfreeofrsd.com
Please spread the word of Matt's needs and this website to your friends, relatives, co-workers, and those in your email address books.
A very special and heartfelt 'Thank You'
to Paul Mueller and the News Team at WLNE TV 6
and to
Janet and Joe of the VALLEY BREEZE
for ongoing coverage of Matt's situation and efforts to get him to Germany and his life back!
Mayor Charles A. Lombardi of North Providence has been what any citizen could hope for in their leader. He has been an incredible source of emotional support. Plus, Mayor Lombardi has helped to rally the town's spirit around Matthew! All of which has resulted in prayers and financial support for Matt's journey to Germany. (See Matt's Germany Blog.) - We cannot thank you, enough, Mayor Lombardi!
The June 21st car wash raised an amazing $5,350 thanks to the CAPS Alumni, Jim Curtis, Sue Bennett, and some incredible students of North Providence High School. - Thank You!
Thanks to the North Providence Pool & Fitness Swim-a-thon for their hard work and donation!
An incredible job was done by the N.P. High teachers and Honors Students, at the Pasta Fundraiser! - What a team! What spirit! What compassion!
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MATTHEW'S STORY
I was 16 years old, in 2003, and was an honor student at North Providence High School, taking college level classes, in the hopes of pursuing my lifelong dream of becoming a veterinarian. -- I had spent approximately 7 years mastering Tae Kwon Do and was working on my black belt. Under the guidance of my phenomenal instructor, Jery Potenza, we learned that the strongest part of our body
was our mind, that our mind controls our actions, and the art of
self-discipline.
In Tae Kwon Do, we also learned to maximize our determination and believe that we will achieve our goals. -- I was involved in my high school's Science Olympiad, Academic Decathalon, and other school activities. -- I was an altar server, weekly, for 8 years, and felt that it was a great privilege to serve God. -- I bred lovebirds for years. I handfed the babies. It was an incredible feeling to nurture and strengthen so fragile of one of God's creations. -- I enjoyed going to movies,
playing pool with my brother, reading for pleasure, stimulating my mind with chess, and bowling. Just being an active teenager. -- Swimming was both fun and an incredible way to relax, by myself, or with others. My love for water led me to pursue a certified lifeguard position. (Which was abruptly stopped due to the RSD.) -- Spending time with my immediate family and relatives was a common occurance and something which brought
me great joy.
Then, it happened. It was July 2003, and I was 16 years old. Immediately after what should have been a successful surgery, I knew that something was very wrong with my foot. Yet, it was not until months later, in October 2003, when it was recognized by the doctor to be RSD/ CRPS Type II. - Neither
I nor family and friends had heard of it
before. My first questions for the doctors were how long does this condition last and what do I need to do for it to go away.
I learned that it is a chronic and often debilitating pain syndrome that can affect your whole body. There is no cure. Simply various treatments.
So, my parents tried to find doctors who specialized in this illness, which was not an easy task. - The past 5 years, have been an unimaginable uphill battle. Filled with intense and extremely painful physical therapy, a wide-range of medications, procedures which included many nerve blocks, infusions, cryoneurolysis, and a spinal cord stimulator. Yet, only a few of them even provided me with a very brief period of extremely mild relief and often exacerbated my RSD
pain while bringing on board other symptoms. I was willing to put myself through these often excruciatingly painful procedures in the hopes that at least one of them would be the key to providing me with relief and even remission of this monster that had so greatly devastated my life. In 2006, I was diagnosed by Dr. R. Schwartzman as having Full-Body RSD/ CRPS, Type II.
My life has been turned upside down and inside-out.
This is some of what I endure, daily, due to RSD/ CRPS.
**
The pain in my feet, hands, forearms, spine, and head is relentless and excruciating. ** I endure extremely sharp, fast jolts which race up from the base of my spine to my
neck, frequently. They also take my breath away.
**
There are severe episodes of what feels like a wild ball of sharp,
shooting, jolts of pain.
** I experience pins and needles episodes from the waist up. The ones in my face, neck, and
head are extremely intense and almost
unbearable. These are brought on every time that I eat or drink.
**
There are severe, throbbing headaches, daily, which require me to take medication and
return to bed. Yet, the medication only occasionally takes off 'the edge' of the
headache pain.
**
My memory is poor and I struggle to concentrate and focus.
**
When I am at rest, the pain
is at a level #8; my full-body RSD pain has increased, as well.
**
The pain is intolerable when standing, and my right foot buckles out from
me in a very short time.
**
I remain in a wheelchair, recliner, and bed, most of the day.
**
I have difficulty swallowing all of the time. It impacts my eating. I choke
on many foods
and some large medications.
**
I experience episodes of a loss of my voice, multiple times per day.
** Through much of the day, I experience 'zig-zgs' and 'flashes' before my eyes.
**
My hands become excruciatingly painful when I need to write, shave, or
try to lift any ‘non-heavy’ items such as
books. The vibrations of an electric shaver have become too much
for me to tolerate.
**
My joints have become even more stiff and painful, than ever.
**
Full body sweats are very uncomfortable and embarrassing.
**
Shortness of breath episodes, simply add to what I endure, daily.
**
My hands and feet are unable to tolerate the cold, and they turn a purple color
for 'no reason at all'.
** Loud noises cause great pain to my ears.
**
Sleep is terrible, sporadic, brief, and non-refreshing. Even when I take sleeping
medications, it takes 3-4 hours to
fall asleep due to the pain, other symptoms, and primarily ‘feeling
awake’. When I do sleep, it is often in brief naps, and I find it
difficult to return to sleep.
**
There is a great pressure in my lower spine, which makes sitting extremely painful, for
extended periods.
**
With any new pain to my body, the RSD-type pain goes to that site.
Just getting through, each day, has become an increasingly difficult struggle, for me, despite doing my best to maintain a positive attitude.
Imagine, if you will, watching your body 'betray' you in so many ways, while putting you through the most excruciating pain imaginable and 'piece-by-piece' taking away the ability to live as you always had and hoped to live.
There
are numerous other areas affected by the RSD, but hopefully, you have
a sense of what I endure. And why it is so imperative that I am able
to get to Germany for the 'Ketamine Coma' procedure which has helped
so many others who suffered as I do. And who have also tried what is available here, without success.
Dr. Robert Schwartzman and others believe that this treatment is what I desperately need if I am to ever regain any of my life, as I have exhausted treatment options which are available here in the U.S..
Click here for more of MY STORY
THIS WEBSITE WAS 1st ONLINE ON 5/11/08.
"We are forever grateful for both your spiritual and financial support that enabled Matthew to get to Germany."
With The Deepest Level Of Gratitude,
Matthew, Nancy, Russ, and Daniel
Online donations to help Matthew are deeply appreciated, as are the ones
which are mailed.
Buy a Tim Janis DVD or CD or an acrylic painting,
and help Matt's Fund!
A Heartfelt THANK YOU to both Kathy Lisi of North Providence High School and Frank O'Donnell, a great talent for their successful Comedy Night Fundraiser.
Huge THANKS go to the owner of the Oaks Tavern, David Mastraccio, and Many, Many Thanks go to Jane Palmer, Bethany Brouillette (Jane's daughter), Bill Cummings, and others who made the Labor Day Weekend fundraiser a success.
Check out the To Donate/ Offer Support page's
Other Ways To Donate page.
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MATT'S PARENTS' MESSAGE
As parents, we would trade places with
Matthew and his RSD, in a heartbeat, if we could.
Matthew truly suffers a constant, 'silent road of hell'.
As parents, our hearts die a little
more, daily, as we watch Matthew bravely struggle with the non-stop, excruciating pain and other devastating symptoms of his RSD.
To watch your son suffer relentlessly such horrific pain and other devastating problems... Plus endure some of the most painful procedures that one could imagine in the hopes of any relief, only to receive none... And continue to watch him bravely battle this RSD monster...
While Matthew's faith remains strong, his RSD has greatly progressed and his health has greatly deteriorated. He is no longer able to battle the RSD as he once did.
We cannot find the words to express which would adequately help you to realize how this tears us apart.
As parents, we are embarrassed to say
that we have gone through our resources, in order to try to pay
for treatments, appointments, and expenses which our insurance does
not cover. Even then, there are still outstanding medical-related bills. -- And, we lack the means to give Matt the treatment in Germany that he so desperately needs and which top doctors have said offers Matt his only chance at regaining his life.
As parents, we ask, with all humility, for your prayers and for your financial support to help this fine
young man regain his life.
What can we give you in return, other
than prayers of thanks and undying gratitude? Only updates, if you
wish, on Matthew's progress and a promise that if Matthew can go into remission from his RSD, that he will continue
on with a life full of promise, faith, and commitment to others.
IF YOU BELONG TO AN ONLINE FORUM or ONLINE SOCIAL/ BUSINESS NETWORK or KNOW OF ANY WEBSITES THAT WE
SHOULD BE EXCHANGING LINKS WITH, PLEASE LET RUSS KNOW:
If you know of anyone who might wish to make a donation to Matt's Fund, please forward our website address to them.
What is Reflex Sympathetic Dystrophy (RSD)/
CRPS Complex Regional Pain Syndrome?
RSD describes a
condition, a syndrome, that is also known as Complex Regional Pain Syndrome
(CRPS). RSD/ CRPS is 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.
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.
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.)
RSD/ CRPS affects the
following: nerves, skin, muscles, blood vessels and bones,
simultaneously. -- Motor, sympathetic, DNIC, and the discriminative & affectual pain system.
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.
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.
Symptoms often spread from
the originally affected area of the body to other parts of the body.
(Matthew has the worst form, known as 'Full-Body RSD'.)
Symptoms include (but are
not limited to):
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intense 'burning' pain, which can be felt, 24 hours a day, 7 days a week
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Skin color changes (often purple-dark red)
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Extreme sensitivity to
touch, including that of clothing
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Difficulty tolerating
water temperatures
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Nail and hair problems
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Skin becomes shiny and
thin
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Difficulty swallowing
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Severe, debilitating
headaches
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Body sweats
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Body spasms
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Sensation of painful
'pins and needles'
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Problems with basic
motor skills (hands, walking... )
Treatments include
medications, nerve blocks, implanted medication pumps, implanted
nerve simulators, physical therapy, and more. Everyone responds differently to these treatments.
But, remember, that there
is no cure. And if it is not treated aggressively during the first 3 months, it can be extremely difficult to treat.
Everyone with RSD/ CRPS is unique. What helps one person might not help another. It is a condition which doctors are still learning more about. Yet, the immediate needs for treatment and relief must be tackled, in the here and now.
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