Air Force colonel claims lack of oversight in reserve health care

by David Ham

13NEWS / WVEC.com

Posted on May 13, 2010 at 11:41 AM

Updated Thursday, May 13 at 12:19 PM 

HAMPTON -- An Air Force reservist is pleading to Congress for help.
Col. Doug Strand injured his leg in a motorcycle accident two years ago while reporting for duty at Langley Air Force Base. Now he suffers from Reflex Sympathetic Dystrophy, a painful nerve disorder.

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Freedom from pain

A 24-year-old Christiansburg woman is regaining mobility and making plans to attend graduate school after treatment put her in remission from years of pain.

Anna L. Mallory

Sunday, December 20, 2009

CHRISTIANSBURG -- Brandy Sachs smiles more these days, even after gaining 30 pounds in one year.

For this 24-year-old, weight gain is a blessing and the least of her concerns.

In October 2008, Sachs weighed 76 pounds after she spent seven days in a ketamine-induced coma. She was the 55th patient to undergo the treatment in Germany. She emerged from the procedure with few memories and couldn't perform natural tasks, such as shivering. 

The coma was designed to reboot her nervous system, and, doctors hoped, rid her of the decade-long bouts of pain associated with reflex sympathetic dystrophy, known now as chronic regional pain syndrome. The little-known condition she was diagnosed with at age 13 caused her to cringe in pain with any touch even as slight as a flutter of her brown hair. Walking was difficult, and her right foot had turned inward and would often swell.

Today, after a year's worth of ketamine boosters, doctors say Sachs is in remission. She's been RSD-pain free for a year and won't have to return to Philadelphia for infusions of the drug for another year, unless any changes occur.

While she isn't entirely pain, or medicine, free (she is on strong painkillers as a result of a back surgery that touched nerves, but that pain is not related to the condition), Sachs said a little pain is better than her previous state.

Always cautious, she prefers to say the condition is dormant, but she's pleased with her progress.

"I have RSD, and I'm always going to have it," she said.

She walks on two crutches and has become more active. She started driving on her own, went rock-wall climbing and can make two full laps around Walmart.

Mentally, Sachs said she still feels stuck at 16. Many of her memories -- and skills -- are fuzzy. Doctors said some memories may never return.

The physical progression also has been slow, although Blacksburg therapist James O'Connell said Sachs has made great strides. She's now working on the stationary bike and the treadmill to gain strength and tone her unused legs. He's trying to get her to wear regular shoes, instead of the orthopedic shoe created for her in Germany.

Sachs goes to physical therapy twice weekly. Just last week, she took her first steps in years without bracing herself.

"I'm so proud of her," said her mother, Lisa Sachs. For years, the mother and daughter could barely hug. "It still makes you smile every time you see her stand up," she said.

Around the house, Brandy Sachs still often uses a wheelchair. That's mostly to navigate the crowds of cats, dogs and people who swarm her parents' small Christiansburg home.

"It's just easier," she said. If she bangs any part of her body too much, the RSD could flare, and the pain might return.

In August, Sachs hopes to enroll in graduate school at Virginia Tech to study sociology.

Her parents said that step will be good for their daughter, whose life was overtaken by the condition.

Sachs' story has inspired many. In July, People magazine featured part of her story.

The family said the breadth of knowledge about RSD and CRPS is growing.

"When we first started with it, they knew nothing," Lisa Sachs said.

Brandy Sachs spent seven days

in a ketamine-induced coma and

went through months of ketamine

boosters to ease chronic pain.

Her physical progression has been

slow, but she is strengthening her

legs by riding a stationary bike and

walking on a treadmill.

James O'Connell applies resistance

to Brandy Sachs' foot during a physical

therapy session as her mother,

Lisa Sachs, looks on.

Brandy Sachs, 24, takes unassisted

steps Monday for the first time in years

during a physical therapy session with

James O'Connell in Blacksburg.

Photos by JUSTIN COOK The Roanoke Times Source 

Couple ready to hit road in customized van

By Wayne Laepple
The Daily Item

Published October 05, 2009 11:19 pm -  



Barbara Schaffer and her husband, Paul, arranged for Harvey, their customized van, to have enough room for trips to music festivals around the country.
Liz Rohde / The Daily Item

NORTHUMBERLAND — If you happen to see a large white van parked outside Paul and Barbara Schaffer’s King Street home, you’re looking at Harvey. Harvey is actually a Sprinter van that’s been customized to accommodate Barbara’s wheelchair.

“We named it Harvey after the big white rabbit in the movie,” Barbara said with a chuckle. “Maybe we’ll paint a pink nose and whiskers on it some day.”

Actor James Stewart starred in the 1950 movie, “Harvey,” about a man who befriends an invisible six-foot tall rabbit, or pooka.

The Schaffers never thought they’d ever be interested in a recreational vehicle or a second home, but after a visit to Arches National Park in Utah a couple of years ago, they changed their minds.

“We really wanted to sleep out under the stars,” said Barbara, “but we just couldn’t do that.”

Since 2001, the couple has enjoyed attending half a dozen music festivals every year, and they wanted to be able to join friends who camp at the events and take part in the after-hours jams they’ve only heard about.

“We started thinking about it, but no one builds any that are handicapped-accessible,” Paul said. “What we wanted just didn’t exist.”

Barbara, 60, who suffers from Reflex Sympathetic Dystrophy Syndrome, a debilitating nerve condition, has been using a battery-powered wheelchair for a number of years as her condition has changed. Paul, 63, took early retirement to care for her following her 1987 injury.

They did see a few motor homes that could have been adapted, he said, but they were all very large luxury units, so large that they would have had to tow their Dodge Caravan behind to transport Barbara from the campground to an event. Besides, those units were way outside their price range. Even an Internet search for a used vehicle came up dry, since their particular needs couldn’t be met in a used vehicle without extensive modifications.

“We decided we had to start fresh,” Barbara said.

She decided they should find the right lift unit to get her and her wheelchair into the vehicle. However, they didn’t want a unit that would occupy space inside the vehicle. She finally found a company, Creative Controls, in Madison Heights, Mich., that assured them they could mount their lift beneath whatever vehicle they chose for their motor home.

Next they found a custom builder of motor homes, Sportsmobile, in Huntingdon, Ind.

“They make custom vans, not RVs,” said Paul. “These are the people who, in 1961, modified the first Volkswagen vans into campers.”

The Schaffers found a perfect ally in Sportsmobile. The company provided an online floor plan that allowed the couple to develop a floor plan using the components the needed where they needed them. For example, instead of a right-hand front seat, a power-operated tie-down for Barbara’s wheelchair was specified.

Because Barbara cannot step over the entrance to the bathroom, they changed the layout so the commode is next to the doorway. She can sit on the commode, then lift her legs and pivot into the space. To make that change work, the hot water heater had to be downsized and relocated.

Working closely with the design team at Sportsmobile, it took nearly two months to get the interior layout completed.

“There was a lot of problem-solving by phone.” Barbara said.

They had already settled on the Sprinter, a vehicle designed by Mercedes and sold by Chrysler in this country, but it took some time to locate a 24-footer, the largest one made, and then have the necessary windows installed. The vans are shipped into the U.S. with only the windshield and door windows, so other doors and windows had to be installed after they purchased it.

The truck was purchased in Michigan and delivered to Creative Controls for installation of the wheelchair lift, then taken to Indiana for the rest of the work. The Schaffers went to the Sportsmobile plant to be present as workers installed the bathroom and kitchen modules to be certain the wheelchair would fit where it was supposed to.

“They were wonderful to work with,” Barbara said. “They wanted to be sure everything was right.”

At one point, the locking mechanism to hold her wheelchair would not work correctly, and a technician from Creative Controls came to Indiana to correct the problem. They wound up having to take the vehicle back to the plant to get it right, which held up work at Sportsmobile for a day or so.

The results, the couple agree, have exceeded their expectations.

They demonstrated the lift, which folds out from beneath the vehicle. Barbara backed her wheelchair onto it, and it hoisted her up to floor level. She backed in and turned around near the folding table where they can take meals. Then she moved forward and the electronic lock snapped into place. She pulled on her seat belt and was ready to go.

In the middle of the unit, the compact kitchen, complete with stove, refrigerator, microwave and sink, faces the lavatory, which features a sink, shower and commode. Behind them are two couches that quickly convert to beds.

“We’ve also got air-conditioning and a furnace,” Paul said, as he swung the rear doors wide to reveal a fabric screen across the doorway that will let them indeed sleep outdoors. There’s also a generator for lights, and they will be able to use it to charge the batteries on Barbara’s wheelchair.

“People told us we couldn’t do this,” she said. “We were persistent, and we found the right people to help.”

The couple drove the unit back from Indiana, and Paul said the 5-cylinder, three-liter diesel engine with a five-speed automatic transmission gave them better than 20 miles per gallon.

“A piece of you asks why you’re doing this,” he said, as he contemplated the cost of Harvey. He wouldn’t say exactly how much it cost them. “This cost more than either of the homes we’ve owned, but will let us do something together that we both enjoy.”

 Source 

Celebrating The "Women Of HOPE" - Journey # 6

~~Becca's Story~~

March 12, 2007, I will never forget that day as long as I live!!


I dropped my 4-year-old son off at childcare early in the morning, as I had to go to work. It was a home day care so she was flexible with hours. I told her that her parkway (edge of her yard at the end of her cul-de-sac) was icy and she needed to get it sanded before other kids arrived.
I left and was walking to my car carefully, but not carefully enough. I slipped and fell. Boy did I. I yelled and yelled, but no answer. It was a mess. I had to drive 1 mile to work with my left foot so I could get help because yelling did no good where I fell.


I thought I had a severe sprain since I had done that before. I went to get out of my car, and realized it wasn't just sprained. I sat for about 10 minutes until my co-worker arrived and helped me call my boss to take me to the Emergency Room. After a few hours there, they sent me to my surgeon, a great man who said we were going to fix this!


I had surgery the same day. During the surgery, I went into shock. They thought I was gonna die right on the table. Well, I didn't and when I woke up, my doc told me that he had to put a 5 inch plate with 5 screws that go from the outside of my leg towards the inside and there are also 2 more screws that go from front to back. My fibular head has 2 screws that go from the inside of my ankle up towards my leg. My bones split so I have a piece of Kevlar wrapped around the 2 bones kinda like a rubber band holding the bones in the correct position.



I was non-weight bearing for 10 weeks with an air cast boot. I was finally allowed to walk a little on it in the cast boot for another 5 weeks. I had the boot taken off the end of May 2007. By August, my foot started to have these weird spasms. My physical therapist thought I had RSD, so she sent me back to my surgeon. He sent me to a doctor who does nerve tests. She said I didn't have RSD just a little dystonia, it would go away with time. I went back to PT and fought hard for months to get back to "normal". I was discharged the end of March 2008.


In July of 2008, I went back to the Dr. who said I didn't have RSD because I was having more problems. She then decided I did in fact have RSD. She gave me some meds and sent me on my way. I had been chatting with a member at the YMCA where I worked who has RSD real bad. She gave me the name of a Dr. that she sees, but he wasn't taking new patients. I looked on the internet at a few hospitals near me and found a great Dr. who specializes in pain and has a clinical interest in RSD.


I had 2 nerve blocks, the first lasted 1 day, well almost… the 2nd put me in so much pain that he did a lidocaine IV instead of doing the 3rd nerve block. I played ping pong in his office seeing different docs. I changed neurologists and now Feb 2009, I am struggling to live. I have tried a number of meds, some worked a little, most don't. It's hard because I am on state insurance. They don't like to pay for a lot of meds, so I have to fight to get most of them. Some they still won't pay for. They won't pay for a lot of treatments either. I can't have physical therapy even though all the research says PT is the most beneficial treatment for RSD. I had a shoulder problem in high school and prior to that surgery, my doc (now retired) tried every med available to kill the pain. The only thing that worked was Percocet. I can't have Percocet even though that is one of the every few pain drugs that work for me. I can't take the generic of this med due to an allergy, but Maine doesn't care.


Right now (Feb 2009) I am taking Lyrica, Mirapex (it knocks out a weird side effect I get with Lyrica) and Zoloft (I have Premenstrual Dysphoric Disorder)


I have had to fight for everything since I broke my leg. I can't sue the woman whose house I fell at, because in the great state of Maine, slip and fall cases are difficult at best to win. She had no homeowners insurance (it had lapsed when her husband went out of work) so I couldn't even file a claim with her insurance. Mainecare (Medicaid) pays my medical bills…well some of them.


My RSD has officially spread to my left leg so both legs are affected from my hips down. It is getting harder and harder to walk, but I am not letting RSD get me. I have HOPE that someday there will be a cure.

Thank you for listening to my story.


~~Becca~~

Pain, Gates & Brain, Oh My!

As silly as this may sound, you have "Gates" in your brain. I know, I was just as surprised when I first learned about them. That's why I am so anxious to share this insightful information with you.

If you are anything like me in your suffering with Chronic Pain, you most likely 'feel' your pain more intensely during the night hours. When you are trying to go to sleep, you're trying to get completely relaxed, then all of a sudden, boom, you really start 'feeling' the pain stronger and in more areas, Yes?

The reason for that is because of the number of competing messages arriving at the "gate" is usually far less at night than it is during the day. Because of no competition many more of those pain messages get through. So what are we to do? Simple really, you have to do something that will excite the nerve center directly, something like acupressure! Acupressure is a lot like Acupuncture with the exception of the needles. Which works better for me, how about you?

The first and most difficult lesson to really grasp is that pain is natural! Don't raise your eyebrows at that statement, read on! It is the response of the body to both external (exogenous) and internal (endogenous) events, signaling us about danger or to take caution, and providing us with a survival mechanism that allows us to respond to an injury, be it a new injury or an old one.

One way to understand the mechanism of pain is to view pain as messages descending from the your brain or ascending to the extremities of your body through this massive highway of nerve fibers. Can you picture it? These nerves meet up at a "GATE" (actually a series of gates) where your spinal cord joins with your brain. Sort of like a 'bottleneck' in rush hour traffic, 'pain' messages crowd in with other messages it has gathered from your body along the journey down that massive highway. Then it sits and waits for a chance to get through, sort of like that person who sits through a green light but is more than willing to go right through the red lights. So what happens is some messages are received and others don't get through at all.

See, every experience you have in life is remembered by your brain. And that experience is attached to the emotion or feelings you had at the time of that experience. (e.g. fear, pleasure, pain, depression, loneliness, worthlessness, etc.).

So when you are confronted with a new situation, your mind attempts to make sense of it by scanning the deep recesses of every corner for similar experiences. Once it finds that experience, it also brings up the attached feelings that goes along with it.

If the attached feeling is uncomfortable or painful, your mind then looks for a way to get rid of the pain. It comes to a quick conclusion about what you should think or how you should act, then it does something really damaging for you, it 'justifies' that conclusion by pulling in evidence to support it.

Then you make a move that is based almost entirely on OLD experiences or things you had previously learned! What is so surprising is ALL of this happens in an instant, BEFORE the logical or rational part of your brain ever has a chance to "think it through".

So learning acupressure is something to be looked at as a NEW experience that can override everything, allowing you to control the opening and closing of your "gates". Wow, that possibility would allow you to be able to get into bed, lay back, get comfortable, and truly enjoy a good nights sleep. Is acupressure the answer for everybody? Probably not, but how do you know if it will work for you if you don't give it a try?

There are several options you have at your fingertips; acupressure, tapping, meditation, exercise, etc., but remember; if one doesn't work for you that doesn't mean another won't, so try and try again. I would also recommend you have someone who is familiar with your choice to help walk you through how it should be done to get the benefits to the fullest.

The secret of a better and more full-filled life is to cast out those old, dead, unhealthy thoughts. Opening those "gates" for the new, vital, nourishing, wholesome, faith based thoughts to come flying in. An intake of new thoughts will remake you and your life!

Local man dies after suffering 'devastating' disease

written by: Adam Chodak posted by: Jen Marnowski 1 day ago

THORNTON, CO. - In March of 2007, Nick Hoch broke his toe. The accident triggered a nightmare of a disease defined primarily by unrelenting pain.

Hoch, 37, had been working for Budweiser, loading and unloading beer throughout the Denver area.

While on the job, he dropped a keg on his foot. Doctors removed two bones from one of his toes and replaced them with pins.

Hoch, a Thornton resident and father of three, should have bounced back quickly. He didn't.

"It got progressively worse," his father, Tom, said.

Tom watched as the pain not only intensified, but moved beyond his foot and into his legs.

"You touched him, he was in brutal agony," he remembered.

Hoch had what's called Complex Regional Pain Syndrome (CRPS). Doctors once referred to it as Reflex Sympathetic Dystrophy (RSD).

This is the same disease Leslie Fishbein - the Denver furniture magnate who died earlier this year - had.

"It's devastating and it can become all-consuming for patients," said pain specialist Dr. Mike McCeney. "It basically takes over their lives."

McCeney, who works in northern Colorado, said CRPS is usually the result of a relatively minor injury like a broken bone.

He said the nervous system, for some reason, goes haywire causing "pain that's actually way out of proportion to the actual injury that has occurred."

The pain can be managed, but there's no cure for CRPS.

McCeney said not many know about the disease, including those in the medical community.

"There's some doctors out there that don't know about the entity and unfortunately (some patients) don't get treatment going soon enough, which can be a problem," he said.

Hoch struggled with the pain for nearly two years. This week, Hoch went into the hospital to undergo a procedure that could have tempered the pain.

Early Wednesday morning, just hours before the scheduled surgery, Tom Hoch got a call.

"That was it," he said. "I mean 37 years old and he's gone."

Hoch still doesn't know what exactly killed his son, but he does know he'll continue to get the word out about this horrible disease.

"You wouldn't wish this on your worst enemy," he said.

(Copyright KUSA*TV, All Rights Reserved) Source

Please watch this video from the News:

Reflex Sympathetic Dystrophy Syndrome Association-RSD Coach™

I am raising funds for research and development of a possible cure to end the life shattering pain one goes through with this syndrome. If you were living with this extremely painful syndrome, wouldn't you want someone to raise funds to help you not hurt every second of every minute of every hour of every day?? Of course you would! So won't you please give to help someone else can feel better!

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See my FirstGiving Widget on SideBar for quick Donating or Click the Title of this Post!
Thank You & God Bless! We ALL appreciate your contribution in helping us FEEL better!!

Jacksonville Woman Develops RSD after Dog Bite

Posted On:
December 30, 2008 by Thomas & Lawrence



A Jacksonville woman developed reflex sympathetic dystrophy (RSD) after being attacked by a dog on her own property. The dog bit deeply in her arm, but the wound itself was not severe enough to require stitches. After being initially seen by doctors she was sent home.

Within days she developed a serious infection of the wound site. The infection was followed by the onset of severe burning pain, color changes, a cooler temperature in the arm, and abnormal hair growth on the arm. Unfortunately, all of these are classic symptoms of RSD.

RSD, previously known as Complex Regional Pain Syndrome, is a serious, usually permanent neurological condition that is usually caused by an injury to an extremity.

This situation highlights the very serious nature of dog attacks. Every year, we hear of people seriously injured or killed by pet dogs in Jacksonville. Children are the most frequent victims of dog attacks, accounting for 70% of dog attack injuries. In the United States, there are almost 600,000 dog bite wounds that require medical care each year.




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