Sunday, September 1, 2013

How to Conquer the World With One Hand...

Read an excerpt from

How to Conquer the World With One Hand...
And an Attitude

If you wish to read the whole book, it is available here:


The link above will take you to the Amazon site where you can get the book for the best price in paperback, Kindle and audio CD format.


Prologue and Chapter One
by Paul Berger & Stephanie Mensh

Prologue


I was 36 and had everything I wanted: a rewarding career, a happy marriage and a promising future. My investments were doing well, and I’d just bought a new car. I owned a house and was saving for a bigger one. I was in control of my life and, if I took a rare moment to think about it, I felt like a conqueror.

I was a type-A personality, which I knew could be bad for my health. My father already had suffered two heart attacks, and I didn’t want to follow in his footsteps. So I watched my weight, was careful about what I ate and worked out at the gym three or four times a week. I was in great shape and felt energetic and powerful.

My story begins on December 30, 1985. In just two days, it would be the New Year, and I was eagerly anticipating a major change in my career.

At that time, I was working for the Washington, D.C., city government. I had a master’s degree in Urban Affairs and Policy Analysis and had a position in the city’s real estate development department. My job was to facilitate the construction of downtown projects, making it easier for buildings to get built and open their doors to the public. I had chosen to work for the government because I wanted to help build a better world. I liked driving around town and seeing the results of my work. Lately, however, I had become frustrated with the city bureaucracy and had decided to look for a new job.

By going to school at night, I had recently earned an MBA in Finance from a college in Arlington, Virginia, where my wife, Stephanie, and I lived. With this added credential, I was looking at jobs in either finance or real estate.

I’d had several promising interviews and had just been asked by one company to return for a follow-up meeting after New Year’s.

So, on December 30th, when Stephanie dropped me off at the gym and went shopping for a dress to wear on New Year’s Eve, I knew my life was about to change. What I didn’t know was that it would change as dramatically as it did....

Part 1: Surviving the Crisis
The Explosion in My Head

I’d finished jogging around the track and had just started lifting weights when, all of a sudden, I got a terrible headache. I went over to the gym attendant and asked for an aspirin.

"Sorry," she said. "We’re not allowed to give out anything, not even aspirin. What’s wrong?"

"I have the worst headache." The pain already was so bad that I was starting to see double.

"I can call an ambulance for you," she offered, "but that’s all I can do."

Why not call an ambulance? I thought. If it turns out to be nothing, I’ll be a little embarrassed; but this feels really bad, and I should check it out. "Okay," I decided, "call an ambulance."

I started toward the locker room to change out of my jogging shorts. But pain and dizziness overwhelmed me, and I barely staggered to a table and chair a few feet away. I landed in the chair, then lay my head on the table. I don’t know how long I sat slumped like that; my sense of time was becoming distorted.

"Sir, how are you?" the paramedic asked.

"I don’t feel so good." I told him about my headache.

"Okay, let me help you onto the gurney."

"Can you take me to -- Hospital?" I wanted to go there because it was affiliated with my HMO and had a very good reputation. But it was located across the Potomac River, in Washington, D.C.

"No. We have to take you to the nearest hospital." This turned out to be a small, community hospital.

Later I wondered if my story might have unfolded differently, had I been taken directly to the hospital I’d requested.

The paramedic wrapped a blanket around me and wheeled me out. It seemed like miles before we reached the ambulance and even longer before we arrived at the hospital. By the time I got to the emergency room, I thought my head was going to explode.

Suddenly I remembered that Stephanie would be on her way to the gym to pick me up. The paramedic called the gym and found her already there.

"Hello, Mrs. Berger? I’m here with Paul, in the emergency room. He wants you to go into his locker and bring his clothes, wallet and coat. He left everything behind when we brought him here."

Then he turned to me and said, "She wants to know the combination to your lock."

I rattled off the numbers, and he repeated them into the phone.

"She says she’ll be here in a few minutes."

The emergency room was quiet that evening. I lay on a bed in a dark, curtained-off area, waiting for Stephanie to arrive with my things. The pain in my skull was so intense that I had no idea how much time had passed before she finally appeared. She told me it was ten p.m. and explained that I’d given her the wrong combination to my locker. The staff at the gym had to break the lock so she could get my things.

At that point, the neurosurgeon on call showed up.

"Can you describe what happened?" he asked.

Gritting my teeth from the pain, I told him everything I remembered.

"Do you suffer from migraines?"

"No."

"Are you having double vision?"

"Yes."

The neurosurgeon raised an eyebrow.

"Do you know what day it is?"

I think I answered correctly.

"I’m going to order a CT scan," he said. "Someone will be down in a few minutes to take you there, Mr. Berger."

By the time the CT scan results were available, it was near midnight. The neurosurgeon admitted me to the intensive care unit and ordered painkillers and other medication.

He told me that a blood vessel in my brain had ruptured, and blood was flooding my brain, causing the pain. He said that this was very serious; in fifty percent of the cases, the person dies. He said that I was lucky I had come to the hospital right away, and that he thought I would be okay.

He asked me how old I was. Stephanie answered, "Thirty-six."

"Me, too," he said. "But for the grace of God, this could be me," he told us. "This can happen to anyone, at any age."

Luckily for us, Stephanie worked for a national association representing surgeons. The next morning, before returning to the hospital, she called her boss, Matty, to ask for her help. Matty had many high-level connections within the medical community. Stephanie asked her to check the neurosurgeon’s credentials and find out more about my diagnosis, a "subarachnoid ruptured aneurysm on the carotid artery."

When Stephanie arrived at the hospital, I was still in a great deal of pain. My area of the ICU was darkened. Bright lights, loud noises or other intense stimulation could cause further bleeding, the neurosurgeon had said.

"How do you feel?" Stephanie asked.

"Okay," I answered automatically. "No. Not okay. My head still hurts."

I stared into the dark room for a few minutes. Stephanie said nothing, trying to take in all of the monitoring equipment hooked up to me. I breathed heavily, to fight back the pain.

"You have to get my health insurance card. You have my wallet. And call them. It’s an HMO. You have to call them and tell them I’m here. They have to know for the insurance coverage."

Then the neurosurgeon came into the room.

"I have some papers for you to sign. You must have an angiogram so we can locate the aneurysm. When we locate it, we will be able to operate right away. It is a radiological test. We inject dye into your leg, then trace the blood flow with x-rays through the vessels up in the neck and head.

"I’ll probably transfer you to a university hospital for the surgery. They will know better how to care for you there for this situation. The literature shows that operating within seventy-two hours for patients like you, Mr. Berger, have the very best outcome."

He gave me a clipboard with the informed consent release papers for the test.

The very best outcome...Seventy-two hours... The words echoed in my mind. I was sure I would have the best outcome; I always did well on tests. I figured everything would be back to normal in a few days, and I’d forget the whole incident like a bad dream.

About an hour later, I was taken to the radiology department for the angiogram, and Stephanie headed for the telephone. She called Matty, who reported that the neurosurgeon was good. But she added that everyone had told her I should be moved immediately to a university hospital. She gave Stephanie the names of the top neurosurgeons at the university hospitals in the Washington, D.C., area, including the one that was partnered with my HMO. Stephanie had already called my primary care physician, Dr. Lanman, and this waswhere he was having me transferred.

Matty also said that the experts advised that the angiogram be performed by a radiologist who specialized in neurologic imaging. I was undergoing the test with a general radiologist. Not a good omen.

Stephanie then called the neurosurgeon recommended by Matty’s contacts, Dr. King, at the hospital to which I was being transferred. She asked him to take my case, and he readily agreed.

Next, she canceled our New Year’s Eve plans. Our friends Jerry and Marie were supposed to come down from my hometown of Philadelphia to be with us. We’d also had tickets to fly to St. Martin the next weekend; perhaps Jerry and Marie would go on our trip instead.

Finally, Stephanie called my office and tried to explain what was happening. She said that the call wasn’t easy for her. We had many more questions than answers to convey at that point.

Stephanie and I spent New Year’s Eve in the ICU. The staff was kind enough to let her stay as long as she wished.

When I was single and didn’t have a date or a party on New Year’s Eve, I felt like the world was going to end. This time, although I had my wife at my side, my world as I knew it had ended.

The next morning, after Stephanie had returned to the hospital, the neurosurgeon came by on his rounds.

"I examined the angiogram," he said sadly. "I know exactly where the aneurysm should be, but I cannot find it on the film. It is possible that the bleeding is obscuring the aneurysm," he huffed.

"If I could see where it was, I would operate immediately. In Europe, they would let me operate and find the aneurysm during surgery. But in the United States, they do not allow it; the threat of malpractice. Even though I know where it should be, and you should have this surgery as soon as possible."

This was a terrible blow. Matty’s warning that a specialist should perform the angiogram echoed loudly in my mind.

"Is it the quality of the angiogram? It wasn’t done well by the general radiologist, was it?" Stephanie asked, trying to stay calm.

"I don’t know," he replied. "There is too much blood to see where an aneurysm might be."

"I’ve talked to Paul’s HMO," Stephanie said. "They’re transferring him to the university hospital this morning."

"That’s okay," he said graciously. "I will be happy to provide them consultation on Mr. Berger’s case."

When the ambulance driver came, Stephanie told him no sirens; a slow, quiet, easy ride. She would follow in her car. My head still hurt, and I was glad to be leaving. I was sure that Dr. Lanman and Dr. King would get moving on my case, solve the pain, and get me back on my feet.

Soon after I was admitted to the university hospital’s neurosurgery floor, Dr. Lanman came to see me. He became our go-between with the other health care professionals and served as our "translator." He explained all the neurosurgery terms and described what we should expect. He was my age, energetic and concerned for me. I often have thought that I received a little extra effort because I was the same age as most of the doctors and nurses. Were they also thinking that "there but for the grace of God go I?"

For the next few days, I stayed in bed. The hospital room was dark, and I wasn’t allowed a TV. The doctors wanted to limit any stimulation that might cause additional bleeding in my brain. I had no appetite, had trouble urinating and continued to suffer a constant, throbbing pain in my skull, despite the medication and isolation. I could still read, write and talk, but most of the time I said little.

Day and night, Stephanie sat near me in the dark room, watching me; watching my blood pressure monitor registering near 200 over 150 (normal is 120 over 80), my heartbeat slightly arrhythmic. I could see that she was overwhelmed with concern. But neither of us realized how close to death I was. We were just too young to understand the meaning of death—or life.

"Paul, I have to call your parents. What should I say?" Stephanie asked later that week.

"Tell them I’m okay. Tell them not to come. They should enjoy their vacation in Florida. It’s too cold and icy here. Besides, it might be too much stress for Dad."

Stephanie called. "I want to talk to him," my mother insisted.

"They’re not allowing a phone in his room just yet," Stephanie said, not telling my mother that the loud ringing could trigger more bleeding.

"Stephanie, anytime anything is involved with the brain, it is really serious," Mom said. "Should we come to Washington?"

"No. Let’s see how these tests go for the next few days. Paul just doesn’t feel he’s sick enough."

Stephanie promised to call every day with an update on my progress. But mothers always have ways to find out about their children. That evening, when Stephanie returned home, the phone was ringing. It was Jonathan, my high school friend, a doctor. His parents are good friends of my parents. My mother had called him in Philadelphia and urged him to contact Stephanie.

Stephanie repeated all the medical terms, tests and information she had gathered in the past few days. "They just can’t seem to find the aneurysm. And Dr. King now isn’t even sure it is an aneurysm. He said he can’t see anything on the angiogram; there’s too much blood. Please don’t say anything about this to Paul’s parents. We don’t want them to worry."

"Well, if it is an aneurysm," Jonathan said, "the conventional wisdom is that whatever functions the person has right after the bleeding is where he’ll be, or less. For example, if Paul could not talk or write now," he said, "there would be little hope that he would regain that after the surgery to close the aneurysm. Did they say anything about that?"

"I don’t think so, and Paul is talking and reading and writing. He can still walk, although they aren’t letting him out of bed."

"Well, that sounds positive. Call me if you need anything."

The next day, Dr. Lanman told us about some new equipment that had been delivered to my room. The bleeding in my brain had caused swelling and pressure. Sometimes, to alleviate the pressure, the neurosurgeons drill little holes in the skull. The equipment was there if they needed to do so.

This was a blow.

"I thought Paul was getting better," Stephanie said weakly.

"Well, let’s hope they don’t need to use it," he said, trying to be comforting.

Stephanie made some notes in a little pocket notebook. There was so much information and new terminology that keeping notes had become her only way to cope. Every few hours, in my dark room, she squinted to write down my blood pressure readings, medications and comments from the nurses or doctors. She had started to collect important phone numbers, too, including Dr. Lanman’s direct line, which she later used more than once.

Finally, a full week had passed since my headache had started. The pain had dulled somewhat, either from the medication, reduced swelling or just having lived with it for so long.

Dr. King ordered a second angiogram. He explained that, because my condition appeared to have stabilized, enough blood should have cleared to see where the bleeding had originated and to make a decision on the next step in treatment.

This time, the test was performed by a neuroradiologist, a specialist in interpreting images of the brain. After a few minutes, he located the aneurysm. He grumbled, then said, "Dr. King will take a look at this and discuss your options." I didn’t want to know any more.

When I returned to my room, Stephanie was waiting. I told her what the neuroradiologist had said, but I didn’t feel like talking about it. I knew that Stephanie wanted me to have surgery. She wanted the doctors to perform their medical miracles and make me completely well again. I didn’t feel the same way. I didn’t want surgery; I didn’t feel that sick. And deep inside, I was too scared to breathe.

I knew things were bad when Dr. King sat down at my bedside to talk to me about the angiogram. "Now that we know where it is, I can see the aneurysm on the first film," he said. "We have to operate."

"What other choices do I have?"

"If we don’t operate, you could die from the bleeding."

"Can I die from the surgery?"

"You can die from the roof of the grocery store falling on your head. In this institution, under my care, no one dies from this operation."

"I just don’t know."

"How soon would you schedule the operation?" Stephanie asked. "His family wants to come in to be with us for this."

"Well...today’s Thursday.... Paul is stable, getting a little better.... We could schedule it for Monday." Then he stressed, "Paul, you have to have this surgery."

"Tell me a little more about what you do," I said, trying to concentrate. My mind was a blur, grogged out from the medication and now this heart-stopping news.

"This is not a difficult operation. It’s our bread-and-butter procedure," he explained, trying to soften his clipped manner. "An aneurysm is a bump on your carotid artery. Yours is about the size of a large marble, and it’s well-defined. It’s something you’ve probably had since birth, and it could have burst at any time; last week, or fifty years from now picking up a bag of groceries, or any sudden physical exertion, like lifting weights. We open the skull, reach down and put a platinum fastener over the aneurysm. If nothing goes wrong, you should be able to leave the hospital in a week or so, then recover at home forabout a month or two."

"What do you think?" I asked Stephanie, stalling for time, trying to clear my thoughts so I could reason this out.

"I think you should have the surgery. I don’t see that there is any choice. If Dr. King doesn’t operate, the aneurysm can continue to bleed and...."

"Okay." I felt beaten down and frustrated by this total loss of control over my life. This feeling would soon become an unwelcome constant.

According to Stephanie’s notes, Dr. King also told her I could have a stroke, become paralyzed, lose my speech, not work again. But she didn’t really hear or believe him. She simply assumed I would do well and that our lives soon would return to normal.

Stephanie didn’t get back to the hospital until late the following day. I missed her. I was bored in the dark, with no TV, no light to read by, no concentration to think.

After going to her office to thank Matty for her support, Stephanie had gone to a medical library to read everything she could find and understand about aneurysms, making copious entries in her pocket notebook and adding to her list of questions for the doctors. Among other things, she learned that the platinum clip implanted in my brain to seal the aneurysm wouldn’t set off a metal detector or be disturbed by cabin pressure on an airplane. This was good news, because we traveled to Europe at least once a year, and she was sure we’d be traveling again in the near future.

Meanwhile, my blood pressure continued to rise. To lower it, I was transferred to the ICU for intravenous medication.

As news of my impending surgery spread, I was visited by a parade of family, friends and coworkers. Even the head of my department, about five levels above me in the bureaucratic hierarchy, came to see me. This was so unexpected that I got scared.

"Why are they doing this? Am I really this sick?" I was angry and confused. Stephanie didn’t know what to say.

My parents flew in from Florida, and my brother, Stanley, caught a flight from San Francisco, where he was living. They planned to stay just a few days, based on Stephanie’s upbeat assessment of my condition. They eventually stayed nearly two weeks, waiting until they were sure I would survive.

I didn’t like being the object of all this attention. I was tormented by the unrelenting painin my head, fearful of the upcoming surgery and frustrated by not being allowed out of bed. I reacted by being defiant. Late that night, on the eve of my surgery, I begged my nurse to help me get out of bed.

I wanted to sit on the commode, I said. Once in the bathroom, I sat there, trying to remember what to do. Suddenly, my head exploded again.

I tried to call for the nurse, but I don’t know if any words came out. I don’t know how much time passed, only that I was back in hell.

The next thing I knew, I was undergoing another CT scan. My aneurysm had opened again, flooding my brain with a fresh tide of blood.

As I was being wheeled back to the ICU, I saw Stephanie and Stanley. It was morning, and they had come to wish me good luck. Despite the sudden, new bleeding, Dr. King had decided to operate.

My last words to them, pushed out through unbearable pain, were: "Let’s get this over with!" Looking back, I wish I’d said something more memorable, because it would be a very long time before I would speak again.

Sunday, August 25, 2013

A brain injury caregiver who shared her free time with me


More from Monica Vest Wheeler. She has given me permission to reproduce it here on this blog. Monica's blog is titled "Turning empathy into action" and can be reached using this link:  http://monicavestwheeler.blogspot.com/  


She mostly writes about many different types of brain injuries and diseases, such as Alzheimer's, and occasionally writes one about stroke. She has published numerous books. According to her blog heading, Monica "...explores how we can lift ourselves and others by turning empathy into action … and the importance of the art of compassion in dealing with Alzheimer's, stroke, brain injuries and other life challenges." Monica is best known for her work on the Help ME Cope & Survive book series: http://www.monicavestwheeler.com/

Monica is also a very active volunteer for Retreat & Refresh Stroke Camp and arguably our best camp photographer. 

I hope you enjoy her writing and visit her blog. And be sure to browse her archived articles, too.
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by Monica Vest Wheeler

I am deeply humbled that a full-time caregiver gave ME an hour and half of her precious free time Friday to talk about three of the greatest joys of her life: her son, caregiving and educating the world about brain injuries.

As I listened to the succinct, insightful and emotional words of Jenny Carter of Dallas, Texas, I was immediately captivated by her honesty to literally tell it like it is when it comes to the five years she has been a full-time caregiver to her son, Sean, who suffered extensive injuries in a 2005 auto accident at age 22. The most serious long-term evidence of the accident has been a traumatic brain injury, which has robbed him of the ability to walk and talk and placed other limitations on his physical body.

Ah, but not his mind, which is sharp and full of the same kind of witty and uproarious comments from a 20-something modern male. I know the vocabulary and style well: my own son is 28. The only difference is that Sean spouts all that with his communication board.

Jenny taught me more in that 90 minutes than college students can learn in years of pursuit of a degree. What many people do not realize is that something like a brain injury or stroke is an immediate life-altering situation. "Normal" ceases in that moment. That's it. There's no cure. There is only endless hard work and an ongoing hope for continued recovery, to reclaim portions of a life lost to a cruel injury that lies hidden from our view. And nobody knows what the future will bring.

Despite the initial heartbreak and daily challenges, Jenny and Sean have this amazing attitude: they live life. They absolutely refuse to wallow in self-pity and lamenting what might have been. Though she readily admits it's still an adjustment at times and there are always going to be some tough days, they've learned to move beyond the tragedy and truly appreciate life. The mom brought her three sons up to choose to be happy, and she and Sean have embraced that philosophy with even greater fervor.

And it shows in their radiant smiles, their shining eyes, and how they get out into the world and refuse to hide away. Yes, they're serious about warning of the dangers of drinking and driving, but they're even more determined to not let life pass them by.

My conversation with Jenny reinforces what I have learned about coping with strokes and brain injuries: attitude is 90 percent. Those survivors and caregivers who have chosen to focus on the positive, the possibilities and the gift of life itself are the ones who continuously make gains emotionally, physically and spiritually. Those who have faith and believe in something bigger than themselves also excel in everyday life and surround themselves with people they inspire and lift in unique ways.

What wonderful lessons for each of us, how we attract what we radiate. Bad things happen, but we human beings have been blessed with a capability to reach within and without to touch and enrich other lives … whether we're the ones lending or accepting hands of help.

What awesome powers we possess! What awesome people we can welcome into our lives! What awesome strides we can make when we give ourselves permission to live!

And thank you, Jenny, for giving me one of the most precious gifts in this world: you.

Written by Monica Vest Wheeler


Monica Vest Wheeler www.alzhelpbook.com
Blog http://monicavestwheeler.blogspot.com/
Turning Empathy into Action
Find me now on Facebook
And on Twitter http://twitter.com/alzheimersbook
Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
Fax toll-free 1-877-636-0634
info@copeandsurvive.com
P.O. Box 276
Peoria, IL 61650-0276

Sunday, August 18, 2013

Sue Austin - Creating the Spectacle!

This week, instead of taking a few minutes of your time reading, I'd like you to spend that time watching this video I got off Youtube. For those of you who are wheel chair dependent, you will enjoy how this person was able to take advantage of that.

Sue Austin is an artist who began using a wheelchair in 1996 after an extended illness that affected her mobility. Later, when she started using it, she says she "felt an amazing sense of exhilaration at being free to speed through the streets, mobile again". However, she found that responses from other people toward her changed. She realized these responses arose from the negative preconceptions many people attach to the wheelchair. Through her art she wants to change that.

Click on the following link, and at the bottom of the page that comes up, be sure to click on the video button near the bottom. It's the little white triangle in the black square :

http://www.wearefreewheeling.org.uk/?location_id=1849

Then, to hear her tell her story and see her Part 1 video, play this Youtube video:

http://www.youtube.com/watch?v=PCWIGN3181U


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Sunday, August 11, 2013

"What I have stinks, but that’s what I have to deal with"


The following article was written by professional writer, noted author and speaker, Monica Vest Wheeler, and originally posted on her blog. She has given me permission to reproduce it here on this blog. Monica's blog is titled "Turning empathy into action" and can be reached using this link:  http://monicavestwheeler.blogspot.com/  

She mostly writes about many different types of brain injuries and diseases, such as Alzheimer's, and occasionally writes one about stroke. She has published numerous books. According to her blog heading, Monica "...explores how we can lift ourselves and others by turning empathy into action … and the importance of the art of compassion in dealing with Alzheimer's, stroke, brain injuries and other life challenges." Monica is best known for her work on the Help ME Cope & Survive book series: http://www.monicavestwheeler.com/

Monica is also a very active volunteer for Retreat & Refresh Stroke Camp and arguably our best camp photographer. 

I hope you enjoy her writing and visit her blog. And be sure to browse her archived articles, too.

by Monica Vest Wheeler

I discovered that the line of people, bundled against the chill of the February wind, was longer than I expected when I opened the church’s door. But I should have known better as the man remembered on Saturday had touched more lives than he could have ever imagined.

Greg Winn lost his battle against a brutal form of Alzheimer’s far too soon. He was just a month and a half shy of his 60th birthday. Not even 60 years old. Everybody thinks Alzheimer’s is just an “old person’s” disease. It isn’t. Early onset Alzheimer’s robbed an incredibly vital man of an amazing life. Yes, 59 is young. It’s very young.

I met Greg in 2006 at the Alzheimer’s support group for newly diagnosed clients and immediate caregivers. This was that magical group of folks I’ve written about before, this amazing collection of individuals who let me into their private world so that I could educate more families and the public about the wrath and pain of Alzheimer’s.

At first, I didn’t understand why Greg was there. He was a kid to me. I thought at first he was the son of a parent with Alzheimer’s, but no, he was the one with Alzheimer’s, often accompanied by at least one of his devoted sisters, all in search of answers to “why?” and support. There were few answers to “why?” but there was an abundance of support.

Before the start of the October 2007 Memory Walk, which it was called at the time, Greg and I took advantage of the warm fall day to sit down and talk about what he was facing. I wrote in my book about Alzheimer’s:

“Greg is that stereotypical perfect picture of health and vitality. He exercises regularly, eats properly, is hard-working, intelligent, generous, a dad, brother to six siblings, in his early 50s and savoring life with great enthusiasm every day. He has everything he wants and something he doesn’t want … early-onset Alzheimer’s.

“Attired in running shorts and shoes, Greg prepares to lead the crowd at the annual fall Alzheimer’s Association Memory Walk. The gorgeous sky and hot sun make it more like summer than autumn, and that brings out hundreds of supporters who vow to walk for those who can’t and those who are here in spirit only. They all have a common goal: end Alzheimer’s disease.

“You’d never imagine that behind the stylish eyeglass frames and beneath the closely trimmed haircut is a man who’s battling early-onset Alzheimer’s with every source of energy he’s got.”

Greg told me that he had a good life working in Chicago as an accountant, never missing a day of work. Then he noticed some memory problems that were beginning to affect his work. His doctor referred him for an MRI, where the technician told him, “Take it one day at a time.” He laughs at that memory before his world flipped upside down with the diagnosis.

“One day at a time … That’s all I do. What I have stinks, but that’s what I have to deal with. I’m reconciled with it. This is my plight. This is what I have to do. I still get up every morning, still work and drive. That may be a problem at one point. I’m sure it will be. Other than that, I’m doing good, I‘m in great shape, I’ve got a great family. When the news came down, they were all around me. No ifs, ands or buts. They got me down here.”

That support system included four sisters and two brothers, who grew up in a tiny house where the girls shared one bedroom and the boys the attic. After the memory symptoms snowballed, he admits he couldn’t deal with it and moved back home to be close to family.

His siblings offered substantial emotional, physical and financial support as he copes with unexpected life changes, having to find work that didn’t tax his memory skills too much. It’s not the most exciting job in the world, but “I’m doing something.”

Despite everything, he says, “I couldn’t be in a better situation.” Is it hard for him to ask for help?

“I haven’t got to that point yet, but I probably will sometime. Nobody knows. It’s just the circle of life. It’s a tough thing not knowing what’s going to happen or how fast it’s going to go.”

A few months earlier, he had traveled to Washington, D.C., to offer testimony on the need for additional funding and to show the world that Alzheimer’s does not claim only the elderly. “Just get some money. That’s what we need. I feel like I’m contributing something. I feel like I’m helping some people …”

Greg was certainly not the voice or face one would expect to help kick-off the annual walk as the growing crowd listens …

“My name is Greg, and I was diagnosed a year and a half ago.” He pauses. “Hold on. I’m having a Greg moment here and need to stop for a moment.”

“It’s okay,” a female voice calls out. He smiles.

“I have to deal with this every day of my life. It’s tough, but I don’t dwell on it. I’m doing the best I can, and I’ve got a great family. They’re helping me tremendously, and I can’t thank them enough. I’m doing all right now, but I don’t know what the future holds …”

Several of Greg’s siblings cheered him on from the crowd, so proud of their brother who had refused to hide from the world and who had vowed to make a difference any way he could.

I can still hear and see that moment, which seems so long ago, yet was like yesterday. I was teary-eyed then and on Saturday, when I sat in the filled church for a celebration of Greg Winn’s life.

While absorbing the meaning of those two very different occasions, I reflected on my own life mission as I comprehended how well Greg had accomplished his. He put a real face on Alzheimer’s and it’s brutal toll and worked so hard to draw more attention to it. And I was so blessed to know him and help tell his story in my book.

I also realized that I had accepted a calling that would lead to more moments like this, falling in love with so many individuals who would lose their battle against Alzheimer’s. I have and will shed many tears and suffer heartache at loss, but I wouldn’t change what I want AND need to do. I’ve also lost stroke, cancer, traumatic brain injury and brain tumor-brain cancer survivors who had won special places in my heart as I’ve allowed their stories to become part of me.

My soul is constructed stronger because of each of these moments and individuals. I follow one of my firm beliefs: Tissues are cheap; human relationships are priceless. I just keep stuffing my pockets and my heart …

You won the race, Greg!





Written by Monica Vest Wheeler

Monica Vest Wheeler www.alzhelpbook.com
Blog http://monicavestwheeler.blogspot.com/
Turning Empathy into Action
Find me now on Facebook
And on Twitter http://twitter.com/alzheimersbook
Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
Fax toll-free 1-877-636-0634
info@copeandsurvive.com
P.O. Box 276
Peoria, IL 61650-0276

Sunday, August 4, 2013

Intarsia

As one of this year's fund raisers, Stroke Camp is thrilled to raffle off chances to win one of three beautiful intarsia wood carvings made by stroke caregiver Rob Herb from Cheyenne, WY. First place is an American Eagle intarsia. Rob spent countless hours creating this wood carving from different types of wood imported from all over the world. Rob also made a second place praying hands intarsia and a third place wood burned eagle plaque. I've included pictures of the three below.

You can purchase your raffle tickets 
online at:
                                  www.strokecampshop.org 
or by mailing a check to 425 W. Giles Lane Peoria, Illinois 61614. Please include a memo with the check stating that it is for the raffle tickets. We will mail you your ticket stubs so be sure your name and address are included.

Ticket prices are: 1 ticket for $5, 3 tickets for $10, and 7 tickets for $20. All proceeds go to fund Retreat & Refresh Stroke Camp.

The winner will be drawn on November 9, 2013.


Don't know what intarsia is? Following is a definition taken in part from Wikipedia, the free online encyclopedia. Following the definition is the "back story" on how Rob got involved in doing intarsias and why these particular ones have such special meaning to him, his family and now, us. I've included, within Rob's story, photos of the actual carvings being raffled by us. 

Intarsia
Intarsia is a form of wood inlaying. Inlay is a decorative technique of inserting pieces of contrasting, often colored materials into depressions in a base object to form patterns or pictures that normally are flush with the matrix. In a wood matrix, inlays commonly use wood veneersIn woodworking, veneer refers to thin slices of wood, usually thinner than 3 mm (1/8 inch), that typically are glued onto core panels typically, wood.

It is thought that the word 'intarsia' is derived from the Latin word 'interserere' which means "to insert". Intarsia is a woodworking technique that uses varied shapes, sizes, and species of wood fitted together to create a mosaic-like picture with an illusion of depth. Intarsia is created through the selection of different types of wood, using their natural grain pattern and color (but can involve the use of stains and dyes) to create variations in the pattern. After selecting the specific woods to be used within the pattern, each piece is then individually cut, shaped, and finished. Sometimes areas of the pattern are raised to create more depth. Once the individual pieces are complete, they are fitted together like a jig-saw puzzle and glued to wood backing which is sometimes cut to the outline shape of the image.

The Story
Here's the "back story" from Rob:
It all started with 2 items:
[1] In April 1999, we were searching for our older daughter's godmother, whose 1st husband (Don Dwiggins) was killed in Vietnam and with whom we had lost contact. After some searching and emailing, we found Lynn Dwiggins Honeycutt [& had lots of tears] and convinced her to attend our 35th reunion in 2002. BTW, the phone call with Lynn occurred on the 14th of April, 1999, Judy's 55th birthday. That was one heck of a birthday present. FYI, I told Boyd that Don Dwiggins was with the 25th Infantry Division when he was KIA, so I have a special bond with anyone who served with the "Tropic Lightning" Division.

[2] Our 2nd granddaughter was born in June 1999 with some medical problems & was medevaced to Houston, so we asked Dr. Tom Parr, a 1967 USMA grad & orthopedic surgeon living in Houston, to explain some of the medical jargon for us. Also, Tom and his wife were the ones who ultimately got us reconnected with Lynn Honeycutt because Tom was working on Don's Memorial Article for the Assembly Magazine. Rob made his 1st burning of his class crest in 2001 for Tom in thanks; when we realized how much he appreciated it, it got us thinking about making them for Surviving Family Members (SFMs) of classmates who died since we graduated in 1967. The first presentations were done in November 2002 at our 35th Reunion, and we've been doing them ever since then. Lynn is now the class representative for our Surviving Family Member group.


In Honor of Donald H. Dwiggins, Jr.
After presenting Tom with the Class Crest at the Ski Reunion in Breckenridge, CO, we contemplated how we could 'honor' Donald H. Dwiggins, Jr.'s death. In February 2001, we decided to make the first-ever [for us] intarsia of the class crest with the names of my 29 classmates who were killed in Vietnam inscribed above the crest (see attached photo). It took both of us about 16 months to make, from scratch, with mostly hand-sanding and a small belt sander. This is the first piece where purple heart wood (the backing for the inscription) was used to honor my classmates who were wounded or killed in Vietnam. Although the feathers on the eagle's wings seem to be mismatched, we tried to incorporate as many different woods as possible to signify the diverse backgrounds of the members of the Class of '67. It was dedicated at The Wall at a Memorial Service in June 2002 and is displayed in the South Conference Room of Herbert Hall, the Alumni building at West Point.


We have continued !

1st Place (16" x 20")
All of our intarsias are made of natural woods with no stains applied. Since that first one, we have tried to incorporate some blood wood or redheart to remember the blood that has been shed by our men and women in uniform to keep our Great Nation free, some white or black ash to signify the Common Book of Prayer's graveside rights reference to 'ashes to ashes' and dust to dust, and purple heart wood to honor those who have been wounded or killed in battle. The Eagle & Flag intarsia pattern is one that Judy adapted from a calendar picture we've had for 10 years. 
3rd Place (9" x 12")



This is a wood burning of the Intarsia pictured above. 


2nd Place (6" x 10")





The Praying Hands is a pattern that we found in one of my woodworking/intarsia books. Judy has one similar to the one you'll be raffling (slightly modified) hanging in our living room.




Not part of the raffle
As for the crosses that we've made, that's something that evolved from the care that Judy received after her stroke in 2004. The medical professionals we've come in contact with since her stroke are truly a gift from God. I started making them around 2005 after I got some patterns from one of my Masonic friends. I think the first one I made was for Judy's Occupational Therapist who was determined to find a way to get Judy's right hand functioning again. Since then, we've been providing them to the good people who continue to cross our path and give us hope for the future.

If you need any more info, please let us know.

Warm Regards,
Rob & Judy

Here are the schematics Rob used to make the above intarsias:




You can purchase your chances to win online at:
                                  www.strokecampshop.org
or by mailing a check to 425 W. Giles Lane Peoria, Illinois 61614. Please include a memo with the check stating that it is for the raffle tickets. We will mail you your ticket stubs so be sure your name and address are included.

Ticket prices are: 1 ticket for $5, 3 tickets for $10, and 7 tickets for $20. All proceeds go to fund Retreat & Refresh Stroke Camp.

The winner will be drawn on November 9, 2013.

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Sunday, July 28, 2013

Official Beer, Bags and BBQ Posters

As you know from our July 7th blog article, we are hosting a Beer, Bags and Barbeque outing August 10th in the Peoria, Illinois area at Ravina on the Lakes. At that time, I promised to show you the official posters for the event including the Central Illinois Cruisers car Cruise In that we are hosting there. Here they are :






There have been some minor changes since our last posting so I included the rest of July 7th article with the changes highlighted in yellow.


Here's what has been planned:

Date: Saturday, August 10, 2013
Place: Ravina on the Lakes 


Activities: 
         Food 5pm-8pm, 
         Bags Tournament 3pm-9pm,
         Classic Car Cruisin' 4pm-8pm, 
         Family Fishing 4pm-8pm (Bring your own tackle, bait  
         will be provided),
         Music by Southern Cross 7pm-9:30pm

Meal Serving Time: 5:00-8:00

Meal Cost: 
         $25 per person, 
         $12.50 for children 5-12, 
          Children under 4 free
Meal: 

         Hickory Smoked Pulled Pork,
         Corn on the Cob, 
         Cole Slaw, 
         Chips, 
         Fresh Cantaloupe, 
         Watermelon, 
         Cookies, 
         Iced Tea and Lemonade 

Cash Bar: 4:00-10:00 

Bags Tournament (Recreational):

         Registration starts from 3pm to 3:45
         Reading of rules starts at 3:45
         Competition starts at 4pm goes til 9pm

         Double elimination
         $40 per team (2 person teams)
         Prize Money:
             1st  -  $250
             2nd - $150
             3rd  -   $75
             4th  -   $25 


Bag Toss Drawing For Prizes: 
        Eight Bags for $10 
        Three prizes in the drawing valued at $100 each
        Each bag in the hole gets into the drawing
        
You must be present to win 

Music by The Southern Cross 7:00-9:30

To Register: www.BeerBagsBBQ.com  
Or Call: 309-688-5450 
The web site should be avail by Tuesday 7/9.

We are still in need of volunteers to help with the event. If you are interested in helping out, here is the list of positions that need filled. If one of these interest you, call 309-688-5450.

Volunteer positions available and number of volunteers needed:
        Bags Tournament Registration - 2 people 
        Master of Ceremonies - 1 person
        Set-Up - 4 people
        Reporting Table -  2 people
        Bag Toss - 4 people
        Preparation on Friday, shuck sweetcorn - 4 people
        Car Parking - 4 people
        Meal ticket purchase - 2 people
        Ice Cream Stand - 3 people
        Family Fishing -  2 people + Chuck Gabbert 
        General - 6 people

Sign up..Register..Come out..Hope to see you there
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To get there: 
The address is 5326 W Charter Oak Rd. Take War Memorial Drive (Route 150) west to where it intersects with Charter Oak Road and Allen Road and turn left onto Charter Oak Road. Follow Charter Oak Rd and go under the Interstate 6 overpass and it should be coming up on the left.  







































































Sunday, July 21, 2013

Caregiving: The guilt was killing me!


Yet another fine article written by Monica Vest Wheeler, and originally posted on her blog. She has given me permission to reproduce it here on this blog. Monica's blog is titled "Turning empathy into action" and can be reached using this link:  http://monicavestwheeler.blogspot.com/  

She mostly writes about many different types of brain injuries and diseases, such as Alzheimer's, and occasionally writes one about stroke. She has published numerous books. According to her blog heading, Monica "...explores how we can lift ourselves and others by turning empathy into action … and the importance of the art of compassion in dealing with Alzheimer's, stroke, brain injuries and other life challenges." Monica is best known for her work on the Help ME Cope & Survive book series: http://www.monicavestwheeler.com/

Monica is also a very active volunteer for Retreat & Refresh Stroke Camp and arguably our best camp photographer. 

I hope you enjoy her writing and visit her blog. And be sure to browse her archived articles, too.
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by Monica Vest Wheeler

Guilt is one of those power words that brings down governments and sends children into hiding.

No, I didn't commit a capital crime or break something. I just felt this overwhelming guilt for deciding to leave town for a couple of days to see family and friends and interview stroke survivors and caregivers. I felt guilty for being away from my dad-in-law for more than a day.

I've been with Pepaw almost every day for two months since we brought him here to live in Peoria so we could take care of him. I did take Monday and Wednesday off this week, and yet Thursday, as I picked him up from bowling and attended the Alzheimer's support group meeting with him, guilt began to sweep me for not being here for him this weekend.

Caregiver guilt: it's a killer.

I gave myself the same pep talk I give other caregivers when I speak to groups: you've got to take time for yourself or you're of no use to anyone.

The caregiver inside me shouted: what a crock of you-know-what! Shame on you for ABANDONING your father-in-law! Tsk tsk tsk!

I know I'm a Gemini, but these two voices were about to deafen me.

Here's the first debate:

• My husband will reassure me that NOBODY can take care of his dad as well as me. What a smart, smart man I married.

• But I have to let someone else fill in and learn the ropes of the everyday stuff. This is the weekend my son needs to have some one-on-one time with his grandpa so that Pepaw doesn't forget who he is.

Here's the second debate:

• I need to make sure he's out doing stuff HE wants to do every day.

• Hey, Pepaw is probably trying to find a polite way to say, "Hey, I need a vacation. I want to watch TV all day."

And there are a dozen more arguments that are trying to hold me captive.

I now realize the source of and solution to my guilt: love.

In two months, I've truly fallen in love with this man. I'm closer now to him than at any other time in the 36 years we've known each other, including the last 31 as his daughter-in-law. Sure, I'd given him hugs when we'd see each other after long separations and when it was time to say goodbye. Now I give him a hug every day I see him because he's become very special to me, more than just my dad-in-law.

I tell him every time I see him that I love him. And he tells me the same.

I care about his everyday life and want to be sure he eats properly and gets his medication. I've endured uncomfortable nights in a rocker-recliner so I could be close by during his first nights in new places, so that he wouldn't be confused or lost or unable to find his way to the bathroom at 3 a.m. I've helped him shower and made sure he had clean clothes. I've taken him to doctors' appointments and tried to ask all the right questions so he gets the best care. I've sat in bowling alleys and bought him cigarettes.

And just like every caring caregiver I've ever met, I do it because I love him. I want him to be happy, healthy, comfortable and pain-free. This is what we do for our loved ones. Hence, the name.

My guilt is now eased by the knowledge that I will come back after a few days away refreshed and more alert to meet his ongoing needs. That is how I will become a better caregiver by giving myself some care.

And by golly, I'm worth it! Pepaw tells me so!

Written by Monica Vest Wheeler


Monica Vest Wheeler www.alzhelpbook.com
Blog http://monicavestwheeler.blogspot.com/
Turning Empathy into Action
Find me now on Facebook
And on Twitter http://twitter.com/alzheimersbook
Phone 1-309-682-8851
Phone toll-free 1-877-267-4640
Fax toll-free 1-877-636-0634
info@copeandsurvive.com
P.O. Box 276
Peoria, IL 61650-0276

Sunday, July 14, 2013

Heather, Lily and Hope

This weeks article might seem a bit out of place for a Stroke blog since it deals with cancer but, really, when you think about it, a caregiver is a caregiver is a caregiver regardless of why. The patience, work, hopes and devotion required are the same. 

Here is a letter I received recently from a man named Cameron. He wanted to share his experiences with us and I wholeheartedly welcome them. I feel certain you will, too.  

Here's his letter, followed by his story:Hi,

I came across your blog and really identified with a lot of your writing. My name is Cameron Von St. James and I was thrown into the role of caregiver when my wife, Heather was diagnosed with a very rare and deadly cancer called mesothelioma, just three months after the birth of our only child. We were initially told that she could have less than 15 months to live, but she was able to defy the odds and eventually beat the cancer. During her treatment, I had to learn quickly to be an effective caregiver, and there were many times when I became overwhelmed by the role, but we managed to fight through it together.

I was wondering if you would allow me to write an article about my caregiving experience for your blog? I know that this cancer isn't necessarily the focus of your blog, but I think that caregivers for any sort of illness often face many of the same challenges. A positive, uplifting story about overcoming illness of any kind can be a huge help to caregivers when they're facing a challenge! I'd love to share this message with your readers who might take something away from it. Please let me know if you’d be interested in seeing and sharing an article about our story.

Thanks so much for your help!

Cameron
*****************
Here is Cameron's and Heather's story:

On November 21, 2005, my wife Heather and I had our entire lives shook to their very foundation because, on that day, she was diagnosed with malignantpleural mesothelioma, a very serious form of cancer.  It's also the day I took on the role of caregiver, a role I never thought I'd have to assume, and a role I was in no way prepared for. Just three months prior to this devastating news, we'd been celebrating the birth of our only child, our precious daughter Lily. We were heading into the holiday season, and joyfully anticipating Lily's first Christmas, when everything started falling apart.

The realization of what I could expect as a caregiver began to set in even as we were leaving the doctor's office right after he broke the news to us. He advised us to seek the advice of a specialist, and gave us numerous options in that regard; the local university hospital, a regional hospital with a great reputation, but lacking a mesothelioma program, or a mesothelioma specialist in Boston called Dr. Sugarbaker. We quickly picked option three, and could only pray that this specialist would save her.

The next two months passed in a chaotic blur. Prior to Heather's diagnosis, we both had jobs and set schedules, that was now a thing of the past.  Heather was unable to work at all, and I was only able to manage part-time hours. Between doctor appointments, traveling to Boston and caring for Lily, I gradually began to feel overwhelmed and helpless.  Anxiety that I would end up a penniless widower raising Lily alone began to creep in and over-take my thoughts. There were times when I would curl up on the floor and cry like a baby.  But never, ever, when Heather could hear or see.  I had to be strong for Heather.  That was my mission.  That was my purpose.  This sense of responsibility got me through these rough moments, and I resolved to be there for her no matter what.

Our saving grace was love and support from family, friends, and even strangers. The best bit of advice I can offer to anyone in our same situation is that if someone offers you any kind of help - take it. Don't be shy or too proud. It's one more thing off your very full plate. It will also serve as a much needed reminder that you and your loved one are not alone. You have family and friends who care about you and are willing to lend a helping hand if you ask them.  Don't be afraid to ask them.  You'll probably be surprised how eager people will be to pitch in - even if all you need is to vent for a few minutes. Learn to say yes to help without feeling ashamed.  Asking for help in times of distress is a sign of strength, not weakness.

Being a caregiver for someone who is seriously ill is a tough job. There's no point trying to sugar-coat it. It's very hard to deal with that kind of stress, uncertainty and anxiety on a daily basis. The fact is, this could be the hardest challenge you ever face in your entire life. You're going to experience times where it's very hard to resist being swept away by emotions like fear and anger.  It's extremely tempting to wonder, "Why me?" It's also very easy to ruminate on the unfairness of life, and to ponder how others walk around totally healthy while your loved one suffers. Don't beat yourself up for this, but don't let these emotions take you over. Its important to stay hopeful no matter what – hope is the most powerful weapon against despair.

It took years for Heather and I to return to a normal life, but we did. After mesotheliomasurgery, radiation and chemotherapy, she beat mesothelioma and is celebrating seven years cancer free.

Being a caregiver taught me many valuable lessons during my wife's journey. I found that accepting help from those around you should not be seen as a sign of weakness, but as the ability to accept love from those around you. Being a caregiver for a loved one taught me to advocate for a loved one in ways I'd never thought were possible for me previously, which also led to me learning how to manage my time and stress levels more constructively. When Heather's health improved, I returned to college, earning a degree which would have been much more difficult previously, as I lacked the necessary skills that being a caregiver provided me.  Most importantly, I learned the incredible healing power of hope.  Never give up hope, and you may find that you and your loved one are capable of accomplishing more than you ever imagined was possible.

************************************************************************************
Thanks for sharing that Cameron. One of the most important things a caregiver can learn is that they are not alone. There are others going through the same things and if we can connect somehow the road can get a little easier. 

One of the many things we do during our weekend Stroke camps is set aside time for caregivers to meet with each other and share their experiences and the ways they cope. Separately, the stroke survivors get together, too, and share their experiences as best as they can.  
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Sunday, July 7, 2013

Beer, Bags and Barbeque August 10, 2013

Good news, everyone! We are hosting a Beer, Bags and Barbeque outing August 10th in the Peoria, Illinois area at Ravina on the Lakes. In a couple weeks, I'll display on this blog, the official posters for the event and the car Cruise In. 

To get there: 
The address is 5326 W Charter Oak Rd. Take War Memorial Drive (Route 150) west to where it intersects with Charter Oak Road and Allen Road and turn onto Charter Oak Road. If you're heading toward the new mall it's a left turn. If your heading from the new mall it's a right turn. Follow Charter Oak Rd and go under the Interstate 6 overpass and it should be coming up on the left.  

Here's what has been planned so far:

Date: Saturday, August 10, 2013
Place: Ravina on the Lakes 


Activities: 
         Food, 
         Bags Tournament
         Classic Car Cruisin' 4pm-8pm, 
         Family Fishing 4pm-8pm (Bring your own tackle, bait  
         will be provided) 
         Music by Southern Cross 

Meal Serving Time: 5:00-8:00

Meal Cost: 
         $25 per person, 
         $12.50 for children 5-12, 
          Children under 4 free
Meal: 

         Hickory Smoked Pulled Pork,
         Corn on the Cob, 
         Cole Slaw, 
         Chips, 
         Fresh Cantaloupe, 
         Watermelon, 
         Cookies, 
         Iced Tea and Lemonade 

Cash Bar: 4:00-10:00 

Bags Tournament (Recreational):

         Registration starts from 3pm to 3:45
         Reading of rules starts at 3:45
         Competition starts at 4pm goes til 9pm

         Double elimination
         $40 per team (2 person teams)
         Prize Money:
             1st  -  $250
             2nd - $150
             3rd  -   $75
             4th  -   $25 


Bag Toss Drawing For Prizes: 
        Eight Bags for $10 
        Three prizes in the drawing valued at $100 each
        Each bag in the hole gets into the drawing
        
You must be present to win 

To Register: www.BeerBagsBBQ.com  
Or Call: 309-688-5450 
The web site should be avail by Tuesday 7/9.

We are still in need of volunteers to help with the event. If you are interested in helping out, here is the list of positions that need filled. If one of these interest you, call 309-688-5450.

Volunteer positions available and number of volunteers needed:
        Bags Tournament Registration - 2 people 
        Master of Ceremonies - 1 person
        Set-Up - 4 people
        Reporting Table -  2 people
        Bag Toss - 4 people
        Preparation on Friday, shuck sweetcorn - 4 people
        Car Parking - 4 people
        Meal ticket purchase - 2 people
        Ice Cream Stand - 3 people
        Family Fishing -  2 people + Chuck Gabbert 
        General - 6 people

Sign up..Register..Come out..Hope to see you there
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