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Give Of Your Time, Talent and Treasure

I want to send our Best Wishes to all of you who read and support our Charcot Awareness Education Foundation, It is so exciting to know we have friends around the world. We hope those of you who are experiencing foot pain or are going through foot surgery find the awesome doctor and an answer to your problem.

Also take time to reach out to someone you haven’t touched base with in many many years, or someone who is alone much of the time. Your smile, presence and warmth will make a difference in their life.

A friend of mine who has worked with nonprofit organizations for years often says those who support foundations give of their time talent and treasure. This past year I really began to see this happening in our Charcot Foundation. It takes a lot of volunteer work, as many long hours were put in on the Mardi Gras float which brought in about $1500. This sparked us enough to work on the Great Give which brought in double what we got the year before.

This allowed us to purchase the Charcot Foundation’s own computer and printer. They have made life easier.

We were again selected to take part in the Mardi Gras nonprofit miniature float competition in February of 2017. Not far away. We are excited about an upcoming Charcot flier, curriculum development and some stories of Charcot patients to be published.

Thanks to our awesome donors making this possible. Please join us as a partner. Tell us your story if you are a care giver of a Charcot patient , or are a Charcot patient, or you just want to help the Charcot foundation make a difference in someone’s life.

Make a difference in 2017. May it be your most rewarding ever.

Happy New Year!

Please donate to help inform the public about the damage Charcot Bone Deterioration disease causes. Please send your donations to:
Charcot Awareness Education Foundation
P. O. Box 3902
Silverdale, WA 98383-3902
We are an approved IRS 501(c)(3) nonprofit foundation and an approved Washington State Charities Program

Message by the Founder Annita Shaw

Brought toby Charcot Awareness Education Foundation

Charcot Awareness & Great Give May 3

Top of Post Gr Give
Card Front
Fact Sheet inside front
How to donate2016 Sponsors

This weeks article was contributed by Founder Annita Shaw
Brought to you by Charcot Awareness Education Foundation

Humor: A Happy Prescription

Laughter is a good form of medicine, in fact one of the best. Put a smile on someone’s face and many problems disappear. We found this to be true when my husband, Max, was undergoing his x-ray treatments for prostrate cancer. Walking into the waiting room finding everyone in doom and gloom, he decided to bring in some jokes and give them to the nurses. They hated to see him leave after his thirty fifth visit. They said his humor had really made a difference both for them and the patients.

Ken ShawMy father was one who loved to laugh. His ability to remember jokes was amazing. He was a farmer in Nebraska, an occupation that had lots of times when a mental pick up was needed. He had heart surgery in Seattle, his grandson, Justin, told a joke to his surgeon that turned a frown to a smile.

The entire time I worked with Dr. Roukis and his staff with my Charcot Foot, we exchanged humor, including teasing. This always seemed to eliminate any stress that might have been.

It has been proven that laughter is very good medicine. Norman Cousins (1912-1990) was editor-in-chief of the “Saturday Review”, advocate for world peace and later dealt with the issues of illness and healing. Cousins, himself, faced numerous health issues. In 1964 doctors discovered the connective tissue in his spine was deteriorating. The condition was called ankylosing Spondylitis. Chances of survival approximately 1 in 500. Faced with this, he needed to figure out his roll in his own recovery. He eventually did three things, not necessarily what the medical community wanted to hear.

First, researched all the drugs he was on. They were depleting his body of Vitamin C. Doctors Norman Cousinsagreed to take him off several of the drugs and inject him with large doses of the supplement.

Second, he decided to check himself out of the hospital and go to a hotel. All of the hospital practices he determined was not an environment that would contribute to his healing. I believe, because of Cousins actions, Cousins found after laughing so hard many things changed in the hospitals, such as hygiene practices, over medication, as well as, negativity.

Third, He got a movie projector and a large supply of funny films, including Candid Camera tapes and old prints of Marx Brother’s movies. Cousins found after laughing so hard at the films the first night in the hotel, he slept several hours pain free. When the pain returned he simply turned on the projector.

1 Smiling CatNow off the drugs, taking Vitamin C and laughter, Cousins described being in a state of euphoria and as he continued to laugh, within a few weeks he was back at work at the Saturday Review. He continued to heal.

There is much written on Cousins and laughter as healing. you could check out the web site TheHealingPoweroflaughter, His book Anatomy of an Illness is enlightening.

Keep laughing. Stay positive. Take charge of your own health.

This weeks article was contributed by Founder Annita ShawBrought to you by Charcot Awareness Education Foundation

Let’s Take Another Look At Charcot Foot

Since I was diagnosed with Charcot Foot, I have marveled at my findings. Such as, those in the medical field that do, or do not seem to know about Charcot Foot. I have found those with experience in fitting people with orthotics, or prosthetics seem to be able to identify those with Charcot Foot best. They probably won’t tell you what the disease is, but will refer you to a Doctor, or clinic that will.

Symptoms of CharcotI, like many I have talked to, had no idea when diagnosed with Charcot had any idea what it was. The first response was shocked silence, then “And that is what?” The explanation I received was that is was a bone deterioration disease. Nothing could really be done to stop it. No pills and surgery wasn’t recommended. Since I had the pain, discomfort and deformity coming on, and Neuropathy masked much of the problem, I didn’t really think it was too serious. I guess you could say I was in denial, but not completely as I had my husband Max research Charcot on the computer. We found very little information. Just enough to have a doctor refer us to the limb preservation clinic at Madigan Army Hospital where the man who fitted me with my orthotics had said I needed to go months earlier.

Over the past, nearly, four years I have learned a number of things positive and negative. There is help out there for those with this devastating disease. Your best bet is to find a good foot and ankle surgeon. If you are a diabetic, using corticosteriods, or an alcoholic, these are the top three diseases that accompany and expedite this malady. You really need to talk with your doctor and get those under control, so your health is stable.

Others, I have talked to, were told by their doctors the amputation is easier to deal with Foot Care 2than the recovery time from an operation to repair or rebuild the foot. They were also told surgery won’t work. Since my surgery in 2006, I feel so much better and am able to walk. I know of another Charcot patient who had surgery 25 years ago and he walks well. Some of the specialists would rather cut toe nails in the “old folks” home than use their skills and training to help the Charcot patient have a better quality of life. Statistics say there are approximately three million diabetics in the USA alone that have Charcot Foot and aren’t being diagnosed and will loose their feet to amputation. Amputees can still walk, but the majority of those I have met with Charcot use a wheel chair because it is easier than learning to walk with the prosthesis. They can transfer to a chair , the toiklet or a bed. Most are over 60 years old and not flexible as a younger person.

Your feet are so important to your independence. Charcot Foot results in a severely deformed and disabling foot that is difficult to shoe and brace properly. You could have recurrent infections and ulcerations with a final result amputation. Check your feet daily, note any changes and keep them healthy. Contact a Charcot knowledgeable professional if these things happen.

This weeks article was contributed by Founder Annita ShawBrought to you by Charcot Awareness Education Foundation

Kitsap Great Give 2015

CAEF is participating in the 2015 Kitsap Great Give on Tuesday, May 5, 2015. Please take this opportunity to donate to nonprofits. This is a one-day charitable event, so be sure to check back next Tuesday!

Please visit the Charcot Awareness Education Foundation page at the Kitsap Great Give.

Diagnosis of Charcot Foot and How

Though Charcot was discovered by Jean-Martin Charcot in France in 1868, It was not discovered in the diabetic patient until 1936 in the USA. One reason given was that the diabetic didn’t live long enough until that point in time.

I was talking with a nurse that is a diabetic educator last week and learned that she was educated on the east coast to diagnose Charcot Foot deformity in the early 1960’s. She worked in the south before coming to the west coast. She placed strong emphasis on neuropathy as the reason for much of the Charcot diagnosis.

She stressed that a diabetic have the feet checked. The exam would not only be finding out the extent of neuropathy in the feet, but for the doctor to x-ray and check the foot for bone placement, checking for any abnormal structure. This should be done yearly as the foot can change gradually. Mine did, but for some reason I didn’t think this was a problem.

From above notice bulge on the arch.  Notice no arch showing on the side of foot.

From above notice bulge on the arch. Notice no arch showing on the side of foot.

Had a doctor told me to keep track of any changes in the foot and let him know it might not have gone so long. Maybe it wouldn’t have been diagnosed as arthritis for nearly 10 years before I was told I had Charcot Foot.

Research will some times tell you, you have to have neuropathy a long time, at least 10 years before Charcot will show up. This is maybe one of the reasons the diabetic needs to have the feet checked every year. Also, many who are diagnosed with Diabetes may have had it for 10 years or more before they were diagnosed.

It puzzles me as to why it seemed to become less important if those in the medical profession were taught about Charcot in the 1960’s. Maybe other things took presidence. Maybe someone more important or who had money to put behind another disease suddenly became more important.

Hardware in right foot.  A successful surgical repair.

Hardware in right foot. A successful surgical repair.

Jean-Martin Charcot is reported to have said: “To learn how to treat a disease, one must learn how to recognize it.” And “In the last analysis, we only see what we have been taught to see.”

Message by the Founder Annita Shaw

Brought to you by Charcot Awareness Education Foundation

Charcot Foot Deformity Awareness An Issue

Six years ago we, my husband and I, began this non profit foundation Charcot Awareness Education Foundation. Because we are newly formed and most people have never heard of Charcot Foot, it has been a rather enlightening experience. especially when trying to raise money so you can really begin to help people. Most of the funds raised for the foundation presently, are our own time and money with the assistance of some friends and several doctors and other professionals not involved with the feet. Odd right? We think so. However, if it hadn’t been for Dr. Thomas Roukis and Dr. Valerie Schade, my foot surgeons, this foundation wouldn’t exist. You see, I have Charcot Foot and was able to avoid amputation. Something I want for everyone with foot deformity. They have continued to encourage me and support our efforts.

There are numerous ways to get money for worthy causes, ask the general public, grant write, fund raising events, mailers, conferences, and speakers to mention a few and these all take money to raise money. Some business’ actually give you opportunities to acquire funds.

We are going to take part in such, as it is a contest for non profits. We were selected to compete in the local casinos Fat Tuesday Float Parade

The Dragon's head is made entirely from papier mach

The Dragon’s head is made entirely from papier mach

February 17. Only non profits can enter and only 20 are selected to compete. You build a float to represent your foundation. The float must follow specfic dimensions no more than 6’ tall, 6’ long and 2 1/2’ wide. It is pulled on a child’s red wagon which the casino gives you. They give everyone selected $500 and a chance to win more by being selected first, second, or third in the competition. There is a theme and judging criteria.

The Dragon's body is covered completely in paper mach

The Dragon’s body is covered completely in paper mach

Dragon’s body for the float and the rest of the papier mache. We have nearly two months to complete the float. It goes on display January 17, yes that is Saturday. Is it finished? Almost. Everyone who comes through the casino doors has a chance to vote on their favorite float prior to the parade competition. Fat Tuesday the float is pulled around the parade route in the casino so everyone can see it. They pass in front of the judges viewing stand for the final test.

Though, there has been a lot of stress, planning and problem solving I am thrilled with the chance to do this event. I chose to create a dragon for several reasons. first was because my youngest Charcot patient is now 11 and is Chinese. She lives in Ohio and is an inspiration to me as she is now in remission and enjoying her world. Second,where some of the most popular slot machines at the casino use the dragon theme. It also was a symbol in European history where the knight would slay the dragon to save the damsel in distress.

This is the Casinos third year of sponsoring the event. They are trying to make people aware of available foundations and services in the area. It has been a lot of fun for everyone. Those with the floats hand out information about their foundation, as well as, the typical Mardi Gras treats like beads and candy during the parade

Do wish you could all be here to help us celebrate our foundation, its sixth birthday and the success it has had so far. We thank Clearwater Casino for celebrating non profit foundations in our local area and giving us this opportunity.

If you would like to help us please send your donation, any amount helps, to Charcot Awareness Education Foundation PO Box 3902, Silverdale, WA 98383-3902. It is greatly appreciated.

Annita Shaw – Founder

Brought to you by Charcot Awareness Education Foundation

What Makes A Perfect Gift?

This is the time of year many people around the world celebrate religious events. Now, a time to reflect on the past year and give thanks for the blessings that have come along. A time to thank a higher power for guidance and assistance to achieve. If you have followed Bonnie and my stories over the past two years, I’m sure you have noticed we are both very thankful for the blessings we have been given as people with Charcot Foot.

I was raised on a farm in western Nebraska by Christian parents, though quite poor by today’s standards. I had no idea we were poor. It wasn’t an issue. We merely did with what we had and no one felt sorry for anyone. In fact they helped each other.

My mom made many of my clothes. We didn’t go hungry as we raised our own cattle, hogs and chickens and a large vegetable garden. She sold tomatoes, cabbage and lots of sweet corn. She saved this money for things we needed during winter and spring. Mom canned most of our food until the home freezer came to be. We did freeze beef, pork, chicken and corn, but that was kept at our local turkey processing plant that had wire cage storage boxes that people could rent to store their frozen food. That meant driving several miles to get it. Our refrigerator was an Ice box. Men in the area would cut ice on the river and store it in an ice house near the river. Those that helped harvest the ice could get the ice at the ice house to put in their ice box when they needed it.

I was just big enough to look over the edge of a table when my parents had butchered a hog. The meat was on a large table in our basement and my parents were wrapping the meat to take to the turkey plant to freeze. It was near Christmas and I was so excited every time I saw a present. I was told we didn’t have money to buy gifts for everyone, sooo… As I came down the long stairs to the basement, I saw all those packages. I wanted to give one of them to an elderly couple I had adopted as my grandma and grandpa. My parents tried to discourage me as they told me the package I had picked out had pork chops in it and it wouldn’t make a very good gift. Apparently I liked pork chops and wouldn’t agree. They finally gave in. We got into the car and drove to their home. I presented them with my gift. They were thrilled. However, I didn’t learn until later that was the first meat they had eaten in weeks. They had canned dandelion greens from their yard and were living primarily on that. Need I say when the word got out, the neighbors and friends saw to it that they were fine from then on.

As I look at our world at this time, I really wonder what has happened. Who or what has gotten in the way? I look at all the rules and regulations that have come about to “help or protect” us from ourselves. I wonder if the “Greatest good for the Greatest Number was really the answer to many probems. People afraid to say something for fear it will offend, or it will be taken “wrong”. Where is the trust and the true helping hand?

My dad told me a story about the time I was going out on my own to find a place to live. He told of a man searching for a place to relocate his family. He stopped a man on the street and asked, “What type of town is this? The man said, “What kind of a town did you come from?” The man replied, “The people were terrible, They were greedy, mean and unfriendly. The man then said, “That’s what they are like here too.” The man moved on. Soon another man came to the town looking for a place to move his family. He happened upon the same man on the street and asked, “What kind of a town is this?” Again the other man asked, “What type of town did you come from?” His reply. “Oh, the people were kind, helpful loving people.” The man said, “That’s the type of people you will find here.”

You make the difference! And the only way I can say it, as a Christian, is “Merry Christmas and a Prosperous New Year” to each of you.

Message by the Founder Annita

Brought toby Charcot Awareness Education Foundation

Communicating Charcot Foot Facts is a Challenge

Communicating Charcot Foot Facts is a Challenge 11/06/2014

I am sitting here feeling really frustrated as over the year I have read many articles about diabetes, yet they don’t mention Charcot foot deformity. I finally found a newspaper reporter in Nebraska that was interested in my story. While back in Nebraska, I contacted her. I wanted her to interview Bonnie whose story has been on this website for quite some time now and lives in the area. I was excited about her interest.

We met and visited, getting to know each other. She interviewed me with the understanding, I thought, that the focus would be on Bonnie as she lives in the valley. We then scheduled an interview with Bonnie at her home.

Bonnie's New CROW Boot

Bonnie’s New CROW Boot

I wanted to film the interview, but was discouraged from doing so. I wanted you, my readers, to hear and see what she had to say. The staff reporter had access to Bonnie’s story, as well as mine, so I didn’t question the fact she asked only a few questions to clarify some points and spent much of her time telling us about herself.

After she left, we were concerned about what she was going to write. But figured at least we had gotten some coverage for the Charcot Awareness Education Foundation and this devastating disease. Only to learn when it came out, the headline read: Foundation brings awareness to uncommon diabetic disease. This was up setting as there are 24 diseases that make Charcot worse. Diabetes only heads the list. Charcot Awareness Education Foundation has always wanted to prevent amputation. I was fortunate in that my Charcot was diagnosed soon enough that I could undergo surgery and save my feet from amputation. Bonnie, however, wasn’t so fortunate. Recently, Loyola University stated 4,000,000 diabetics in the USA are impacted by and will loose their feet to amputation.

Uncommon? Diabetic Disease? I don’t think so. The headline is missleading. One study says there are 16,000,000 million diabetics another 25,000,000 diabetics in the US. That comes to 25% or 6.75% of the diabetic population has Charcot, so I believe that is a serious problem and not that uncommon. Also, Diabetes does NOT cause Charcot. It makes it worse. Not to mention all people with the 24 other diseases and Cortico Steroid use that affect Charcot.

There were many problems with the write up, but I will only deal with a couple more in this article. The reporter contacted a local podiatrist who has avoided me for several years. He stated”…the leg is red hot and swollen.” Neither Bonnie, nor I, nor any other person with Charcot that I have spoken with has had a red hot swollen leg.

Hardware in Annita's right foot

Hardware in Annita’s right foot

It is hard enough to talk about Charcot Foot deformity with people, but to find the medical profession is not fully prepared to deal with it is something else. Because of this website and our brochure we have been in contact with many people. We have had over 1,500,000 visitors to date. We appreciate the emails that thank us for being here. Most of all, I personally, appreciate all those who have and are keeping us informed about their personal experiences with Charcot Foot, both sad and positive. Hopefully, in 2015, I will be able to bring you some new stories as I have several who are now willing to share their experiences with you.

Annita’s message concerning Diabetic Charcot Foot

Brought to you by Charcot Awareness Education Foundation

A Gift Of Healing

When one looks back over the years, you think about those things that impacted your life, several things come to my mind. In 2007 after surgery during my first visit with Dr. Roukis, I remember his turning to my husband, Max, and say “Do you smoke?” Of course the answer was yes. Max had smoked most of his life. When he retired from the Navy, he was smoking four packs a day. He decided then we probably couldn’t afford that much of an expense and decided to switch to the pipe.

I was glad he did that, but I really wanted him to quit completely. I chose not to bug him about it, however. He did choose to smoke some really good smelling tobacco and it never ceased to amaze me how many women told him how nice it smelled and asked what it was. I always felt this was encouraging him to continue to smoke.

Dr. Roukis went on to say he really didn’t care if he smoked. “BUT you won’t smoke around her!” he said. We were both quite surprised and wanted to know why? He was very clear about the fact that I was a diabetic and diabetics don’t have a good history of healing well, or quickly. He said the smoke makes it even harder for one to heal. If Max chose to smoke, he could do it outside and away form me, but not around me at all. Max agreed to do that.

However, on our way home he lit the pipe as soon as the traffic grew heavy. After some time, I realized that when he drove he was stressed the smoking began. What was bad about that, was the fact, I sat behind him. Even though, he usually had the window open, the smoke found its way to me. He really tried his best, but it was really hard for him. When at home it wasn’t too bad. He didn’t smoke in the studio at all. He did smoke while he worked on his computer and outside.

On our next trip, 2008, to the farm in Nebraska, he was realizing it was harder to breathe at the higher altitude. He began to smoke less. Since, we were living in the RV, he had to go outside to smoke. He decided he would quit smoking all together. Once home, he did just that. He said this was easier than quitting cigarettes. He used cinnamon disk candy to help him quit. He did gain some weight which he has started to loose now. We also try to exercise four or five days a week. He works in the gym and I exercise in the deep water pool.Max in chair

Unfortunately, the smoking did damage after all those years and he is now on oxygen at night and during the day as necessary.

My healing went well. It was even a bit ahead of schedule. I am very thankful for Max’s commitment and stopping smoking, as I believe we will have many more years together. Hopefully, we will be able to help others conquer their fears and fill some of their dreams. His gift to me, though not a lavish one, certainly holds a great deal more than money can buy. It was sent from the heart with love.

May the meaning of this Holiday Season take away the silent shadows in your world.

Brought to you by Charcot Awareness Education Foundation