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Give Of Your Time, Talent and Treasure

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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

Observe, Understand, Be Proactive

A friend of mine said she didn’t understand how her sister ended up with bloody blisters on her feet and didn’t feel them. Have you ever had the doctor check the sensation of your feet with a small monofilament line? Did he explain the test, or results, or the reason for the test? Mine may have, but it didn’t mean anything to me. I left feeling that everything was normal. It wasn’t. Like many with Neuropathy you don’t feel the pain, temperature (sensation) or trauma. So you really need to be proactive with your foot care.

The bloody blister thing happened to me. I didn’t feel anything either. We were in Vegas. It was incredibly hot. I was wearing socks in sandals. We decided to walk to he Mall and back to the RV. When I stepped up in to the RV, I looked down at my foot. It was bloody, so was the other one. Once inside, my husband helped me remove the sandal and socks to reveal bloody blisters. We carefully bathed and cleaned them. Did I go the doctor? No. Instead, we relied on some home remedies our parents used on us as kids and continued our trip. Healing went fine. Later upon reflection and after I was diagnosed with diabetes, I realized that this was a sign. I just didn’t know what it meant.

Keep your feet healthy. That means you do need to check your feet daily. Pay attention to the fact you may have stepped on something and check. Keep them clean and free from ulcers, calluses and infection. If you need medication to control blood sugar, or other conditions, take it correctly. Get regular check ups so your healing is at its maximum. If you have Charcot Foot, having a healthy foot is extremely important because that means you will be able to keep the foot and not likely have it amputated. It may mean orthotics, custom shoes, other type of bracing, but you will be able to walk.

Seek out a support group if you have diabetes, or look for others who may have Charcot. Keep in contact with them by phone, or meet with the organized group, or meet once a month for lunch, or breakfast as a social, or share happenings in your life. You could even see a movie together, go the local theatre for a play, concert, or musical. Stay active. Share your experiences, whether travels, things you’ve read, or your Charcot situation. Education helps one learn. This will improve your life, as well as, that of others. I have found seven people here in our small community that have Charcot just through observation and asking a few non-evasive questions. Don’t be a hermit, or shy, or be in denial. Talk to them show you are interested.

Even if walking is limited, you can maintain your independence and quality of life. Remember your feet are your foundation.

Please donate to help inform the public about the damage this disease causes. Funding can be sent 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

Facing Amputation

Look around you when out in public. I find there are more amputees out and about, or maybe I am more aware of this population after I was told I would be one if I didn’t have the surgery. I am so impressed with those I have met that choose to lead very normal lives, even those that are wheel chair bound.

While heading to the grocery store from the parking lot, a tall slender man walked quickly past me. When I looked down I was surprised to see he was a double amputee. You would not have known if he hadn’t had shorts on. While at the acupuncturist with my husband, a young girl in her 20’s literally came running down the long stairs. She, too, was a amputee. I stopped her to find out what had happened. She told me she was in a shipyard accident and her leg was crushed and couldn’t be saved. She was very positive and was planning on running in a marathon this summer. I have seen children, as amputees, who probably adapt better than any of us. They seem to carry on as if nothing was different.

To me attitude is everything. Bonnie is one of those people. She is positive, a role model for others and is busy in her community. Sure she could have stayed home and felt sorry for herself, but she didn’t. That’s why I want you to hear her story. If you are following her story, you know she has had more that her fair share of set backs during this discovery of Charcot, amputation and hospital stay. She was merely told if they couldn’t save the foot they would amputate during surgery.

I wondered how I would take the news. I know my surgeon told me he would make sure his patient understood the consequences and expectations. In doing research on amputation, I often find researchers say that if a part of our body is lost, amputated, we experience the grieving process much like death. Dr. Elizabeth Kubler-Ross in her book on Death and Dying outlines five stages of the grieving process. Omal Bani Saberi, LCSW, CCHT has put these in context of limb loss as follows.

1. Denial and Isolation. “This is impossible. It’s not really happening! I feel nothing at all.”
2. Anger. ‘Why is this happening to me? I’m enraged! God is unjust.”
3. Bargaining. “If I promise to do such and such, maybe I’ll get my old life back.”
4. Depression. “I feel hopeless. Everything is beyond my control. Why bother trying? I give up.”
5. Acceptance. “I don’t like it, but the amputation is a reality. I’ll find ways to make the best of it and go on.”

There are many factors including those prior to the event. How well do, or did you handle problems? Your support group of family , or friends, cultural values and norms and of course socioeconomic factors in.

Bonnie had so many things going on, I think she went quickly to step 5. I am sure she spent only a short time on the other four.

Remember there are 225 amputations of diabetic feet or legs each day in the USA.

Annita Shaw, founder

Brought to you by Charcot Awareness Education Foundation

Depression

Bonnie commented on the dark days of Alaska in the fall and winter while she was trying to heal her Charcot Foot. Later she talks of not remembering some things and how depressed she was. She really enjoyed the sun. Both of us having grown up in Nebraska, I could understand her feelings. In looking back on my recovery from Charcot Foot surgery, we chose to have the surgery during the summer as I felt that was better for me. Bonnie, as well as, many others have no choice. Many of our friends felt we would be better off having the surgery during the fall. With recovery during fall and winter because you can’t do a lot because of the weather. I wasn’t thinking about depression, but the fact that the weather would be warmer. We could leave doors to my studio open if I wanted. I didn’t have to think about Max driving to doctors appointments on icy roads, or my being pushed in a wheel chair either. I just knew I would be happier being able to look outside and be able to go out doors if I wanted.

Mid February of 2011, I discovered an article on depression in the Star-Herald from Scottsbluff, NE written by Nicole Vidlak, a licensed clinical psychologist and contributing writer. Her focus was primarily on heart disease. She referenced Johns Hopkins University in Baltimore, MD. She listed nine physical effects which I have blocked out here for you to read.
Depression notes

It was mentioned that individuals who are depressed may have difficulty taking some medications they need for their treatment. It seems Chronically-elevated levels of stress hormones common in depression can have negative effects. One who seeks mental health treatment for depression can make a positive impact on their over all health.

Upon further research we discovered a power point presentation by Terrence Sheehan, MD Chief Medical officer and Director of Amputee Rehabilitation Program at Adventist Rehabilitation Hospital in Rockville, Maryland. Though his topic was Physical Issues Following Limb Loss: Adapting in the Context of a Natural Disaster. It had some statistics and information very relevant to anyone and especially someone with diabetes.

These are really eye opening. Depressing? Statisticsurgent care and end up having my foot amputated.

At one of my podiatrist appointment, he commented he hadn’t had any new Charcot
patients and was kinda surprised. His nurse, however, may have hit on the answer. She said most go to emergency, or urgent care because of a broken bone or a veryserious condition only ending up having the limb amputated because they went for help too late. If they had gone to a podiatrist when they first had foot problems and had been diagnosed correctly, they, probably, could have avoided amputation.

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.

Brought to you by Charcot Awareness Education Foundation

My Charcot Surgery

July 5th came and we headed to McChord Air Force Base (AFB). Max drove the RV and I followed in our van. It was a pretty day. We settled in and relaxed as we really didn’t know what was ahead of us.

July 6th, I checked into the hospital at 6 AM. Once through OR Reception and dressing for surgery I went into OR Patient Holding. Max was with me, along with the student intern, the assistant surgeon, who signed my leg for surgery, and a National Guard Reserve who put in my IV. She said, “I’m going to give you a little something to help you relax”. I went out like a light. That was about 7:30 AM. I didn’t wake until about 4:30 PM in my hospital room.

The only thing I remember from the surgery was waking up wondering why they were working in my mouth. Thinking they were supposed to be working on my foot, not my mouth. I learned, later, that I started vomiting, apparently because of the anesthesia.

My surgeon allowed me to document this entire process with Charcot Foot. We have shared photos. He shared many of the surgical photos with me. I will share some of those with you now. Remember each surgery will be different and these are from mine.

The first photo shows where they put in two rods, one from the little toe toward the heel and one from the big toe to the heel. The x-ray shows the rods
1 Surgery

They also used artificial bone in three areas. The pictures show the chisel being used and the fact that two people worked to add the artificial bone.
2 Surgery

They lengthened the Achilles tendon. No actual picture of this, butSurgery 3you might be able to see the area on the back of the leg in the picture of the leg and foot in the orbital fixator. There is a picture of the x-ray showing the rods ,staples and what I call the hinge that allows the foot to move up and down, but restricts movement in a rotational sense. Since my toes tended to straighten when they raised the arch, they decided to work on the toes when they remove the Orbital Fixator.

Brought to you by Charcot Awareness Education Foundation

Who Might Have Charcot?

There are some 24 diseases that cause Charcot Foot to become more distructive. The following list of diseases by Ali Nawaz Khan MBBS Riyadh, Saudi Arabia appeared in an article in emedicine on Feb. 21, 2007.

* Diabetes
* Use of Corticosteriods
* Alcoholism
* Trauma
* Infection
* Amyloidosis
* Prenicious anemia
* Syphilis
* Syringomyelia
* Spina Bifida
* Myelomeningocele
* Leprosy
* Multiple Sclerosis
* Congenital vascular disease
* Charcot-Marie-Tooth disease
* Cord compression
* Asymbolia
* Connective disorders, such as rheumatoid arthritis and sclerodema
* Ehlers-Danlos syndrome
* Raynaud disease
* Adrenal Hypercorticism
* Thalidomide Embryopathy (congenital Arthropathy in offspring of exposed mothers)
* Paraneoplastic sensory neuropathy
* Cauda Equine Lipoma

Since diabetes heads the list, diabetics need to be aware that this article says 15% of the diabetic population has Charcot Foot and a 2004 University of Washington study states that 1/600-700 diabetics with diabetes mellitus neuropathy has Charcot Foot.

Charcot is, apparently, difficult to diagnose and is very often miss diagnosed as arthritis. One needs to find a Charcot knowledgeable professional. A podiatrist DPM, or a foot and ankle specialist (surgeon) DPM, FACFAS who is able to diagnose correctly.

Since neuropathy is a loss of sensation in the foot, one is unable to detect painful sensations. A doctor once told me a patient came into her office unable to remove his shoe and couldn’t understand why. When she looked at the bottom of the shoe she found a nail. It had gone through the shoe and well into his foot. It was removed and the shoe taken off to reveal a traumatic situation. Because of Neuropathy much goes undetected that could save the foot and individual from pain.

If you don’t have someone to help you check your feet, place a mirror on the floor that can be used to check your feet daily. Also, avoid going bare foot.

Brought to you by Charcot Awareness Education Foundation

Fitting The Prothesis

Second week of April 2004, my orthopedic doctor, Dr. Chung, advised me I that my left foot stump was healed and ready for prosthesis fitting. He was sending Trevor Munger to do the fitting.

That afternoon, I met another miracle person. He would be a big influence on my healing, mentally and physically and, as far as I am concerned, a friend for a lifetime. This young man (early thirties at the time) with the biggest smile, a bucket and paraphernalia in one hand (left) as his right hand/arm was amputated below the right shoulder. I probably thought, “How is he going to accomplish fitting me for a foot prosthesis.”

Trevor said, “Hello! Are you ready to start the next phase of recovery. ” Still smiling. I said, “Yes, I think so.” I was still hesitant in believing he could do this. He said, “Before we get started let me tell you my story.”

Trevor was born with the right arm not being developed. He became a very active young man. His family encouraged him in all aspects of his life. His disability did not stop him from doing anything and everything he wanted to accomplish. In high school in Kenai, Alaska he became a trophy winning football player and continued on to college to learn the art of making prosthesis. He is now the leading prosthesis maker in Alaska (That’s my opinion, but from what I have read and am told, it’s true.)

I was in awe of this young man. I figured YES. I can do this with God’s grace and help. Trevor explained that first he had to make a cast of my left leg/stump, then design a prosthesis. It would take several fittings before the final product was ready for me to use. That it would take adjustments at different times, as I became used to walking with a prosthesis.

I was in my wheelchair and Trevor sat on floor. Very handily he began the process of building the cast using both arms expertly. At the same time building my confidence of him and his ability to do his job.

I think it took about a week and one day before in he walked with the prosthesis and said let’s put this to good work. I wheeled myself into the exercise room that had the bars to hold onto as I had learned to stand and eventually walk there. What a strange wonderful and scary sensation, putting on the prosthesis and standing on both feet for maybe 10 seconds before setting down.

Trevor told me,”You gotta go easy. Make sure there are no breakdowns in skin, that no sores or blisters start because of rubbing from ill fitting prosthesis.” I was on cloud nine and very happy, but lots of work yet to build up the stump and rest of my body. By the end of second week in therapy I was getting very proficient at dressing myself, using the slide board to transfer from bed ,wheelchair and exercise mat. So onto bigger and better things, learning how to shower, do kitchen jobs and getting into the car (They had an actual small car in the rehab area.) using the slide board. I was feeling pretty smart by then and knowing the lord was with me every step of the way. I was continually praying for guidance and giving him all the praise and glory for my accomplishments.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Sharon’s Surprise & My Continuing Rehabilitation

Second week of April 2004, my orthopedic doctor, Dr. Chung, advised me I that my left foot stump was healed and ready for prosthesis fitting. He was sending Trevor Munger to do the fitting.

That afternoon, I met another miracle person. He would be a big influence on my healing, mentally and physically and, as far as I am concerned, a friend for a lifetime. This young man (early thirties at the time) with the biggest smile, a bucket and paraphernalia in one hand (left) as his right hand/arm was amputated below the right shoulder. I probably thought, “How is he going to accomplish fitting me for a foot prosthesis.”

Trevor said, “Hello! Are you ready to start the next phase of recovery. ” Still smiling. I said, “Yes, I think so.” I was still hesitant in believing he could do this. He said, “Before we get started let me tell you my story.”

Trevor was born with the right arm not being developed. He became a very active young man. His family encouraged him in all aspects of his life. His disability did not stop him from doing anything and everything he wanted to accomplish. In high school in Kenai, Alaska he became a trophy winning football player and continued on to college to learn the art of making prosthesis. He is now the leading prosthesis maker in Alaska (That’s my opinion, but from what I have read and am told, it’s true.)

I was in awe of this young man. I figured YES. I can do this with God’s grace and help. Trevor explained that first he had to make a cast of my left leg/stump, then design a prosthesis. It would take several fittings before the final product was ready for me to use. That it would take adjustments at different times, as I became used to walking with a prosthesis.

I was in my wheelchair and Trevor sat on floor. Very handily he began the process of building the cast using both arms expertly. At the same time building my confidence of him and his ability to do his job.

I think it took about a week and one day before in he walked with the prosthesis and said let’s put this to good work. I wheeled myself into the exercise room that had the bars to hold onto as I had learned to stand and eventually walk there. What a strange wonderful and scary sensation, putting on the prosthesis and standing on both feet for maybe 10 seconds before setting down.

Trevor told me,”You gotta go easy. Make sure there are no breakdowns in skin, that no sores or blisters start because of rubbing from ill fitting prosthesis.” I was on cloud nine and very happy, but lots of work yet to build up the stump and rest of my body. By the end of second week in therapy I was getting very proficient at dressing myself, using the slide board to transfer from bed ,wheelchair and exercise mat. So onto bigger and better things, learning how to shower, do kitchen jobs and getting into the car (They had an actual small car in the rehab area.) using the slide board. I was feeling pretty smart by then and knowing the lord was with me every step of the way. I was continually praying for guidance and giving him all the praise and glory for my accomplishments.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Kidney Failure: The Rest Of The Story

Because of kidney failure, being in ICU, my muscles, and the ability to even set up in bed was not easy. I was placed in the wheelchair with a lift. When I would try to set up, I would get so dizzy. I would almost faint, or get sick to my stomach. So I had to use a “Hoyer Lift”. They lifted me out of the wheelchair to get my weight each time before dialysis. And also, how I was placed in the chair for dialysis. It was neither a pretty picture nor self-esteem builder, but a day to day task.

Rehab at the assisted living place was slow. They took me to a king-sized bed to practice sitting up. Quite a few days was just repeatedly stretching, sitting up from a laying position and to remain sitting up for 5 minutes at a time. It took awhile. Eventually, I got to 15 minutes at a time. Then I progressed to learn to use a “Slide Board”. It was used for moving from a sitting position on the bed, to wheelchair and back to bed. (had not been fitted for prosthesis yet).

First part of March, my breathing/oxygen levels were not good. So, I was on oxygen quite a bit. I did breathing exercises each day also. That was pretty much the extent of rehab that month in between going to dialysis 3 days a week for 4 hours each trip, which were very cold and bumpy. The last 10 days of March was my getting sicker every day again. Low and behold pneumonia struck again and back to Providence Hospital for care.

It was a very rough 10 days, but the GREATEST WAS PRAYER ANSWERED IN THAT TIME – MY KIDNEYS CAME BACK – WHAT A GLORIOUS DAY THAT WAS AND MANY TEARS AND PRAYERS OF THANKS TO THE LORD!! Believe me I fought hard every day to get stronger and continued “The Serenity Prayer continually”.

During this month of March, I also had my most embarrassing moment- hilarious (in a way). Probably bout the 10th of March, a male nurse shows up early in the morning and says “Good morning Bonnie – I have been assigned to give you your first shower (all this time 3 months were bed type baths), but if you would prefer a female nurse just let me know.” I thought about it a moment and started laughing. And I said, “You are a professional person. Part of your job is bathing males/females and at this point everyone/everybody in this place has seen me from one end to the other and giving me a shower isn’t going to change how I look. So, lets get it done.” There you have it -my most embarrassing/hilarious moment. The nurse laughed to and we got it completed.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation