Archive for the ‘Message from the Founder’ Category

Over 25 Diseases Make Charcot Worse

I often am asked,” What makes Charcot worse?” There are at least 24 diseases that cause Charcot to become worse and most recently I came across a gentleman that told me he was diagnosed with Restless Leg Syndrome and has Charcot.

I asked a specialist on steroids why Corticosteriod use was number two on my list of things that make Charcot worse? He said, “because it depletes calcium in ones system, thus weakening the bones”. My husband has COPD and Corticosteroids are used a lot with this condition.

Diabetes heads the list that causes Charcot to become worse. I often spend much of my time with it as I am also a diabetic. Now that the Diabetic association calls the foot deformity problem “Diabetic (Charcot) Foot.” This is quite a change after talking with them the first time when they asked me, “Who manufactured Charcot”.

The following list of diseases by Ali Nawaz Khan MBBS Riyadh, Saudi Arabia appeared in an article in e-medicine on Feb. 21, 2007. I added and Corticosteroid use and Restless Leg Syndrome.

  • Diabetes
  • Use of corticosteroids
  • Alcoholism
  • Trauma
  • Infection
  • Amyloidosis
  • Prenicious anemia
  • Syphilis
  • Syringomyelia
  • Spina bifida
  • Myelomeningocele
  • Leprosy
  • Multiple scierosis
  • Congenital vascular disease
  • Charcot-Marie-Tooth disease
  • Cord compression
  • Asymbolia
  • Connective disorders, such as rehumatoid arthritis and sclerodema
  • Ehlers-Danlos syndrome
  • Raynaud disease
  • Adrenal hypercorticism
  • Thalidomide embryopathy (congenital arthropathy in offspring of exposed mothers)
  • Paraneoplastic sensory neuropathy
  • Cauda equina lipoma
  • Restless Leg sSyndrome
  • Since diabetes heads the list, diabetics need to be aware that this article says15% 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. Layolia University now says 4 million diabetics in the US have Charcot and will lose their feet to amputation because they will be misdiagnosed or not diagnosed in time to save their feet. A retired Diabetic nurse educator told me, “anyone with peripheral neuropathy long term, 10 years or more will have Charcot Foot Deformity. Their care, observation skills, and their willingness to seek Knowledgeable medical help, will determine whether or not they will be an amputee.”

    Charcot is, apparently, difficult to diagnose and is 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, one is unable to detect pain or its source. 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. Pain is a warning sign, but those with neuropathy don’t get the message.

    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.

    Message by the Founder Annita Shaw

    Brought toby Charcot Awareness Education Foundation

Diabetic (Charcot) Foot

It is only recently that I have read articles from the Diabetic association that refers to Diabetic (Charcot) Foot. My concern for anyone that has Charcot is the fact that if they aren’t aware an amputation will be in their future, but this can be avoided. The person must be very aware of the condition of their foot, its health, if it is changing shape in any way. Can they feel something if they step on it? No, this is neuropathy and many with neuropathy don’t realize they can’t feel. Also one foot is usually warmer to the touch than the other.

Lack of awareness and misdiagnosis are the two main reasons Charcot goes untreated.

Without treatment, Charcot can take away many of the basic functions of life: the ability to care for one’s self and family, hold a job and earn a living, exercise, and even live without pain.

Sadly, many people in general, and medical professionals will say this is not a life threatening disease. Yet, only within the past two years, one gentleman died because he underwent Charcot surgery more than once. Why? The doctors were not adequately prepared or trained to conduct this complicated surgery. They didn’t adequately prepare the patient to care for himself once home. Another was a woman who had a Charccot amputation, because of depression wouldn’t leave her home, spent much of her time on the couch, wouldn’t get dressed or answer the phone or door. She was found dead on the couch. Most recently a 60 year old man went to the hospital, had his foot amputated and lived only a few days after surgery. Yet had Charcot been discovered at an early stage, surgery could have been performed and recovery could have been only six weeks. They could have all walked again and lead a normal productive life with family and friends.

Hardware in Annita's right foot

Hardware in Annita’s right foot

How can I say this? I have Charcot and was fortunate to have had a young very knowledgeable surgeon who well prepared me for Charcot surgery. My right foot was in the last stage prior to amputation. He was able to save my foot from amputation. This was nearly a year of recovery much of it non weight bearing and in a wheel chair. My left foot also had Charcot but was in the very early stages. He preformed minor surgery (in my opinion) and recovery was six weeks and I was walking. Most who know me find it hard to believe as I had so much difficulty walking and now walk quite normally.

Message from Annita Shaw Founder

Brought to you by Charcot Awareness Education Foundation

Challenge: Communicating Charcot Foot Facts

I am sitting here feeling really frustrated as over the years I have read many articles about diabetes, yet they never mention Charcot foot deformity. I finally found a newspaper reporter in Nebraska that was interested in my story. While there, I contacted her. 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, a Charcot amputee whose story has been on this website and lives in the area. 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 from the website, 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 plus 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, I learned peripheral neuropathy ( the inability to feel or sense…temperature, pain or trauma) causes Diabetic (Charcot) Foot, impacting over 10 million diabetics in the USA. Have you or do you know of someone who has diabetes and has had an amputation of a toe, a fore foot, or BK Cut? There is a really good chance they had and were not diagnosed correctly and could have avoided an amputation.

Uncommon? Diabetic Disease? I don’t think so. The headline is misleading. 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 Corticosteroid 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, foot maybe. these can be warning signs but not all instances are the same.

Hardware in Annita's right foot

Hardware in Annita’s right foot

Hardware in Annita’s right foot[/caption]Foot, yes.

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 millions visitors to date. We appreciate the emails, letters and phone calls along with donations 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 2017, 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

CHARCOT INDIVIDUAL IN A WHEELCHAIR

After learning that my right foot was already infected with Charcot, my biggest goal was to do everything I could to keep it. This meant always wearing the crow boot to protect it and to keep it formed correctly. I found, quickly, that the more I used my walker for walking it would cause my right foot to ache, so I learned to maneuver my manual wheel chair very good. In one of my previous articles I mentioned the summer of 2004 “I HAD TO LEARN HOW TO BE AN INDIVIDUAL IN A WHEEL CHAIR”, I have been asked to explain that statement. Actually it is a whole lot of things all combined.
First: I needed to learn how to accept help graciously and just say “THANK YOU”. When you go from being a person who is in control of each and every movement you make, it takes a while to change your minds actions. Thinking I can still take care of myself in every way (not true). Do not argue with yourself and accept the person’s help. Accept graciously and know in your heart you will be able to help someone else in return at some time.

Second: Learn to be patient with yourself and others in all things that you do. My main mode of travel in Anchorage for two years was with Tony, Sharon or Bonnie J. Which was no problem, they were catering to me totally. When I moved to Nebraska I discovered the “HANDY BUS” (county/state operated) for a very minimal fee you can go places within the county. I use it for doctor appointments, grocery shopping and daytime entertainment (Senior Center for lunch and playing cards). Since so many people use this mode of transportation, you do have waiting periods, which can get lengthy. Quick remedy, take a book to read, or puzzles to work, or my favorite, people watch and strike up a conversation. This makes me feel independent and making my own plans, also understanding the movements / chores you will attempt take time – don’t get frustrated because it takes you longer.

Third: Planning your day/movements safely so that you have no mishaps, such as falling. No more spur of the moments to jump up to go get something in the other part of home etc.

Fourth: Self Confidence. When I first arrived in Nebraska, I was feeling very vulnerable. I felt I needed someone with, or around me before I could do anything. I didn’t trust my own abilities. I was staying in a local motel in a handicap room until I could find a permanent home, probably an apartment or assisted living place. My sister Cindy became my instant helper (God Bless her). She would come over to take my dog, Tuk, out. She would stay with me in my room while I showered in case I would fall. Remember my home in Anchorage was 3 stories. Lots of stairs. Well, with in a month, or less I could take Tuk out myself, go for walks with the wheel chair, with Tuk along side. Soon discovered, I was very safe and could maneuver well enough that I could do my showers without having Cindy there.

Fifth: Faith in God – None of the previous things can happen without Faith & Trust in God and thanking him many times during the day for the ability to do everything you must.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought to you by Charcot Awareness Education Foundation

Kidney Dialysis and Pneumonia

January 2004, the diabetic doctor told me that Charcot was rare and not mentioned much in medical school. That’s why it was missed. The type of surgery performed was just taking the foot to the ankle as it was not infected. This was, sort of, a rare surgery for Charcot, but new procedure. The physician said I was a good candidate.

Though the surgery was a success and was healing well, I developed what was determined as gout. I was allergic to the prescribed med. Vioxx. This was like 4-5 days after surgery. Within 24 hours I started swelling up.

I wound up in ICU. After many tests it was determined my kidneys had failed. I was placed on continual dialysis for 5 days. After the five days, they had removed 100 Lbs. of fluid. I was still taking an antibiotic drip for eight hours, every 3 days to fight the MRSA. I was then transported by ambulance to their health care unit. My kidneys did not operate for eight weeks. So, I was placed on dialysis 3 times a week, 4 hours each session. Normally, it is a three hour session. They transported me to the Dialysis Facility (which had many, many machines) every Monday, Wednesday and Friday evening. The session began about 7 PM and it was normally midnight before getting back to the care center. This lasted, just, over four weeks.

During this process, I developed pneumonia. So in March, I was taken back to the hospital as this was my second bout with pneumonia. I was on oxygen for a few days each time and had to use the little breathing apparatus to clear my lungs and expand them. The surgeon had to place a port in my left side about three inches down from my shoulder so all meds were given to me went through it. They were constantly giving me something. After kidney failure another port was placed on the left side just to the right of the left breast so I could be hooked up to dialysis machine. I just about forgot, during the first bout with pneumonia, I was not eating, or would not eat and a tube was inserted through my nose to my stomach for the propose of feeding. I had that in from first part of February 2004 until end of February when I was moved to Providence Health care (Rehab and Senior Living housing)

Before Vioxx shut down my kidneys, I had been given an antidepressant. The doctor and nurses kept asking me questions after surgery. I thought I was doing OK, but they determined from my answers to their questions, and the fact that I was not eating, I was depressed. Again I really don’t remember much about the hospital and the pneumonia bouts. I really feel my poor body had been given so many drugs it revolted and said enough already.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation

NORTH TO ALASKA & Charcot Foot

NORTH TO ALASKA & Charcot Foot 05/26/2016

It is with great pleasure that I will be able to share Bonnie’s story with you over the next few weeks. Bonnie will share her experiences with Charcot Foot, how it changed her life and how she dealt with this devastating disease. It isn’t enough that Bonnie has to deal with Charcot Foot, but life becomes very complicated because of it and also because of news she and her husband, Tony receives.

I am proud to say Bonnie has joined the CAEF board of directors and is actively helping educate everyone about Charcot Foot Deformity.P7310525 copy

Before I start my story, I need to acknowledge several people who helped me tremendously to continue living and not become a recluse. My dear husband Tony, mentor/friend Sharon McKenzie, dear friend Bonnie Jackson ( met her after my first surgery ) and my extended family and friends, without them I would not be here today. The reason I mention these friends is because my immediate family lived in the lower 48, however I am living proof of the power of prayer for that was their gift to me, plus hundreds of cards and calls. I was raised in a Christian home and felt I was a Christian although had not been a practicing Christian since moving to Alaska in 1962. During this illness I renewed my faith and believe it is God’s will that I am able to have a very normal life.

I was born and raised on a western Nebraska panhandle farm. Being raised on a
Riding Diamondfarm, you normally have a few bumps and bruises etc. Well, I was fortunate, no broken bones, but falls from riding horses many times. No major illness or surgeries, just tonsils and appendix.

My teenage years were great (1950’s), I attended the same school from kindergarten through twelfth grade. Graduating in 1959. Good old Lyman, NE., a town of about seven hundred population. The school had about 300 pupils. My graduating class of 1959 was 16 students. You knew everyone. You were able to participate in so many school functions. There was a place for everyone in multiple activities church and school. I participated in band (playing the clarinet) in marching band (I was drum majorette), chorus, school plays, county government days. Outside of school, church youth leadership, Jobs Daughters (part of Masons). In my spare time (ha ha) worked on the farm with family. Never thought of this as a special lifestyle, but, oh how I do now.

B@11, Donna-QueenieAfter graduation, I worked in a nearby town, Morrill, NE. (pop 900), started as bookkeeper at a local Pontiac car sales, where my father always bought his new cars. A year later (1960) became a telephone receptionist at Chester B. Brown CO, now Kelley Bean CO. (a dry bean company) .

May 1961, married my high school sweetheart, Gary Foland, from Morrill. He was working in Denver, CO. at the time. We moved to Denver. In November of 1961, Gary joined the Air Force. I stayed in Denver working as a bank teller. In March of 1962, I followed Gary to Wichita Falls, Texas. In June of 1962, he was assigned to Elmendorf Air Force Base, Anchorage Alaska. I stayed in Morrill until Gary could find an apartment for us. By August of 1962, I had prepared a pickup truck (which Gary had purchased and built a camper for carrying our belongings). My brother Jerry (age 18) and I drove from Morrill, NE to Seattle, WA. (Oh, yes, my little Pug, TyeTye, was with us). Quite an experience for two farm kids. Believe me, God was with us all the way. Brother Jerry returned to Denver on his first airplane ride and I flew on my first plane ride from Seattle to Anchorage, with dog in tow.

Bonnie a personal friend will be sharing her story over the next several weeks.

This post was written by Bonnie Ribitzki a Charcot Amputee and friend from Gering Nebraska

Brought to you by Charcot Awareness Education Foundation

Bracing the Charcot Foot

In reading some of the information and learning about surgery on the Charcot Foot I am surprised I qualified for the surgery. It was done on both of my feet. The Right foot was reconstructive surgery. We actually prepared for it for nearly 2 ½ years and I had about two years of full recovery though I began light weight bearing after 6 months. The Left foot had a day surgery, including lengthening the tight Achilles tendon. Both were very successful. Most people are amazed that I walk normally even after 9 years.

I just ran across an article that was written by Alan Banks, DPM, FACFAS in March 2013. Podiatry Today
He discusses the fact that surgery isn’t for everyone with Charcot Foot and talks about various forms of bracing that works well for others.

Some patients had serious infection issues compromising their feet. Many surgeons would have considered their feet beyond salvage, thus requiring amputation, but were placed in a brace that ultimately saved their feet. He admits that many of the podiatrists have received little if any formal training relative to bracing. Through 30 years of experience, he has learned many of his patients have achieved enhanced function and mobility without surgery.

If the Charcot foot is inactive, then the patient will need to be immobile and non-weight bearing until the active inflammatory process has resolved. The foot should be stable, retain mobility and a stable range of motion. One that is unstable is hard to brace.

The diseased foot or neuropathic foot have shearing, bending and vertical load that disrupts its healing. One of the first steps is to accommodate with orthotics in the shoe, Clinicians also use the AFO easing shearing forces. I mentioned this last week. After Achilles tendon lengthening a post-op bracing may help protect the foot.

There are many different bracing options available. Each physician should help you find the bracing that works effectively for you. There is the Patellar tendon brace works well helping to reduce vertical load to the rear foot. The CROW (Charcot restraint orthotic walker) device is one you see quite often. It more closely reproduces the fit and function of a cast. It can have a rocker sole added to facilitate weight bearing. It is bulky and is sometimes hard to fit.

After an amputation of her left foot and

Bonnie with CROW boot and Prothesis making a fashion statement.

Bonnie with CROW boot and Prothesis making a fashion statement.

many complications, Bonnie learned she had Charcot in her right foot. Upset, she was finally convinced by her doctor she had many good years left in it if she would consider a CROW boot. She did. She now looks back on that time with humor saying she really made a fashion statement. Bonnie with CROW boot and Prothesis making a fashion statement. A prosthesis fawn color and a black CROW boot. That was 12 years ago. The CROW has kept her foot formed correctly and is presently doing well. Oh by the way, her latest CROW is white.

Dr. Banks concluded that he is now using a device known as the TORCH, “which is a true problem solver and patients and doctors appreciate the results.” The TORCH is made by American Orthopedics (Mount Vernon, NY)

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

AFO An Option For Charcot Foot

AFO An Option For Charcot Foot

I was a candidate for Charcot surgery which was very successful, but not everyone is a candidate for this type of surgery. Recently, I interviewed a man who had restless leg syndrome and was diagnosed with Charcot Foot Deformity. He had gone through bracing which worked very well. He said this was the first time in many years he had been able to walk without pain.

I then began to read through my emails and found a series of messages from a mom telling me about her seven year old daughter who had just been diagnosed with Charcot Foot. She said she had been diagnosed with some sort of genetic neuropathy. Her foot was so bad that if it continued to deteriorate at this rate she would have to have an amputation within two years. They put her in a cast and non weight bearing. While in school she was in a wheelchair. It was decided to have an AFO brace made so she could do some walking as the boot wasn’t sufficient. AFO stands for Ankle and Foot Orthoses. She was finally diagnosed with Autonomic Neuropathy. Her mom also stated that neuropathy was the cause of Charcot Foot. The neurology specialist gave her this information.Child's foot right side

In my work with a retired diabetic nurse educator, I learned that peripheral neuropathy was, in fact, the cause of Charcot Foot. We developed a Charcot Fact Sheet which has been received very well by the doctors who have seen it.

Unfortunately, Diabetes has taken the blame for Charcot Foot. People’s first response is “Well, I don’t have to worry about it. I don’t have Diabetes.” Neuropathy is strongly prevalent in Diabetes. Thus, it is the number one disease for Charcot, but not the only one. There are at least 30 other diseases that have neuropathy associated with them.

The seven year old is now four years older. Her situation is pretty stable. She continues to use the AFO brace and wheel chair when necessary. Her knees are at risk for Charcot also, so will be dealing with this the remainder of her life. She swims and stays positive. She has a wonderful supportive family which helps greatly in the healing process.

Next week I will continue with the AFO and information from a noted podiatrist.

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

Charcot Donors are Awesome!

Logo Thank you Card copy
Great Give Logo 2016 copy

May 3rd was the Big Day for Giving. As you already know we took part in the Kitsap Great Give. It was a successful time. There were some technical difficulties that hindered everyone for several hours so the deadline for giving was extended through the next day. Everyone was pretty patient. CAEF had quite a few new donors. Welcome! And thank you for becoming part of the Charcot team.

Since the April 28th posting things have already begun to happen that were only a dream then. In June we will be able to purchase a lap top computer for CAEF as we have been using the Shaw’s computers. This allows us to have everything related to CAEF in one place. A time saver and much more efficient. Then this past week we may have a lead on a publisher and we have also found an editor for the publication that will come from the Charcot patient’s point of view. We have also come to a fairly close cost related to diagnosing Charcot Foot.

Again Thanks for your Helping Hand.

Our next postings will again deal with Charcot and related information. If you have any questions or have a suggestion for a posting please let me know.

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

You Can Make A Difference

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Great Give Logo 2016 copy copy
How to donate

May 3rd is only a few days away and such an important day it is. CAEF is part of the Kitsap Great Give, a part of the National Day of Giving. It is really exciting as the sponsors have a pool of money where they will proportionally match any donation. Which means your donation is even larger,

Please join us as a partner and help meet our goals. We want to early diagnois Charcot Foot so an amputation won’t happen. Curriculum is currently being developed that will be used to educate the public, the patient at risk, the medical profession and anyone who works with people at risk.

Because of your donation last year, The Charcot Foot Deformity Fact Sheet on peripheral neuropathy was developed, now, highly regarded by the medical profession and informative for the public. Presentations were given to diabetic groups and took part in other events. Max and I are members of the local hospitals Patient Experience Council a part of the CHI Franciscan Health.

A local foundation once said they were looking for a “Helping hand and not a Handout.” We need your “Helping Hand”, and/or your expertise. Please join us in our mission to help people with peripheral neuropathy avoid Charcot Foot and amputation.

Thank you for your donation and helping to avoid amputation.

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