Charcot Foot Support

Living with Charcot Foot

The things we miss

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Living with Charcot Foot means living without quite a few other things. We all find ourselves lamenting the things we miss from time to time. Too much of that can send us into a depression or unless our anxiety. But on occasion it doesn’t hurt to acknowledge the loss of the life we used to live before Charcot Foot became a part of it.

We Miss Our Shoes

We miss our shoes, the adorable ballet flats and the warm Uggs. We even miss those steel toed work boots and cowboy boots and rain boots. We miss slippers and flip-flops. We miss the ease with which we would slip on those shoes before we had to wear AFO braces or the dreaded boot. Some of us miss our shoes so much we have kept a few pairs we will never wear again just because we can’t bear the thought of letting them all go.

We Miss Walking

We miss walking, with ease and without pain. We miss those strolls around the block with our dog or our children. We miss the idea of just getting up and walking to the mailbox without worrying about our braces or pain level. We miss the simplicity of a trip to the grocery store without being concerned about far we will have to walk once we are in the store.

We Miss Our Independence

We miss being able to do our own grocery shopping and preparing our own meals. We miss having the freedom to hop up and make a quick trip somewhere without having to plan things out. We miss taking a shower without concern about falling. There are times we want to scream because we are sick of asking others for help and want to be able to do it all on our own again.

We Miss Our Balance

We miss walking up stairs and not having to grip the handrail. We miss dancing, even though we might not have been good dancers. We miss feet that didn’t have rocker bottoms that leave us shaking and clumsy. We miss not stumbling when we walk or being able to stand up quickly without fear of tipping over.

We miss a lot when we live with Charcot Foot. Over time we learn how to accommodate for the lack of balance and challenges walking. We adjust to orthotics and inserts, boots and knee walkers. We learn to ask for help when needed and claim our independence in other areas. Eventually we are even able to let go of those last few pairs of shoes and embrace the sturdy, practical shoes that keep our feet protected. Even though we adapt we still have to acknowledge the things we miss.

Please, know you are not alone. We are all missing something, we are all grieving. We don’t have to do it alone.

Living with Charcot Foot: Jennifer’s Experience

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Everyone with Charcot Foot has a different experience but we can all learn something from one another. Today, Jennifer is sharing her experience of living with Charcot Foot. She was diagnosed with Charcot Foot on her 43rd birthday.

Charcot Foot Diagnosis

Jennifer had been experiencing neuropathy pain and numbness in her feet and legs for several years. She had also begun to have swelling in her feet. She and her doctor originally thought the swelling was a side effect of medication she was taking. She discontinued the medication but the swelling persisted. Just a week before her first fracture she hiked in the Catskills.

“I went hiking with this in the Catskills and didn’t know,” Jennifer said. “I knew I had an appointment with my endocrinologist in a week and thought I would bring it up to him.”

After returning from her trip she planned to see her doctor to discuss the continued swelling. Before she made it to the doctor for her appointment she fell on her stairs while taking her dogs out for a walk. X-rays showed she had a fractured left heel. At her three week follow up appointment the bone hadn’t begun to heel and she first heard the mention of Charcot Foot.

“I had the compression heal fracture and go back for the three week follow up and there is no healing and I thought that isn’t good,” Jennifer said. “And my podiatrist said I hope this isn’t Charcot.”

Not long after the first break she began to have problems with her right foot. Going non-weightbearing on her left foot put additional pressure on her right foot. It too began to fracture.

“For five weeks I went to work on crutches, drove my car, did everything,” Jennifer said. “Then on my birthday I went to work and to my doctor’s appointment and my right foot was very swollen and there was a bump in my arch. It was so swollen you couldn’t even tell it was the bone. I go for an x-ray and later that night he called me and told me to take the air cast off my left leg, put it on my right and get to an orthopedist. I didn’t even need him to say it, I knew from the way his voice sounded it was Charcot Foot.”

With both feet in the acute stage Jennifer had to go completely non-weightbearing for several months. She was eventually fitted for AFO braces on both legs which she wore for more than six months. She has now been able to transition back into tennis shoes with inserts.

Advocating for your medical care

Jennifer is a pro at advocating for her medical care, a skill she honed before her Charcot Foot diagnosis but one which has proven to be especially beneficial in dealing with Charcot. When originally diagnosed with Charcot Foot, Jennifer began meeting with a number of doctors, interviewing three before finding one she was comfortable with.

For her it was important to find a physician who was trained and competent in treating Charcot Foot. She wanted a doctor with a good bedside manner and one who wasn’t eager to do surgery. Once she found the right foot doctor she was able to develop a Charcot Foot treatment plan which worked for her.

Jennifer struggle with other health issues in conjunction with Charcot Foot. One way she continues to advocate for her medical care is by maintaining detailed records. Because she sees a number of physicians for different medical conditions she keeps copies of the records to quickly and easily share when she is at her various appointments. In regards to her Charcot Foot she always gets copies of her X-rays on a disc.

Some of her others tips for being a good advocate for yourself include:

  • Be the expert and learn everything you can about Charcot Foot or the condition you are being treated for.
  • Don’t rely on doctor’s to have all of the information. Remember you should know your body and condition best.
  • Don’t be afraid to ask for a second, or third or fourth opinion.
  • Ask questions, any and all questions.

Charcot Foot Treatment Options

One of the first doctors Jennifer met with recommended surgery during her first appointment. His quick desire to perform surgery left Jennifer concerned. She wanted to explore different Charcot Foot treatment options.

“He came in and I started asking him how much experience he had with Charcot and he didn’t really answer me,” Jennifer said. “He was very full of himself. I then asked him what are my options. He is now scheduling me for mid-foot fusion the next week. I was like, wait, you want to fuse my foot. First of all, I had all this swelling, fresh fractures, and my hemoglobin A1C was 10.6. He was going to cut into my diabetic foot with a 10.6.”

For her and many others with Charcot Foot surgery is not the right answer. There are many risks associated with surgery including additional injury, infection and amputation. At the end of the day surgery will not cure Charcot Foot so it was important to her to explore all the other options.

“These surgeries, fusions, external fixators, are only temporary fixes,” Jennifer says. “When you go into a surgery for the first time you need to know it is a very likely possibility it won’t work and all you are doing is now you are sitting longer and having to heal longer to only have more surgery. I feel like people think surgery is the answer to this and it’s not. I feel like people really need to understand surgery isn’t going to fix this. You aren’t going back to how you were before this happens. You still have Charcot.”

Jennifer did find a physician who was supportive of her and had a good understanding of Charcot Foot. Her physician recommended the following Charcot Foot treatment options.

  • Go non-weightbearing during the acute stage of her Charcot Foot
  • Wear AFO braces as prescribed
  • Wear custom inserts and appropriate shoes

Jennifer has been diligent with following her doctors orders. She says when she should be non-weightbearing, though it is difficult, she is completely compliant.

“When I’m non- weightbearing it’s non-negotiable,” Jennifer says. “If the doctor says to be non-weightbearing, I’m non-weightbearing.”

Moving forward

Currently, Jennifer’s feet are stable. She wore AFO braces for over six months and has now transitioned to tennis shoes with custom inserts. She isn’t naive and knows that it is likely she will have additional problems in the future. However, she tries to have fun and keep a sense of humor about the situation.

She has been able to go on vacation recently. Making visits to the pool and the beach have become a reality again. On St. Patrick’s Day she ventured out with friends for a pub crawl. She was nervous, as it was her first outing with braces, but says her friends checked in on her throughout the night to make sure she was doing okay.

“I am really lucky to have such a great support system,” Jennifer says.

Jennifer has mourned the loss of her beloved shoes. She now focuses her attention on enjoying fun socks and slippers. She recommends Happy Feet toe separator socks. They come in several colors and are fun but she says they also help tremendously with toe cramping.


With her feet currently stable Jennifer is enjoying the moment and taking the time to focus on some other health concerns. We appreciate her willingness to share her experiences with us. Jessie, Charlie and ""” rel=”noopener noreferrer”>Beth also have Charcot Foot experiences to share. If you would like to discuss your experiences with Charcot Foot contact us.

Why is this happening to me? Beth shares her experience with Charcot Foot

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Beth is a 46-year-old Type I Diabetic who was diagnosed with Charcot Foot in 2010. She is sharing her experiences living with Charcot Foot in hopes of helping others.

When Beth first heard the words, diabetic Charcot Foot, from her physician she was confused. She had actually heard about Charcot Foot years previously but never thought it would happen to her.

“Diabetic Charcot Foot, he actually said diabetic Charcot Foot and I couldn’t believe it,” Beth said. “I had a good A1C, I took care of myself, how was this happening and why was it happening to me.”

Beth was diagnosed with Type 1 Diabetes when she was only 18 months old. She reports in her early childhood her blood sugars were never controlled. Her home life was chaotic and her parents were unable to successfully manage her health needs. She was frequently hospitalized due to high blood sugar. It wasn’t until she was a teenager, when she was in control of her own health, that her blood sugar returned to a stable range.

She says she maintained her A1C consistently between 6.5 and 7.8 from the time she was 16 until she was in her early 30’s. At the age of 32, Beth experienced a significant trauma, her young son died in a tragic farm accident. The grief sent her into a spiral of depression.

“After Ben died I couldn’t function,” Beth says. “I was in such a deep depression and I couldn’t manage to get out of bed and shower most days, let alone take care of my diabetes. I spent close to two years with very high blood sugars while I tried to pull myself together.”

Eventually the grief and depression lifted, though still present, it wasn’t as intense and Beth was able to begin caring for herself again. Her blood sugars returned to normal and her A1C returned to 6.8. She was happy with the progress she had made and was even able to return to work for the first time since her son died. She was thrilled to return working as a nurse at her local hospital.

Not long after returning to work Beth experienced significant swelling in her feet. She said she thought it was due to working 12 hour shifts after a few years of laying in bed. But the swelling became intense and she noticed it was becoming harder to walk. Then one day she fell.

“I was walking back from the mailbox and went to step up on the curb and I just fell,” Beth says. “It was like my foot just gave out. It hurt but not bad. I got up and went back to the house and went about the rest of my day. That night I took of my shoe and was blown away.”

What Beth saw was a large bulge on the side of her foot. She knew instantly the bulge was from a broken bone. How had she broken her foot and not realized it? She was stumped. But she also knew from the color of her toes she needed medical care soon. Her toes were swollen and a blueish purple color.

At the hospital Beth underwent x-rays and her foot was in fact broken in several locations. She was referred to an orthopedic surgeon and met with him the next day. It was then she first heard the dreaded words, Diabetic Charcot Foot.

“I was angry when he told me,” Beth says. “I know there were periods of time that my blood sugars were high but overall I thought I was doing well. To find out I had this pissed me off. I knew what it meant for me and I wanted none of it.”

She wanted none of it but Charcot Foot was here to stay. Beth has now undergone two surgeries on her right foot and one surgery on her left foot. She has significant Charcot Foot deformity including the infamous “rocker bottom”.

“The Charcot Foot deformity has been rough,” Beth says. “My feet are so deformed it is almost impossible to walk. I haven’t been able to work as a nurse for the last five years. It still makes me sad and angry and I still wonder why this is happening to me.”

Beth does wear orthotics to help her walk which she says does help with the balance issues caused by the Charcot Foot deformity. She also regularly uses a knee scooter. She maintains her blood sugar at a healthy range and has experienced no other diabetic complications.

We thank Beth for being willing to share her experience on living with Charcot Foot. If you would like to share your experience please contact us. You can read about Jessie and Charlie’s experiences as well.

Charcot Foot Book Review

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Finding a book about Charcot Foot, written by someone living with Charcot Foot seemed impossible. That is until this week! This week, Jessie Wagoner, who we have featured previously, released an eBook, I Miss My Shoes: Living with Charcot Foot.

I Miss My Shoes: Living with Charcot Foot provides a personal view of Charcot Foot. Gone are the textbook descriptions and clinical approach usually found in writings about Charcot Foot. Rather, Jessie provides an easy to read, honest depiction of what living with Charcot Foot is like. She explores Charcot Foot misdiagnosis, adjusting to orthotics, managing the emotional toll Charcot Foot can take and highlights groups that have helped her find others to connect with.

One highlight of I Miss My Shoes: Living with Charcot Foot is the frequently asked question section. In this section, Jessie dives into the most common questions people have when first diagnosed with Charcot Foot. She tackles the hard question, “Am I going to lose my foot?” and the logical one, “I’m non weight bearing, how do I shower?” and everything else in between.

I Miss My Shoes: Living with Charcot Foot is a quick but helpful read for anyone living with Charcot Foot. Our only complaint is we want more. We are encouraging Jessie to write a full-length book on Charcot Foot and we hope this eBook is just the beginning.

We reached out to Jessie to visit with her about the eBook and get her thoughts. Below are our questions and her responses.

Q. I Miss My Shoes: Living with Charcot Foot released today. How are you feeling about the release so far?

A. I am thrilled about the release! I’ve been working on this for awhile and it’s nice to see the project come to fruition. As the day as progressed and copies have sold I’m reminded that with each publication about Charcot Foot we are educating people about this condition and hopefully increasing awareness.

Q. When you were diagnosed with Charcot Foot did you ever imagine you would one day be writing a book about it?

A. NO! When I was diagnosed with Charcot Foot I was devastated. Here I was, a single mom with a 10-year-old and a baby and I couldn’t walk! I was terrified and depressed. But time passed, and the more I looked for information about Charcot Foot the more I realized there needed to be publications written by people with Charcot Foot about Charcot Foot. Our stories and experiences need to be shared. Before I knew it, I was writing an eBook.

Q. We have had the opportunity to work with you in the past, so we know you have a wicked sense of humor. Can you share a funny Charcot Foot experience with our readers.

A. You know me well! Laughter is the best medicine and I’m always searching for the funny side of life and Charcot Foot. One particularly funny experience happened when I first returned to work after my diagnosis. I was three weeks post op, non weight bearing and using a knee scooter.

I rolled into work that morning like usual and worked through my lunch break, not leaving the office until the end of the day. As I was leaving I noticed white marks along the carpet by the front door. It looked like paint on the carpet. I thought to myself, “What asshole traipsed paint all over the carpet?” I was pretty annoyed some jerk would track paint all over the place.

As I rolled across the parking lot, still thinking about that jerk, I noticed something. The paint line continued across the parking lot but it was accompained by something else. One shoe print, over and over. It sunk in. The parking lot stripes had been painted that morning before I got to the office. I was the jerk tracking paint across the parking lot and carpet! My scooter wheel and one foot print was all the proof I needed. I really was the asshole!

Q. If you could only give one piece of advice to someone living with Charcot Foot, what would it be?

A. Take care of your mental health as well as your physical health! This condition can take you to some very dark places emotionally. Seek out help if you are struggling with depression, anxiety, PTSD, etc.

We thank Jessie for taking the time to answer our questions. We encourage you to buy a copy of I Miss My Shoes: Living with Charcot Foot.

Charcot Foot Stages

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Charcot Foot is a serious condition. It can lead to deformity, disability and amputation. The earlier Charcot Foot is diagnosed and treated the better outcomes a patient will experience. When Charcot Foot is diagnosed it is done so in one of three stages, acute, sub-acute and chronic.

Charcot Foot Acute Stage

When in an “acute stage” a patient will likely experience significant swelling, the foot will be warm to the touch and will likely be red. Frequently, misdiagnosis occurs during the acute stage as the symptoms are mistaken for signs of infection. During the acute stage, significant damage can be done to the bone structure of the foot. If x-rays are done during this stage they will likely show fractures and dislocations. 

During the acute stage of Charcot Foot patients are most likely placed in a boot or cast to immobilize the foot. They are also encouraged to remain non-weight bearing until the acute stage has passed.

Charcot Foot Sub-Acute Stage

The second stage, known as the “sub-Acute stage”, is characterized by healing. Patients will begin to see a decrease in swelling, redness will subside and the temperature of the foot will begin to return to normal. During this period the bones can still be damaged so it is important to remain non-weight bearing. 

Charcot Foot Chronic Stage

Stage three is known as the cool phase or the “chronic stage”. During this period the foot should have minimal swelling, no redness and be of normal temperature. X-rays performed during this stage will show consolidation of the bone. During this stage, patients are considered stable. The foot is not worsening in condition but will not improve. It is important to remember each stage can occur more than once and can occur at varying times in either foot.

Always talk with your physician if you have concerns about what Charcot Foot stage you are in. Only a doctor can make an official diagnosis.

The Five Best Knee Scooters for those with Charcot Foot

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When you have Charcot Foot or other foot problems you are likely to experience a period of time when you are non-weight bearing, meaning you can’t put any weight on your foot. This used to mean you were destined to use crutches or a wheelchair during non-weight bearing periods. Not anymore! Now there are a variety of knee scooters on the market to improve mobility while you stay off your feet.

So how do you choose the right knee scooter? There are so many different brands and styles on the market it is hard to know which one to pick. We have made a list of the five best knee scooters for those with Charcot Foot. We have tried and tested an assortment and these get our approval. While researching knee scooters we looked at durability, difficulty level for folding the scooter, price, tires and brakes. These are the five best knee scooters we have found!

KneeRover Steerable Knee Scooter

The KneeRover Steerable Knee Scooter is one of the best knee scooters on the market. It is affordable, easy to put together, sturdy and comes with a basket attachment. This scooter works well going up and down ramps and brakes gently. It is available for purchase in a variety of colors which is a nice option as well. This knee scooter does fold easily and can be stored in the backseat or trunk of a vehicle.

The OasisSpace All Terrain Knee Scooter

The OasisSpace All Terrain Knee Scooter is another favorite for us. The All Terrain Knee Scooter has air filled tires and is a bit sturdier than other scooters on the market. This scooter is great to use in the yard as it maneuvers well on rougher terrain. If you are sick of sticking to sidewalks, this is the scooter for you. If you have young children or grandchildren and are living with Charcot Foot it can be hard to keep up with them. This scooter allows you to easily maneuver around the yard so you can play outside with them. It also comes with a basket attachment, folding handle feature and adjustable seat.

 
 
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KneeRover GO Knee Walker

The KneeRover GO is the smallest, most compact knee walker we could find. It is lightweight and easy to fold and store. It would be the knee scooter to keep at the office, use for quick trips to the mall or airport, or putter around the house. We love the lightweight feel and agree it is easy to get in and out of the car and folds up small enough it can be stored easily.

Draw backs are that it does not come with a basket attachment. A basket can easily be added but will incur an additional expense. The other downside is this scooter doesn’t do well on rougher terrain. However, as long as you stay on smooth services this is a great knee walker!

ELENKER Steerable Knee Walker

The ELENKER Steerable Knee Walker is available at a great price. It’s one of the most affordable knee scooters we could find. In addition to being priced well it is surprisingly comfortable. The adjustable seat has a slight curve to pad the knee which prevented knee pain during extended use. It’s a nice feature we have found on only a few other models. It also comes with a basket attachment and folds.

KneeRover PRO

The Knee Rover PRO is the top of the line knee scooter. You will shell out some serious money buying this knee scooter, at least $300. But there is a reason why, it’s the best of the best. It is an indoor outdoor aluminum scooter with shock absorbers. It can take you easily from smooth sailing on a sidewalk to navigating gravel. The amazing thing is your body won’t tell the difference. It’s sturdy and smooth riding, no matter the terrain. It comes with the attachable basket and folds. The seat is adjustable as well.

Which knee scooter are you using? How has it helped you navigate life with Charcot Foot and foot problems? We want to hear from you. Leave us a message in the comments and share your favorite scooter with us.