Charcot Foot Support

Living with Charcot Foot

How to navigate large events with Charcot Foot

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When you have Charcot Foot you frequently have to miss out on large activities or events. When you are non-weight bearing you won’t be planning any trips with the family to the zoo or an amusement park. The state fair or a large sporting event are off the list too. But when you are able to bear weight is it possible to attend large events? We have had many readers ask us how we manage activities and events without overdoing it. So here are a few of our tips.

Plan ahead

Before attending a large event we recommend doing a little recon. Most events or locations have websites associated with them. Visit the website and see what information you can gather about parking and any accommodations they may offer.

“I wanted to take my children to a large zoo but knew I couldn’t walk that far,” Jessie said. “So I got online and checked out the zoo’s website. They actually had electric wheelchairs available to rent. I called ahead and reserved a wheelchair for the day we were going and it made the trip a breeze.”

If you can’t find the information you need on the event or location website pick up the phone and give them a call. Ask about parking options, electric scooter or wheelchair rental and if they offer any assistance to those with disabilities.

Also consider printing out a map of the location you will be going ahead of time. If there are certain attractions you know you really want to see make it a point to visit those first. Then if you become tired or experience difficulties and need to leave early you haven’t missed out on your top destinations.

Planning ahead will help make you feel more relaxed the day of the event so you are able to really enjoy yourself.

Ask for assistance

Charlie loves to attend sporting events and has found attending professional football and baseball games to be easier than he expected. Both of the stadiums he visits offer assistance for those with disabilities. He parks in the handicap section and then an assistant comes with a golf cart to give him a lift.


“They will take me right to my seat and even come back to check on me to see if I need help getting to the restroom or need a snack,” Charlie said. “I don’t have to miss out anymore.”

Most large destinations, like amusement parks, offer parking lot tram services. Most frequently, the trams stop very close to handicap parking spots. You can catch a ride on the tram to the entrance where you can rent a scooter or wheelchair for the day.

Even if a location doesn’t offer the kind of assistance Charlie receives most locations offer some type of assistance. Simply ask an event worker or location employee for the assistance you need. The majority of the time they are happy to help.

Go prepared

When attending a large event make sure you leave the house prepared. Always wear the shoes/boots/braces your doctor recommends. Take any medication you will need with you and pack a snack. The last thing you want is for your blood sugar to drop while you are out and about and trying to enjoy yourself.

“When I go to large events, like concerts, I always make sure I have my medical alert bracelet on,” Pam said. “I also make sure my little information packet about Charcot Foot and Diabetes is in my purse. That way if something were to happen the paramedics would know quickly what may be wrong.”

It also never hurts to take another person with you. Plan to attend larger events with a family member or friend who can offer assistance as needed. If you are taking your children to an activity or event it can be helpful to have another adult with you to help manage the situation and support you.

If you have questions about living with Charcot Foot, contact us. We are happy to try to track down the answers for you.

Living with Charcot Foot: Mark’s Experience

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Mark is a 64-year-old male living in Texas who has been battling Charcot Foot for over 10 years. He experienced delayed diagnosis, two difficult surgeries and has embarked on his own crusade to try to manage Charcot Foot to the best of his ability. We are so thankful he is willing to share his experience living with Charcot Foot.

Foot Pain

Mark says he has experience foot pain or sore feet every day for the last 20 years. Long before his Charcot Foot diagnosis he was experiencing foot pain but wasn’t certain why. He often attributed the pain to being on his feet for long hours during work.

“I was a police officer for 28 years and spent 20 of those years on a walking beat,” Mark said. “I easily walked 15 miles in a shift so having sore feet just seemed like part of the gig. The sore feet changed to actual pain at some point but I just thought it was the job.”

He had side of foot pain and pain on top of the foot mainly. He also regularly experienced swelling and on occasion his foot would be hot and red. He would rest for a few days and the swelling and pain would subside.

Charcot Foot Diagnosis

After a particularly long week at work Mark experienced extreme swelling and pain. He couldn’t walk because of the swelling in his right foot and his left foot was almost as bad. He scheduled an appointment with a doctor and was diagnosed with Cuboid Syndrome. Cuboid syndrome is the result of partial dislocation of the bones in the middle of the foot. He sought a second opinion and was diagnosed with a Lis Franc fracture as well as Cuboid Syndrome. He underwent his first foot surgery at that time.

“I should have never had that first surgery,” Mark said. “My gut was telling me both doctors were wrong but I just wanted to feel better and get back on my feet. It was about eight weeks after the first surgery I realized how wrong they had been.”

At his two month follow up surgery it was obvious he had a rocker bottom and his doctor mentioned Charcot Foot for the first time. Mark remained non-weight bearing for another two months after surgery and then went into a CROW boots. He maintained with the CROW boots for another five years.

Foot Surgery Recovery

Five years after his first surgery Mark had foot reconstruction surgery done and had external fixators. The recovery process was long and fraught with complications. He had several infections which delayed recovery and had a difficult time managing his pain.

“I will never put myself through a surgery like that again,” Mark said. “I have never wanted to eat a bullet so bad in my life. The recovery process was horrible and not worth the end result.”

Mark admits he began taking too much pain medication during the recovery stage which led not only to an increase in his depression but also addiction. After eight months non-weight bearing Mark was finally released to walk. After everything he had been through he had to return to the CROW boots and was addicted to pain medication. He knew he had to take control of his own care.

Regaining control

Mark checked himself into a drug and alcohol treatment center and stayed there for 45 days. He was able to get off of the pain medication and did a lot of therapy to help him process how much his life was changing due to the Charcot Foot. Over the course of his time in treatment he was able to get a clearer view of what he needed to do to get healthy.

“Going to treatment was the smartest thing I ever did,” Mark said. “I had support, I had people helping me set goals, helping me see there was still a future. Most of all I learned how to manage my pain in a healthier way.”

Upon leaving treatment Mark began exercising daily, he swims, does chair workouts and strength training. He also began making time to meditate every day which he credits with helping manage pain as well as stress. He has changed his diet and dropped his A1C to 6.2 from over 10.

“My goal is to get as healthy as possible before I have my feet amputated so I can recover well and get back to living,” Mark said.

We appreciate Lindsay’s willingness to share her experience living with Charcot Foot. You can read about the experiences of Jessie, Beth, Jennifer , Joe, Lindsay and Charlie as well. If you would like to share your experience with Charcot Foot please contact us.

Living with Charcot Foot: Courtney’s Experience

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Every person living with Charcot Foot faces uncertainty. For Courtney, the uncertainty of Charcot Foot has become overwhelming. She says the emotional toll of Charcot Foot has been far worse for her than the physical impact. We are thankful Courtney has decided to share her experience living with Charcot Foot.

Multiple surgeries to treat Charcot Foot

Courtney has had multiple surgeries on both feet due to Charcot Foot and secondary infections. She has had ulcers that were slow to heal and has experienced many slow healing wounds due to diabetes and Charcot Foot. Her surgeries have included the removal of two toes, one surgery with an external fixator, two corrective surgeries to treat wounds and infection following her external fixator surgery and a surgery to clear infection from an infection related to an ulcer. She anticipates more surgeries in her future.

“I’ve spent 22 of the last 36 months non-weight bearing and recovering from surgery,” Courtney said. “A lot of people think I should just give up and go with amputation but I don’t want to go that route yet. I do think the surgeries have helped me keep my feet. I’m just not as mobile as I’d like to be.”

Currently, Courtney is being treated for another bone infection. She has an appointment with a surgeon soon and is fearful she is reaching the point where amputation is the only option.

Emotional impact of Charcot Foot

Courtney is 59-years-old and married. She has one adult daughter. Both her husband and daughter have been a good support to her but both are now urging her to consider amputation. Courtney is hesitant to move forward with amputation because the anxiety she now feels.

“I’ve been inside for so long now, shut off from the things I used to enjoy,” Courtney says. ” If I had the amputation I could probably walk again, go do things, travel. But the idea of leaving the house, talking to people, being in a crowd… it makes me have a panic attack just thinking about it. I think I use Charcot as an excuse now to just stay in and not deal with my anxiety.”

Prior to being diagnosed with Charcot Foot, Courtney says she experienced small bouts of anxiety and depression. Since her diagnosis she reports a marked increase in the frequency and intensity of her anxiety and depression. She has talked with her doctor about her feelings and has started taking medication to treat both the anxiety and depression but she has not sought out therapy services.

“I don’t want to talk to a therapist about it,” Courtney says. “I’m a private person. And I’d have to go to a therapist’s office and that is just one more trip my husband or daughter would have to help with.”

Coping with Charcot Foot

Courtney says coping with Charcot Foot has become her full-time job. Since she is home bound she says she spends a good deal of time researching Charcot Foot. She has recently become very interested in the nutritional component and says that since changing her diet she has seen an improvement in her Charcot Foot and feels better emotionally. She is now follow a high protein, low carb diet.

She took up crocheting when she was diagnosed with Charcot Foot and enjoys the feeling of accomplishment she has when she completes a project.

Courtney says she also notices a difference in her mood when she keeps her mind busy. She tries to complete a puzzle every week and it has become the family joke that no one can leave the house without getting three pieces put together. She also likes word searches, crossword puzzles and reading.

To help take some of the load off of her husband and daughter she orders almost all of her groceries through AmazonFresh. She is the second person we have met using AmazonFresh and she has been pleased with the service. She can have unlimited groceries delivered to her door for $14.99 a month.

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“I get creative and have figured out a way to have almost everything I need delivered to the house,” Courtney says. “I haven’t really walked or shopped in over two years now. It’s amazing how many things you can have delivered. Is it the way I pictured living my life, no, but I’m able to have my needs met and I think I still have a good life.”

Courtney is a very private person and we know sharing her experience with Charcot Foot was challenging for her. We are so very thankful she decided to push herself and share with us and our readers. We know Courtney isn’t the only person with Charcot Foot struggling with anxiety and depression. Even if you are stuck at home there are still options for mental health support. Consider giving Better Help Online Counseling a try or reach out to your local mental health center. Some therapists are willing to do home visits. Please know you aren’t alone.

If you would like to learn about the experiences of others living with Charcot Foot take a moment to read about Jessie, Jennifer, Charlie, Joe, Beth and Lindsay. If you would like to share your experience contact us.

Chiropractic Care and Charcot Foot

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Many people with Charcot Foot never consider visiting a chiropractor or seeking chiropractic care. While a chiropractor cannot cure Charcot Foot there are many ways chiropractic care can be beneficial for those living with Charcot Foot.

Chiropractic adjustment

A chiropractic adjustment can be incredibly beneficial for those with Charcot Foot. We often spend so much time non-weight bearing or sedentary that it is easy for our spine to get out of alignment. How often do you find yourself laying on the couch with one foot elevated and experience pain in your lower back? It’s common! A visit to a chiropractor for an adjustment will realign your spine and reduce some of the discomfort associated with sedentary life.

When wearing a boot it is also very easy for your hips and pelvis to become unaligned. You may notice hip or knee pain the longer you wear a boot. A chiropractic adjustment will also realign your hips and pelvis. This can help prevent sciatic pain and reduce walking with a limp.

Total Health Chiropractic

Chiropractors often focus on the total health of their patients. It has been our experience that chiropractors take a more holistic approach than medical doctors. This can prove beneficial for those with Charcot Foot because of the wide range of health conditions and symptoms we have.

Total health chiropractic includes not just chiropractic adjustments but also looking at how nutrition impacts overall health. Chiropractors are often well versed in vitamin and mineral supplements. They can make well-informed recommendations to help improve your health and address any nutritional deficits you may have.

Whether you seek chiropractic care for a chiropractic adjustment or for total health chiropractic care it can help. There is no cure for Charcot Foot but exploring all health options, including chiropractic care can help decrease secondary pain and symptoms. As usual it never hurts to visit with your physician and seek their input on chiropractic care.

Living with Charcot Foot: Lindsay’s Experience

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One thing we hear over and over from people living with Charcot Foot is how often they experience delayed or misdiagnosis of Charcot Foot. However, of all the stories we have heard Lindsay’s delayed diagnosis takes the cake. Lindsay first hurt her foot and began experiencing Charcot Foot symptoms in 2011 but wasn’t accurately diagnosed until 2018. She has agreed to share her Charcot Foot experience with others.

Botched surgery

Lindsay’s background is in nursing so when she hurt her foot in 2011 she reached out to medical professionals she trusted, whom she thought were qualified and professional. Unfortunately, she quickly realized there are few physicians who have experience with Charcot Foot and know how to properly treat it.

“I saw seven or eight orthopedists, a couple podiatrists,” Lindsay said. “I had surgery in 2017 which was a misdiagnosis and the wrong surgery. It’s been a nightmare.”

She was also seeing a neurologist who brought up Charcot Marie Tooth to her. At the time she didn’t realize Charcot Marie Tooth and Charcot arthropathy are completely different conditions. The surgeon who performed the surgery in 2017 talked with Lindsay about having the neurologist rule out Charcot Marie Tooth but never mentioned Charcot arthropathy, the differences between the conditions or that it was even a possibility to have Charcot Foot.

Interviewing surgeons

After the botched surgery and meeting with so many physicians who knew nothing about Charcot Foot, Lindsay changed her approach. Rather than placing her faith and her body in the hands of physicians trustingly she decided medical professionals needed to earn the opportunity to treat her. Now instead of going to medical appointments and having a surgeon tell her what needed to be done she went in prepared and interviewed them.

“I researched the heck out of this disease and I wasn’t coming in and offering myself on a platter to anyone ever again,” Lindsay said. “I made him basically interview for the privilege of taking care of me. I saw that he had the skills and knowledge, he had done a residency at Duke in Charcot Foot. ”

Lindsay videotaped their entire interview and shared it with others with Charcot Foot. She went in prepared, having researched the different methods available for reconstruction. They reviewed beaming, plating and screwing, internal and external fixation and created a surgery plan together to best meet the unique way Charcot Foot presented in Lindsay.

Lindsay had reconstructive surgery in March of 2018 and it was quite successful. More successful than her surgeon anticipated. She has regained almost 50 percent of her arch, has minimal pain and is transitioning from a boot to orthotic shoes.

Taking Control

Lindsay attributes the success of her surgery to taking control of her own health. Once she realized she had to take charge of her own medical care she TOOK CHARGE and has completely transformed her health and her life.

She began by taking a good hard look at how nutrition was impacting her health. She researched vitamins, minerals and supplements. She explored how carbs, protein and fat impacted her body. She cut out soda. She began to monitor her blood glucose religiously and eating to her meter. All of these changes improved her bone health tremendously.

“We anticipated doing beaming on me,” Lindsay said. “I started taking vitamins and supplements on my own before surgery to make sure I was really healthy. I started doing a Keto diet. He got in there and my bone quality was so much better than he thought that he ended up doing screws and plates.”

Not only did her bone quality improve but her overall health has improved. Lindsay’s blood glucose is in a healthy range, she has lost weight and she is full of energy. By taking control of her health, dealing with her emotions using healthy coping skills rather than overeating and making small changes on a daily basis she has experienced a complete transformation.

“I just decided that was it, I’m taking charge,” Lindsay said. “I’m done, I want better than what I have, food isn’t worth it anymore. So I took charge, I took myself back and I feel fabulous. I can’t tell you how many pounds I’ve lost but it is significant inches, most of my clothes are too big. I’m not doing it for weight loss I’m doing it as a new way of eating for the rest of my life.”

Helping others with Charcot Foot

Lindsay has spent so much time researching Charcot Foot in general, exploring Charcot Foot treatment options and exploring the impact of nutrition on Charcot Foot. The knowledge she has gained has changed her life and now she hopes to be a help to others. She gained a great deal of support from online groups focused on Charcot Foot, low carb/high fat diet and other issues that she is now a regular contributor to the sites, sharing information wherever she can. She has made connections with others living with Charcot Foot and is always willing to help by sharing information and her experience. She is even considering writing a book and starting a website.

“It helps me a lot to think that what I went through isn’t in vain,” Lindsay said. “It can serve a purpose, there is a positive in almost everything if you look and find it.”

We appreciate Lindsay’s willingness to share her experience living with Charcot Foot. You can read about the experiences of Jessie, Beth, Jennifer , Joe and Charlie as well. If you would like to share your experience with Charcot Foot please contact us.

Charcot Foot Terminology

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AFO, NWB, CROW, these are just a few of the acronyms you are going to hear shortly after being diagnosed with Charcot Foot. In fact, you are going to hear so many new terms your head may be spinning. To help you out we have put together this helpful guide to Charcot Foot terminology.

Charcot Foot: A condition causing weakening of the bones in the foot that can occur in people who have significant nerve damage (neuropathy). The bones are weakened enough to fracture, and with continued walking, the foot eventually changes shape.

Peripheral Neuropathy: A result of damage to the nerves outside of the brain and spinal cord (peripheral nerves), often causes weakness, numbness and pain, usually in your hands and feet. It can also affect other areas of your body.

Neuropathic pain: Pain associated with peripheral neuropathy, often described as sharp pains, burning pain or the feeling of pins and needles.

Non-weight bearing: Often abbreviated as NWB. This means placing no weight on your foot. During periods of non-weight bearing you should use crutches, a knee scooter or wheelchair to move about.

CROW boot: Charcot Restraint Orthotic Walker, abbreviated as CROW, combines an ankle/foot orthosis and a custom boot to aid in the treatment of Charcot Foot. The boot is designed to reduce plantar surface pressure with the familiar bi-valve configuration and rocker bottom sole.

AFO: An ankle-foot orthotic, or AFO, is a support intended to control the position and motion of the ankle, compensate for weakness, or correct deformities. It is prescribed for the treatment of Charcot Foot as it can protect the foot.

Podiatrist: Podiatrists are healthcare professionals who have been trained to diagnose and treat abnormal conditions of the feet and lower limbs. They also prevent and correct deformity, keep people mobile and active, relieve pain and treat infections.

Orthopedist: An orthopedic surgeon, a physician who corrects congenital or functional abnormalities of the bones with surgery, casting, and bracing.

Orthotics Practioner: Also known as an orthotist. They design, fabricate, and fit custom-made orthopedic braces, or “orthoses,” and fit pre-fabricated devices, and provides related patient care.

Prosthetist: A prosthetist designs, fabricates, and fits custom-made artificial limbs, or “prostheses,” and provides related patient care.

Amputation:  The surgical removal of all or part of a limb or extremity such as an arm, leg, foot, hand, toe, or finger. Amputation of the leg, above the knee (AKA) or below the knew (BKA) is the most common in those with Charcot Foot.

Physical Therapy: The treatment of disease, injury, or deformity by physical methods such as massage, heat treatment, and exercise rather than by drugs or surgery. Those with Charcot Foot often find physical therapy helpful to strengthen core muscles and aid with balance.

Occupational Therapy: A form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life. Those with Charcot Foot can benefit from occupational therapy to assist them in learning to live with limited mobility issues.

Hopefully this guide to Charcot Foot terminology will be helpful for you. Are there other terms which were new to you upon diagnosis? We would love to include them to assist others.