Charcot Foot Support

Charcot Foot Diagnosis

How To Complete Daily Tasks When Non-Weight Bearing

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Most of us with Charcot Foot panicked the first time we were told we had to be non-weight bearing. It’s overwhelming to try and comprehend how to complete daily tasks when non-weight bearing. The idea of showering, cooking, driving, working, taking care of our children, or even going to the bathroom when we aren’t able to walk normally is almost to much to fathom in those early days.

There is that old saying, “Where there is a will, there is a way.” Individuals with Charcot Foot show time and again how true the statement is. We figure it out, we are resourceful and we get ideas from others. Here are some of the ways we have managed to complete daily tasks even when we are non-weight bearing.

Knee Scooters

Knee scooters quickly become the best friend of individuals with Charcot Foot. At first it may be a dreaded friend but it quickly becomes a life saver. Not only can it help you stay somewhat mobile must knee scooters come with a handy dandy basket! That basket has been a lifesaver to many with Charcot Foot.

We recommend buying a knee scooter rather than renting one. In the beginning, it is easy to think you will just need the scooter for a few weeks following diagnosis or surgery and then you can return it. The truth is the knee scooter will be helpful even after your doctor releases you to begin walking again.

There is always a chance you will need to be non-weight bearing again and if you own the scooter you already have it on hand. But even once you get walking again there are always those bad days where your feet may hurt more than others. Those are the days the scooter is just good to have. You can hide it away somewhere but when a rough day hits it is still readily available.

Assistive Devices

Assistive devices also know as daily living aids are so incredibly helpful! Daily living aids include items like grabbers, shoe horns, adjustable trays to place beside your bed or chair and elastic shoe laces. They may seem like small items but they can help you accomplish tasks while you are non-weight bearing and save you a lot of energy and frustration.

Bath and Shower Safety Aids

One of the big concerns for most of us when we have to go non-weight bearing is how in the world we will shower. The good news is there are tons of Bath and shower safety aids out there designed to help us. Even though tools like shower chairs and adjustable shower heads can help us tremendously we still recommend showering when someone else is in the home just in case you fall and need assistance.

Delivery, delivery, delivery

When you are non-weight bearing it is nearly impossible to do your own shopping. Not only is this an inconvenience but the isolation and loss of independence can be a huge blow to your emotional health. While delivery services don’t alleviate the isolation they do provide an answer to the question of how in the world you are going to get groceries.

If you weren’t an Amazon Prime member before Charcot Foot you most definitely need to be one now! With Amazon Prime you can get just about everything you need delivered to your door in two days. It’s a little bit of heaven. Amazon Prime also gives you access to a number of movies and shows to help keep you occupied while non-weight bearing.

There are many grocery stores that have delivery services. Delivery services do vary based on your location so you will have to check with individual stores. We have had success with Aldi and Dillon’s for grocery delivery. Wal-Mart offers curbside pick up which is another great option. You can place your order online and have a friend pick it up for you. Amazon Fresh is also being rolled out in some locations. Courtney is using it and says it’s a great program as well. It is likely to expand quickly to include more locations throughout the country.

Being non-weight bearing is tough. We will never claim it is an easy experience. But there are tools and resources out there to help. And remember, we are always here! If you need to vent, have questions or need some extra support, contact us!

Educating others about Charcot Foot

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Over time we have found very few know about Charcot Foot until they are diagnosed with it. By the time diagnosis happens it’s too late! The damage of Charcot Foot can’t be reversed and people are left lamenting and wishing they would have known about Charcot Foot before so they could have taken steps to prevent it. This is why we are so passionate about educating others about Charcot Foot. If we can spare even a few people from this condition it is worth it.

We recently stumbled upon a nurse and diabetes educator who shares the same passion of educating others. Nurse Master Charlie is his name and educating others in a fun way is his game! We found Nurse Master Charlie on Twitter when he shared a music video about Charcot Foot. Say what? A music video about Charcot Foot!?! It’s true! He wrote it and produced it and we LOVE it! We can’t wait to hear what you think.

Nurse Master Charlie has some other great songs out there. He also has some great informative and fun posts on Twitter. He is worth following and keeping up with. We think he will have some awesome new stuff we will all enjoy.

Charcot Foot Surgery

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One of the great debates among those living with Charcot Foot is their opinion on Charcot Foot surgery. Some people believe reconstructive surgery is the way to go. Others avoid surgery at all costs. In some cases surgery isn’t a viable Charcot Foot treatment option while for others it can’t be avoided. With all the different opinions how do you ever decide if Charcot Foot Surgery is an option for you?

We reached out to several people living with Charcot Foot and got feedback from them. We thought we would share some of their thoughts about surgery and what helped them make a decision.

Correcting Charcot Foot Deformity

Charcot Foot surgery is often performed in hopes of correcting Charcot Foot deformity. The goal of surgery is to remove bony protrusions and correct the rocker-bottom associated with Charcot Foot. In theory, this is a fabulous idea. Wouldn’t we all love to have an arch again and have a stable foot. The reality is reconstructive surgery for Charcot Foot is very rarely successful long term.

One important thing to remember is there is no surgery or treatment option that will cure Charcot Foot. No matter how successful a surgery is you will still have Charcot Foot and can continue to experience fractures. Keeping this in mind is important in making a decision about surgery.

Lindsay had reconstruction surgery for Charcot Foot and has experienced amazing results. She is one of the few we know who have had favorable results. Prior to her successful surgery she experienced a botched surgery. The second time around Lindsay interviewed doctors until she found someone specializing in Charcot Foot. She encourages others to do the same. She also prepped her body for surgery, taking supplements and eating a healthy diet to get her A1C in a healthy range.

Since having surgery she has regained about 50 percent of her arch and will be able to wear shoes with custom inserts.

Stabilizing Charcot Foot

Jessie also had surgery as a result of Charcot Foot. Prior to being diagnosed with Charcot Foot she experienced a Lis Franc fracture. When the surgeon went in to repair the fracture and dislocated metatarsals he recognized it was Charcot Foot. Jessie’s foot was stabilized with pins, plates and screws. While she healed well from surgery and her toes have remained in placed her rocker bottom persists.

Jessie and her surgeon agree that she will have no further surgeries. In her case, surgery is very high risk with a very low chance of success. The time spent non-weight bearing after surgery when it won’t lead to a long term solution isn’t something Jessie is willing to consider.

“I’m glad I had the first surgery,” Jessie said. “It did realign my toes and I can now walk with AFO braces. But the next surgery I have will be to amputate. I’m young, 39, with two small children. I’m not willing to have surgery, be non-weight bearing and not have a permanent fix. I miss too much time with them. I have no doubt I could rehab quickly after an amputation and be in a better position to parent than I would be sitting on the couch after multiple surgeries.”

Treating infection

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.”

Creating a Treatment Plan

When considering Charcot Foot surgery or any Charcot Foot treatment option you should always work with your surgeon or physician to create a treatment plan you are comfortable with. For Lindsay, that meant finding a qualified surgeon and preparing herself for surgery so she would have the best outcomes. For Jessie, that means keeping her feet stable as long as possible and then moving forward with amputation. For Courtney, that means multiple surgeries with a goal of keeping her feet as long as possible.

The key to any surgery decision is your comfort level and your overall health. Each person with Charcot Foot is different. What may be a good plan for one person may be a horrible plan for another. If you aren’t comfortable creating a treatment plan with your physician you need to find a physician you are comfortable with.

No surgery decision can be taken lightly. You should always consider your risk factors and ultimate goals for living with Charcot Foot. Other factors to consider are:

  • Your A1C (If your blood sugar is not under control you should not have surgery)
  • Your overall health (Think blood pressure, weight, risk for blood clots, how well you heal)
  • Time away from work (How long will you need to be non-weight bearing)
  • Support from family and friends (You will need help in the first days/weeks after surgery)
  • Will surgery help you meet your long-term goals

Always talk over all of your concerns with your physician and never hesitate to get a second or third or fourth opinion.

Have you had surgery to treat Charcot Foot? If you are willing to share your surgery experience please contact us.

Living with Charcot Foot: Joe’s Experience

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Navigating life with Charcot Foot has been a difficult experience for 72-year-old Joe. Joe was diagnosed with Charcot Foot in 2016. He has agreed to share his experience living with Charcot Foot in an effort to help others.

Living with foot pain

Joe had experienced foot pain for many years. He described the neuropathic pain as intense and unrelenting. He would experience intense pain on the top of the foot and on the sides of his feet. He also had numbness and tingling in his feet and legs.

“The foot pain started in my early 50’s,” Joe said. “It was intense but I tried to ignore it. I didn’t mention it to my doctor very often, I didn’t take pain pills, none of that. I was just going to tough it out.”

Toughing it out didn’t work well for Joe. He had difficulty sleeping due to the pain and began to stumble when walking. Ten years prior to his Charcot Foot diagnosis he stumbled and fell while coming up his front steps. He experienced his first break at that time but didn’t know it for several weeks.

“I fell and broke my foot and I still ignored it,” Joe said. “I don’t know why I was so stubborn. But I ignored it until I almost couldn’t walk, weeks later. I was put in a boot for six weeks but it didn’t heal well. That was the beginning of the Charcot I think but my doctors didn’t diagnose it until 2016.”

For years after breaking his foot he struggled with swelling in his foot and continued foot pain. Joe continued to ignore the problem and wasn’t completely honest with his doctor about how he was feeling. The lack of medical care likely increased the damage being caused by Charcot Foot.

Mobility issues

Due to the continued foot pain and the failure of Joe’s foot to heal properly he began having mobility issues. By Christmas of 2015 he wasn’t able to walk up the stairs to his front door.

“I was trying to carry in some Christmas decorations in 2015 and I couldn’t do the stairs,” Joe said. “The pain wasn’t bad but it was like my feet wouldn’t work. I couldn’t put enough pressure or enough strength to lift myself up the stairs. My daughter saw me struggling and then I had no choice but to get to the doctor.”

Joe may have avoided dealing with his mobility issues and medical concerns but his daughter did not. She was persistent, making appointments for Joe and attending them with him. It took a handful of appointments with different doctors before he was properly diagnosed with Charcot Foot.

With a diagnosis the reality of Charcot Foot treatment began to sink in. He spent six months non weight-bearing and struggling to live life with mobility issues.

“Crutches, a knee scooter, boots, I hated it all,” Joe said. “I couldn’t figure out how to get things done around the house without being able to walk and living on my own. It took a lot of creative thinking and I figured it out but it was a pain in the ass.”

Joe says crutches didn’t work well for him because he had such poor balance. He preferred using a knee scooter and became quite adept at getting around the house on the scooter. When in public he would use the knee scooter or if he was with his daughter she would push him in a wheelchair. It was a blow to his ego but he adjusted.

“I was telling a guy who was recently diagnosed with Charcot Foot that it felt like this condition stole my manhood,” Joe said. “I could do all kinds of things before this and prided myself on being independent. I’ve had to adjust to a new way of living. I’ve had to learn to ask for and accept help.”

Joe’s Best Friend

One of the biggest helps in Joe’s life is his best friend, Skip. While Joe doesn’t have a good leg, Skip has four legs and a big heart. Skip is a chocolate lab and Joe’s constant companion. Though not formerly trained as a service animal, Skip performs many duties for Joe and makes his life easier.

“Skip does so much for me,” Joe said. “Skip opens doors for me when I’m not able to walk and I’m using the scooter or crutches. When I need to get up and I’m not close to a piece of furniture I push up on Skip. When I’m walking and start to lose my balance he automatically leans into me to help brace me. He is the best dog a guy like me could have.”

Joe says Skip is just one way he has had to think outside the box to find a way to navigate his new life with Charcot Foot. After spending so many years living independently he had to change his perspective and learn new ways to cope and survive. Though the journey has been a challenge Joe says it’s worth it.

“I don’t want to have Charcot Foot,” Joe said. “But I have it. It will never go away and we all have to find a way to continue living. When I was first diagnosed I thought about just throwing in the towel, hanging myself and calling it quits. Now I’m glad I didn’t. Life isn’t perfect, but it’s still a good life.”

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

Recognizing Charcot Foot symptoms

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All too often, Charcot Foot is misdiagnosed or a diagnosis is delayed. Delayed diagnosis and misdiagnosis can lead to an increased risk of deformity and amputation. So what are the signs and symptoms of Charcot Foot?

Charcot Foot symptoms include swelling of the foot and ankle. Some people with Charcot Foot report significant swelling, regardless of if they stay off of their feet or not. Another symptom of Charcot Foot is redness of the foot. The foot will also be warm to the touch. A Charcot Foot is often much warmer than other parts of the body.

Any of these symptoms in a person with diabetes and/or neuropathy should lead a person to consider Charcot Foot as the culprit. Though the combination of symptoms are typical of Charcot Foot it still continues to be misdiagnosed or not diagnosed on a regular basis. Frequently, people are diagnosed with cellulitis when in fact they are suffering from Charcot Foot.

Charcot Foot Deformity

Foot deformity is another sign of Charcot Foot. As Charcot Foot progresses and the foot fractures more it leads to a deformed foot. The Charcot Foot can take on a “rocker-bottom” appearance when the arch of the foot collapses. As the foot heals and the bones consolidate the foot can also take on a deformed shape as a result.

The Charcot Foot deformity will lead to problems with balance. It’s incredibly difficult to balance and walk with a “rocker bottom”. The foot deformity will also make it difficult to find shoes which fit.

Escalating foot problems

Foot problems are likely to escalate for those with Charcot Foot. Those with Charcot Foot are at an increased risk for developing ulcers and sores on their feet. These wounds can lead to infection which can in turn lead to amputation. Any sign of ulcers, sores or wounds should be taken very seriously and treated quickly.

It is not uncommon for individuals with Charcot Foot to have toenails fall off or become brittle and break easily. Charcot Foot sufferers also report having very dry skin and varying levels foot pain.

If you experience any of the symptoms of Charcot Foot or signs of an escalation of your Charcot Foot it is important to visit a doctor immediately.

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.