Charcot Foot Support

mobility issues

Those with Charcot Foot asked to provide feedback

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Researchers at Results Group LLC, funded by the US National Institutes of Health to develop a
new system to help people with mobility impairments. We are conducting interviews to gather
information about the mobility of those with Charcot Foot and their shoe type preferences. We
are looking to interview those who have difficulty walking. The goal is to be able to better
understand the activities of those with Charcot Foot in order to design a higher quality product
that assists with mobility in a variety of ways. 


They are seeking participants who would be able to participate in a 20 to 40 minute interview
either online or by telephone, based on your preference. Interviews can be scheduled during
morning, afternoons, or early evenings. 


All participation is voluntary and information is kept confidential. There is a $25 gift card as a
thank you for completing of the interview. 


This study has been approved by the IRB. 


For more information or if interested in participating please contact the research group at
interviewsresultsgroup@gmail.com

Thank you for your consideration.

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.

The impact of Charcot Foot deformity

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Charcot Foot most often leads to deformity of the foot. The repeated weakening and fracturing of the bones in the foot cause the foot to become deformed. Many people with Charcot Foot deformity experience a “rocker-bottom” after their arch collapses. The deformity caused by Charcot Foot can cause many complications and impact those with Charcot Foot significantly.

Foot pain and ankle pain

The deformity caused by Charcot Foot can lead to foot and ankle pain. When bones fracture and consolidate it can cause pain because the bones don’t heal correctly and at times there are bone fragments in the foot. Those fragments can press against the nerves and tendons in the foot and cause pain. The “rocker-bottom” can also be painful. Pressure on the bottom of the foot can increase pain. Additionally, because of the deformity there may also be bony protrusions on other areas of the foot which may be painful.

While breakage of the ankle is less common with Charcot Foot there is still a potential for ankle pain. The AFO braces or CROW boots usually required for those with Charcot Foot can cause weakening of the ankle muscles. The lack of regular movements and use of the ankle due to the restriction of the braces causes weakening. Then when you do use your ankle more it is likely to hurt.

Mobility issues

Charcot Foot deformity is a primary cause of mobility issues. When in the acute stage of Charcot Foot most people are non-weight bearing so their mobility is impacted. But even in the other two stages of Charcot Foot the deformity can limit mobility.

The “rocker-bottom” destabilizes you as you attempt to stand and walk. The lack of balance often makes walking difficult. Even if you can walk for short periods the deformity can make it difficult and painful to walk for long distances.

Orthotics

Because of Charcot Foot deformity orthotics will most likely be necessary. Orthotics, braces, boots or inserts, help in several ways. First, orthotics help to protect your feet from additional injury. Boots and braces in particular serve as a layer of protection for your feet. The hard casing surrounding your feet may not be comfortable but it does help protect your bones.

Custom made orthotics are created using a mold of your foot and leg. Every bony protrusion, the rocker-bottom and any misshapen toes will be accounted for. The custom made orthotics ensure you won’t feel pain when wearing them, which means they shouldn’t cause any sores or wounds on your foot. We wouldn’t describe orthotics as comfortable but they should never be painful. If you feel pain or have any wounds or sores you should return to your orthotist immediately.

Foot deformities of any kind aren’t what any of us want. But the reality is foot deformity is a part of life with Charcot Foot. By wearing proper orthotics and following your physicians direction you should be able to manage the pain associated with foot deformity. Never hesitate to discuss any concerns or pain you have related to foot deformities with your physician.

iWALK2.0 Hands Free Knee Crutch: Product Review

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The most common treatment for Charcot Foot during the acute stage is to be non weight-bearing. Which means crutches and knee scooters are a common tool used by those with Charcot Foot. We have had many readers ask us what we think about the iWalk2.0 Hands Free Knee Crutch. We have spent several weeks trying the product, talking with others who have used it and gathering information. We are now prepared to offer our honest review of the iWalk2.0 Hands Free Knee Crutch.

Fast Facts

  • Designed for both the right or left leg
  • Has quick release straps
  • Knee platform is padded
  • Height adjustments can be made easily
  • Easy assembly
  • Priced at $149.00

Learning Curve

We worked with six individuals with Charcot Foot who tried the iWalk 2.0 Hands Free Knee Crutch. We asked them to try it for one week. Of those six people, three people were able to use it for the whole week. We asked them to share their experiences learning to use it.

“I was able to walk with the hands free knee crutch within about 25 minutes of putting it on,” Joe said. “But it took me at least a day and a half to feel comfortable walking with it. It took at least three days before I felt confident and like I was moving at a reasonably normal pace.”

Joe used the crutch in his home and in his yard. He did not use the crutch in public settings. He felt more comfortable using the crutch in his home versus outside. He says this was due to the uneven ground in his yard and not feeling incredibly confident he could balance on uneven terrain.

“I was walking with the crutch in an hour,” Lori said. “It took me two days to figure out how to go up and down the stairs with it. By the end of the week it felt completely normal to walk with it.”

Lori used the hands free crutch in her home, yard and in the community. She even used the hands free crutch during a trip to the mall. She says she had no problems using the crutch, even in a crowded setting. Her confidence level was higher using the hands free crutch than when she uses traditional crutches.

“I watched the tutorial video two times and was walking about 10 minutes after finishing the video,” Josh said. “Even though I could walk on the crutch it took me about four days to get a rhythm with it. It felt very awkward until day four.”

Josh used the hands free crutch at home and in the community. He attended a baseball game and was able to navigate up and down the bleacher steps on the crutch at day six.

Comfort Level

All six of the individuals on our team say the iWALK2.0 Hands Free Knee Crutch is comfortable. It is obvious a good deal of time was put into designing the crutch to ensure user comfort. The knee platform is padded so your knee doesn’t get sore while using the crutch. Since adjusting the height on the crutch is so easy there is no pain associated to hips being out of alignment.

“Using traditional crutches has always been a painful experience for me,” Jessie said. “My armpits and shoulders would hurt. This crutch was different. The hands free system meant I wasn’t straining my arms. Additionally, I didn’t have any knee pain which I would sometimes experience when using a knee scooter.”

What we liked

There were quite a few things we liked about the iWALK2.0 Hands Free Knee Crutch. After sitting down to talk it over we compiled the following list.

  • The price point – $149.99 seems like a reasonable price for the product
  • For those who could use it being hands free was a relief
  • It is durable and can be used on a number of different surfaces safely
  • It is easy to put on and take off
  • It is well padded to increase comfort
  • The height adjusts so it is usable for short or tall people

Cons

The only thing we found that may be a barrier with this product is the price point. Oddly, we also had the price as a positive. Beth explained this conundrum the best.

“$149.99 seems like a reasonable price for the product,” Beth said. “However, many people with Charcot Foot are unable to work and have yet to qualify for disability. There income is incredibly limited. To them, $149.99 may as well be $14,999. Unfortunately, insurance is unlikely to cover the product so the price could be a real sticking point for some.”

Would we recommend it

We would recommend the iWALK2.0 Hands Free Knee Crutch for people who have Charcot Foot in only one foot. For those individuals the product worked very well and we feel comfortable encouraging others to try it.

“I have Charcot Foot in my left foot but not in my right,” Josh said. “I was able to use the product but I have good balance and no rocker bottom. For me, this has been a game changer. I feel like I’m more mobile which has been a boost to my confidence. I’m glad I tried it and I would recommend it.”

We would not recommend the iWALK2.0 Hands Free Knee Crutch for individuals who have Charcot Foot in both feet. The people in our group with bilateral Charcot Foot were not able to successfully use the crutch. The rocker bottom associated with Charcot Foot caused those individuals to not have the balance necessary to successfully use the device.

“I tried on the hands free crutch, took two steps and knew it wouldn’t work for me,” Jessie said. “I have such bad rocker bottoms on both feet there was just no way I could balance. Even wearing my AFO braces, I just don’t have the balance and control necessary to safely use the product.”

One thing we feel is important to point out is iWALKFree, the company who made the iWALK2.0 Hands Free Knee Crutch takes steps to ensure only those who can use the product purchase the product. Before purchasing there is a video on their website explaining who the product is best suited for. They also clearly state if you cannot balance on one foot for a full 30 seconds then the product isn’t for you. We appreciate their honesty from the start.

We very much enjoyed working on this product review for our readers. We hope you have found it helpful. If you have other products you would like us to review or if you would like to assist with a product review, 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.