Living with Charcot

Bathroom tips

December 1, 2023 by Alex

Tips and tricks for a safer bathroom experience.

Shower seats

Getting around the home with an immobilized foot or ankle is one thing, using the bathroom and shower while not putting weight on your limb is quite another. Before you find yourself scrambling for a wall or counter to lean on to keep from falling, take the take up front to really think about what you'll need and where. The trick is, have something close by at all times that you can safely depend on to support your weight. There are a lot of things you can invest in to make this experience safer and less frustrating. I would start with a small seat or bench outside the shower/bath. This will give you a safe place to sit and take the weight off before and after a shower or bath. Keep a towel hanging within reach as well as your crutches or knee crutch if you have one. I highly recommend a knee crutch if you can manage one. The ability to use both your hands and keep the weight off your foot at the same time is priceless. I would also get a small seat for inside the shower or bath. You don't want to be hopping around on one leg with soap and water all over the floor. Just sit down and relax, take your time and be safe.

Grab bars

Another great tool for safety are the grab bars you can get right from your local drug store or even Amazon. I've included a couple links for shopping. These work by suction and can hold a serious amount of weight safely. Make sure the surface of the shower or bath where you place them is clean and dry before attaching them and check that they're secure often. I would get at least four of them, one for each wall in the shower and place them at a height that doesn't require you to reach. You may also want to consider having a professional install one or more long bars directly into the wall itself. This will cost quite a bit more but if done professionally can also help make the shower or bath look nice.

Walk-in showers/tubs

In my opinion the best option which provides the most comfort, convenience and safety are the walk-in tubs available. They provide a reduced area, easy to get into and out of with hand-held shower sprayers and built-in seats. Everything is with easy reach while sitting. You can find these with heaters, aaromatherapy and chromatherapy features depending on your budget. They are all much more expensive than outfitting a traditional shower stall or bath with accessories but also provide the safest experience in my opinion.

As always, discuss everything with your provider first.

Staying fit

November 1, 2023 by Alex

Don't fall into the trap of using your condition as an excuse to be lazy.

Last time we covered no weight bearing and how critical your compliance with that order is to jump starting the healing process. Today I'll cover staying fit pre and post-surgery or treatment. Before starting any fitness routine it's very important you discuss a strategy with your provider. I highly recommend that you prioritize immobilization before beginning.

Fitness in general can mean many different things. For our purposes, we'll be keeping the plan as simple and efficient as possible. Above all, protect the injured area and be safe. Charcot doesn't discriminate and may affect most major joints, your pelvis and even the spine. For this reason, as a patient, your routine may differ dramatically from others with a similar condition.

Keep moving

Our focus in this article will be on a fit attitude. Let's start with simply moving. Your activity level will generally diminish because you've lost the ability to do a number of things. This shouldn't discourage you from moving around. Get up, crutch or scooter over to the other side of the house and back. Whatever you can do to keep moving is helpful. Keep healthy guardrails around this activity and allow your foot and ankle time to rest inbetween trips. Don't forget R.I.C.E. - rest, ice, compression and elevation. If you're able and your provider has allowed it, do some floor exercises, stretching even consider light handheld weights from a seated position. All these things can help burn calories, improve circulation and most importantly, improve your mood and disposition.

Eat right

Second, you're going to have to be very good about maintaining a healthy diet. Reduced activity also means reduced calorie burn. Stay away from any junk food at all. Eat light and eat often is a strategy I've found to work quite well. Don't feel like you have to have three squares a day. Smaller meals or snacks throughout the day will make it easier to maintain healthy blood sugar levels. Keep carbohydrates and fats at a reasonable level and drink plenty of fluids. Avoid carbonated beverages and alcohol.

Get plenty of rest

Proper sleep is essential to general health, more so when your body is healing. I felt extremely tired throughout the day regardless of what I ate, drank or activity level. Your body is working hard to keep up with the destruction caused by Charcot. Set aside a reasonable amount of time to sleep. Keep it quiet, dark and a little on the cool side. Get yourself a comfy mattress, pillows and blanket if you need. Both your physical and mental well-being depend on adequate sleep. You may want to consider sleep aids if falling or staying asleep are an issue.

As always, discuss everything with your provider first.

Get off that foot!

October 1, 2023 by Alex

What exactly does your provider mean "no weight bearing"?

In my last article, I discussed the fundamental attitude and questions that you should ask your provider. Today I'll get into how best to protect that foot and ankle while you wait to see a specialist. Before going any further however, let's get the really important stuff out of the way. This column is in no way a replacement for a solid discussion with your provider, specialist and surgeon. Your condition will likely take a year or more to resolve. Take the initiative now to develop a close and trusting relationship with all of them.Their knowledge and expertise is your best chance at successfully navigating this condition.

Every thing you do from getting up in the morning to using the bathroom, sitting for meals, watching television, getting around town and everything else is now dependent on staying off your foot completely. The sooner you accept this severe limitation, the faster your Charcot foot can begin to heal. Weight and impact are the two worst things for your foot so stay off it! There are deep dive articles on proper immobilization and getting around with Charcot foot. Check out both of these resources for help finding, acquiring and using any number of items to make your life a little easier day by day.

Here's a quick hit list of things to watch, do, and don't do:

• Do not stand on your foot, "no weight bearing" means no weight!
• Do not rest your foot in a down position. Always keep it above your heart if possible.
• Do not cheat on the first two items. They are arguably the easiest way to get the healing started.
• Do not drive.
• Do get yourself crutches or a knee crutch/walker or a knee scooter.
• Do keep your walking aids near you at all times.
• Do inspect your foot throughout the day. Check for cuts, blisters, anything breaking the skin.
• Do ice your foot throughout the day. I've found it more effective on the back of your knee.
• Do take some baseline measurements (around lower leg, around ankle, around midfoot)
• Do share those measurements with your provider and surgeon or specialist.
• Do pick a first floor space where you can sit comfortably for long periods of time.
• Do get in touch with work and explain your circumstance. You'll likely have to work from home for an extended period.

Some of you may have diabetes which is a red flag for this condition and generally accepted as a trigger for both neuropathy and eventually, Charcot foot. You should be doing everything possible to follow best practices and your provider's orders regarding that disease. The same goes for every other pre-condition of Charcot foot. Several of them are listed on the home page

Lastly, for those of you who exercise, immediately drop everything that requires two feet. No hiking, climbing, running, rowing, boating, diving, jumping, squats or anything else of that sort.

Unless accommodations can be made in every case to keep you entirely off your foot, you shouldn't attempt it. As always, discuss everything with your provider first.

Living with Charcot

September 1, 2023 by Alex

You've just been told by your provider that you have Charcot foot. There are a hundred questions you know you should you have and not one comes to mind. Let's start with the basics.

Charcot foot doesn't have to be the end of enjoying your life. Before you get too down on the news and possible risks and limitations, be grateful you have eyes on the issue.

I've lived with this disease for about ten years now and the single most important thing I can recommend is a positive attitude. Whether it's pre-surgery, post-surgery or years later, a positive mental attitude and outlook is critical for your success. The longer the process runs, you'll need a second thing, grit. Chin up, pads on, time to get tough on this one.

You may be challenged by pain, infection, surgery, no weight bearing and everything associated. The list is extensive. We'll talk through all of them here and you'll also have the benefit of public discussion by the very surgeons and providers caring for patients with Charcot foot.

Don't leave your provider's office until you get as many questions answered as possible. Some suggestions:

• What can I do ?
• What can't I do ?
• What exactly does "no weight bearing" mean ?
• How do I limit my risk of infection ?
• What resources are in the area for footwear, braces, crutches, walkers, and home safety features ?
• Who are the best surgeons that specialize in Charcot foot ?

We'll discuss all these things and more. Be sure to check out our columns on Immobilization and Getting around. This resource will also have feedback and columns written by other patients, providers and the specialists themselves. Check back often to keep in the know!