WELCOME TO CHARCOT CHACHA!

This blogsite was made to share my journey with Charcot foot and to help others by providing inspiration as well as share my tips and tricks for daily living that I have learned along the way.  I am not dispensing medical advice, or stating medical facts, only my opinions and knowledge of Charcot foot as I know it to be.  Please see your physician or medical facility if you suspect you might have Charcot foot.  -Cassandra, Charcot Cha Cha

TO BE, OR NOT TO BE…….

Depressed, that is the question.  And the answer is NO!  Well, try very hard not to be consumed by too much fretting and worrying about your Charcot foot condition.  Indeed there are moments when we realize how much our lives have changed and how much they will surely change in our future.  But every horizon holds a glimmer of hope and that is where I try to stay focused.  My upcoming surgery is a huge fear, and I worry about that 50% failure rate…but that’s also a 50% success rate too!  So it helps me to try to find that glimmer of hope.  Will I be able to return to work, be able to even walk ever again?  All these thoughts are shared by all of us with Charcot foot.   But only time will reveal the answer to those questions, and spending one’s day going over and over the same thought could lead you to be depressed.  I find that the best way to prevent that is to keep your mind occupied as much as possible.  I find that hand/eye coordinate activities are best for me.  Some things you might try doing are:

  • Jigsaw puzzles.  I prefer the 300 to 500 piece because of the smaller finished size, and thus more likely to fit on my desk.
  • Crossword puzzles.  I do all the easy questions first, and hope to have half the letters already for the ones that stump me!
  • Papercrafts, such as making homemade thank-you cards. I like to cut out images from magazines and letters/words to use on mine.
  • Or any other kind of craftwork.  Wood carving, painting,  etc.   I enjoy hand painting old vintage purses, bringing new life to old.
  • Reading the daily papers.  I find that reading the larger daily newspapers front to back to really take you mind on a road trip away from worry and fret.  (Well, at least away from your own!)  As discussed in another post, try to make your surroundings as pleasant as possible, and make sure to keep items within arms reach that you might need throughout the day, and most of all, keep your mind occupied.  Not with the big-picture, and “what-if’s?” but the daily, the here and now.  Make today your only concern.  That old adage of “one day at a time” really does work!  I’m amazed, looking back, that I have been laid-up with non-weight-bearing for five months already!! It has gone by so fast, and it shall for you too.  So chins up my fellow Charcoters, and have a pleasant day!

BEND, FLEX, SQUEEZE, AND MOVE MOVE MOVE!!

Today I want to talk about the importance of exercise for those of us who are either in a state of NWB (non-weight-bearing) on a foot or feet, or perhaps are limiting your walking in order to preserve your foots stability after surgery or wearing a boot or cast.  It is a fact that being sedentary for so long will lead to muscle mass loss, and can increase our chance of getting osteoporosis, (or make it worse, if you already have it).  You might think, “What sort of exercise could I possibly do…I sit all day!”  But there is actually a lot of things you can do to help your body out, even when sitting down.  From your wheelchair, or a firm chair (like a dining chair, not a soft, sinkable bark-a-lounger!) you can do a number of stretching exercises and even throw in a bit of cardio too.  And laying on your bed, you can do several more.   I recommend you make an effort to bend, flex, squeeze several times a day, not just once.  Sitting for long periods of time can lead to a blood clot in the legs, so moving your body and legs helps to prevent that.  If you have heart issues, or have concerns do not hesitate to check with your physician first!

Before I was diagnosed with Charcot foot, I led a fairly active lifestyle,  hiking several times a week, taking my kayak out for a paddle, and riding my bike.  Becoming suddenly chair-bound and sedentary is hard to accept.  But, I was and am committed to not letting my muscles fade into obscurity, so I sort of came up with my own exercise regimen to help keep my blood flowing and heart pumping.  I’ll lift my legs, bringing my knees up as high as I can, alternating legs for 5 times each.  I stretch my arms up as high as I can and then bring them down to touch my toes.  Doing this faster makes it more cardio-worthy.  I’ll lift myself out of the chair to a standing position, then sit and get right back up again, 10 times.  Other chair things are shoulder rolls, rolling each shoulder in a circular motion 10 times in one direction, then 10 times in reverse.  Neck rolls too.  When I am up and about in the walker, I’ll come to a stop and lower myself down towards a one legged squat (I go as far as comfortable…never go farther than comfortable, is my rule…each day comfortable gets lower, so this is good!) hold the position for 5 seconds and repeat 10 times.  Another thing I do (which cracks my mother up) is butt cheek squeezes.  Just compress your cheek muscle and hold for a few seconds and release.  I like to alternate from left to right, which is probably what gets mom giggling!  When laying on the bed there are a number of things you can do that do not involve your foot at all, which is great!  I do crunches, which is to bring up your head and shoulders from a flat laying position.  I started at 10, and can now do 100, (but it’s a grunt!).  I do leg lifts from laying flat on the back, and leg lifts from laying on one’s side.  I’ll do 10 each leg.  I also like to sit on the edge of the bed and pump my legs up and down in synch with my arms super fast for 150 times or so for an extra cardio boost.  Now, I know that these might seem like not much, or for some it might seem too much…but my point is that you try to do something for yourself because it is so important to our bodies.  So remember throughout your day to make attempts at bending, flexing and squeezing!  (be quiet, mom!)

-Cassandra -Charcotchacha copyright 2015

SAFETY AT HOME

I want to talk about the importance of home-safety in regards to our mobility devices.  Wether you are using a walker, crutches, or a wheelchair to get about in your home, having clear,  unobstructed pathways is extremely important.  Since staying NWB (non-weight-bearing) on our feet is so critical to our healing, an opportunity for falling or  stepping on our healing foot is to be avoided at all costs.   Fortunately at my parents house where I am staying, they have a vinyl laminate floor that is smooth for zipping about in my transport wheelchair.  But my mother has all these beautiful hand loomed throw rugs she makes all over the house, so I had to have her set those aside while I am staying here.  Throw rugs, and where carpets overlay other carpets, especially, are dangerous for being a fall or misstep potential if you are not careful.  Always be aware of your surroundings and watch out for small steps or changes in height on the floorways. Vigilance at all times of what kind of surface you are walking on is really key to keeping you on your feet, but removing things like the throw rugs reduces your risk by quite a bit.  So stay on your toes, if even only in our dreams, my fellow Charcoters!

-Cassandra -Charcotchacha copyright 2015

A WORD ABOUT MOBILITY DEVICES

Today I want to talk a little bit about all the various methods of transportation available to those of us suffering from Charcot foot and the dreaded NWB (non-weight-bearing).  Since the very point of NWB is to literally not put any weight on your foot, it means the other foot must now do all the work.  We have to move about in our lives, for numerous reasons.  Getting to the bathroom.  Getting into the kitchen to make a meal,  getting to the car for a run to the store or a doctors appointment, etc.   There are several options to choose from.  There are crutches, walkers, knee-scooters, knee walkers, transport chairs and wheelchairs.  Crutches and walkers use the strength in your arms to lift yourself as you take a hopping step with your good foot.  Knee scooters, and the knee-walker involve placing your bent leg and knee onto a padded platform. In the case of the scooter, you hold onto a steering device on the scooter and propel yourself with your good leg/ foot.  With the knee-walker, you walk almost like you would with your own leg, but instead you are placing your weight on a peg/pole that comes down to the floor from the knee platform, while your bent leg, from the knee to the foot, extends from the platform to the area behind you.

In my case, I choose to use a walker because I found it to be very stable, and I am not! I don’t trust my balance abilities enough to be comfortable with crutches.  It is important you stay within your comfort zone.  Safety first!  I use the walker several times a day, mostly to get into the bathroom, but I also use it to stand, and walk around the house to increase blood flow to my feet.  We shouldn’t sit the entire day, and sitting too long without exercise can lead to blood clots, so I make several trips ‘round the abode a day.  When I am sitting, I have chosen to use a transport chair for my main seat.  It is much like a wheelchair, though it only has 4 small wheels, and not the two large rear wheels used for propelling.  I use my good foot to pull or push myself about.  I have found this to work extremely well for me because I am not one to sit still for long and even if I just need something a few feet away, I can maneuver easily to get it rather than standing up from a non-moving chair and use the walker for two steps!  You do need to have vinyl or hardwood or laminate floors though for best ease of use.  I have found the transport chair super handy because it free’s up my arms and hands.  This allows me  to get into the kitchen and prepare meals without having to wear my good foot out with long-term standing.  Takes a looooong time though, to get used to the turning wheels in the front always bumping into stuff!

A great help and resource is the Visiting Nurse Association.  In my city they operate what they call the “loan closet” and you can borrow, without charge, walkers, crutches, transport chairs, and more.  Visit them at www.vnaa.org.  You can also purchase from Ebay, or wallmart online.  I bought my transport chair from Ebay for $90, which included shipping.  Stay mobile!

-Cassandra -Charcotchacha copyright 2015

Mission Statement

This blogsite was made to share my journey with Charcot foot and to help others by providing inspiration as well as share my tips and tricks for daily living that I have learned along the way.  I am not dispensing medical advice, only opinion.  Please see your physician or medical facility if you suspect you might have Charcot foot.  -Cassandra, Charcot Cha Cha

For information regarding Charcot foot, I recommend The Foot & Ankle Society’s page on Charcot at:  http://www.aofas.org/footcaremd/conditions/diabetic-foot/Pages/Charcot-Arthropathy.aspx

And for information about Diabetes, visit www.diabetes.org  which is the American Diabetes Association.

WALKERS VS. CRUTCHES

WALKERS VS. CRUTCHES

What is your preference?  I’d really like to hear from those using either mobility device why they like to use the one they do.  For myself, I have chosen the walker.  I’m not elderly, and I’m certainly no spring chicken, either.  I do suffer from some form of vanity, but it appears to not affect the part of the brain that freaks out about being seen using a walker.  I suspect, (though can’t back it up with statistics), that anyone younger than 40 is going to go right for the crutches, as walkers seem to relate to old age in many peoples minds.  I’ve known of some folks who were certifiably old, refuse to use a walker for that very reason!  Well, for me that defies reason, and I chose to use a walker because of it’s stability,  and my apparent lack-of!  In the hospital I was given a choice by the physical therapist of crutches, or walker.  She made an assumption (I am assuming!) that I would prefer the crutches (must be because I look younger than my age, no doubt!).  But after just two wobbly steps, I said “no way”!  I mean, it was clear as day to me that I needed something to hold onto whose stability came from itself, and not from me!  I did try crutches later on, around the 3 month mark.  But even though I was able to swoosh about the abode with some amount of grace, I never really felt quite centered and balanced.  And that my friends, is uber important for those with Charcot foot who are being in a state of non-weight-bearing.   Losing one’s balance means a mis-step to correct, and an opportunity to accidentally step on your NWB (non-wieght-bearing) foot.  The primary assist in healing is keeping off that foot, so remember to try to keep good balance no matter which mobility device you select.  So cautiously carry on, fellow charcoters!

The importance of surroundings

The importance of surroundings!

Having Charcot foot is not the end of the world, (though surely may seem like it, at times!) but it certainly is a game-changer and many adaptations have to be made for our daily living.  When we are diagnosed with Charcot foot, we are usually immediately ordered to become “non-weight-bearing” on the affected foot.  Either we are put in an aircast, or  boot, and need to wait several months for our fractures to heal and the bones to come back in alignment, or perhaps have just completed a reconstruction surgery and once again will need to be off the foot completely for several more months.  In either case, we pretty much need to sit down for the entire day, usually in one spot, to avoid getting up and down repetitively.   You might ask why must I stay put?  Remember, if you have one Charcot foot, the other foot becomes your one source of mobility, and it has to carry the burden now of doing all the supportive work…you need to be sure not to over-stress your good foot because we now are relying on it 100%!  In addition, our good foot is vulnerable as well of getting Charcot, so give it a break.

And it is for this reason that one’s surroundings become important in that it can affect our well-being to some degree.  With hanging out in one spot for such long lengths of time, it is natural to desire to have pleasant surroundings.  I suggest that you claim a stake at the window with the best view of the outdoors, and place a desk right by, or in front of it.  Don’t be shy to have a friend or family member move the furniture around for you, because sitting in one spot for months deserves the best view in the house!  I find it very important to bring the outdoors in, as much as one can, because we are basically home-bound for most of the day.

If you don’t happen to have a very scenic or charming view, there are a few things I can recommend to improve on that…

Hang a hummingbird feeder or bird-seed feeder outside your window…..P1010175

Or put up some lovely sounding windchimes…..P1010173

Or put a window box with flowers, or some potted plants…P1010176

Or maybe even a couple of friends!!P1010181

Another important thing you will need is a desk.  This is your command center, and you are captain of the ship!  With a desk, all the things you might need during the day are within arms reach; water, snacks, laptop, magazines, etc.  Also, the space is great for doing crafts, or jigsaw puzzles.  I hand paint the vintage purses for my purse line at my desk, as well as numerous other crafts.  It’s important to keep busy and keep our spirits from sinking into depression about our situation, so do not despair, and get to work on those pleasant surroundings!