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Patient discussion about Charcot's disease
Q. Does anyone suffer with Charcot disease of bilateal feet? Any suggestions you may have w/ treatment? Thanks! I was diagnosed with Charcot about 2 years ago but did not believe I had same at that time. After going thru many medical issues with my husband and myself, this was put on the back burner, so to speak, until other items could be addressed. I am mostly confined to a wheelchair now and find it best off, for now, to wear those "Croc RX" shoes (maybe around $40) and also inserts inside the Croc shoes. Initially I was just buying the inserts, but as the bones collapsed further, with the bone on the right foot actually coming through the bottom of the right foot, I had some made which were made of a more soft, pliable material. Luckily for me, I have access to a person who makes them or else I would not be able to afford them; they are so expensive and often times not worth your money. Do not let people talk you into buying inserts until you talk with others or else you will be, like I was initially, just out hundreds of dollars. I did find a few websites whereby I was able to order shoes with larger toe room and heel room to accommodate the inserts better, another issue you have to think of. YOu just cannot stick inserts into shoes like you used to wear, it will no longer work that way. I would love to share any helpful hints, suggestions, and also hear from others. AS a medical transcriptionist for many years, I HAD typed the term before, just was not familiar with the ravages it can cause and the misunderstanding of friends and family members. Also, I have these grandchildren whom I would die for and my one wish in the whole world is to take them to Disneyland and just watch them for a day HAVE FUN! I have an older electric scooter but cannot yet bring myself to use it inside the house...our home is not that large anyway and certainly -- as I have found out the hard way! -- NOT HANDICAPPED FRIENDLY! I have not driven a car since Oct of 07 and I worked for nearly 18 years or so at a hospital in Apple Valley, California, and I miss working so much. If it were not for my sense of humor, my drive, my being a military wife (husband retired U.S. Army), my good friends and good family and, this part SHOULD have gone first!, my faith in God and in Jesus Christ, I do not know how I would have reached this point. I know EVERYONE is having problems...even the billionaires (and yes, I can feel sorry for them too). We are ALL in this together and to just love one another and help one another should be EVERYONE's top goal. I am certainly no saint here...still love to joke around and if it were not for the pain meds, I might even have a beer once in a while, but I want to do what is right and I want my legs back! I am also interested to know if anyone knows anything at all regarding stem cell research...I heard in N. California they are beginning some type of stem cell research plan for spinal cord injuries on human volunteers - ones I believe who have perhaps lost the use of their legs - so I would be greatly interested in knowing more about this aspect as well. Thanks for reading this and thanks in advance for any and all information, websites, names of other individuals, anything in order to help educate myself, and others, regarding Charcot disease. God bless all of you reading this and may all your own aches and pains be small ones! Blessings your way always - Barbara
what i do know is that there's the "Charcot-Marie-Tooth Association" which have a very good site with the latest news and even a big database project that you may participate and help find a cure to that horrible disease.
thanks so much!!