Archive for November, 2010
Happy Thanksgiving! This is the time of the year set aside to give thanks for blessings that have been bestowed upon us. Though being diagnosed with Charcot Foot was a shock to hear, the entire process from diagnosis, through surgery and recovery consuming three years resulted in a very positive experience. I am so thankful for all of you who have touched my life. I am very thankful I am now able to walk because of a very skilled surgeon, Dr. Thomas Roukis and a wonderful husband, son and support group.
My husband took on the role of caregiver. We had been quite close before, but relatively independent. Suddenly, I relied on him for everything. I didn’t really like this feeling, but he did a great job. Many had given him the impression he wouldn’t be able to do this. We planned together which helped make it work for both of us.
My son was there whenever we needed him. I think it was a bit tough to see mom unable to do the usual things and to think she was getting old and confined to a bed. His presence and strange sense of humor (my description not his) was always welcome. His sensitivity and caring makes a mom think she did all right.
My friends, neighbors near and far were wonderful. They sent greetings, made many phone calls, and email filled with good wishes, love, prayers and humor. They made my many weeks move more quickly and gave me hope and encouragement.
The pool was a therapeutic blessing. Those that worked the pool were wonderful as they helped my husband with the lift to put me in and take me out of the deep water. They helped me with exercises to build strength.
Strangers, people I met when in the wheel chair, would stop me and ask me what my problem was. Rarely did I find someone who knew what Charcot was. This gave me a chance to teach. They were kind and encouraging. They showed so much interest in what I had to say. Many were unbelievably helpful when in a restaurant. In fact, because of the way we were treated, we became very regular customers in some places. Being out and about was important for us. I love the arts so a good friend of ours arranged to have us located in a wheel chair friendly part of our local theatre. The 5th Ave theatre in Seattle also made special accommodations for us. The Casino that we enjoy was more than helpful. People are so wonderful and gracious. I’m blessed to have met them.
My faith seems to pull me through showing me the good in people and life. As a farm kid, I often left the house at night, climbed on my horse bareback and rode around the corral looking at the stars and talking to God. I enjoy going back to my home church in Nebraska. The people there are still family though none of them are actual relatives. They have kept us on their prayer list and sent us cards and little gifts throughout the years, a very comforting feeling. Unfortunately, I can’t say the same for the church family we have here.
We met a very special lady who lives in Moscow, Russia prior to my surgery. She is now 80 years young. During my hospital stay, she spent several hours standing in a Russian Orthodox Church praying for my recovery. The Thursday morning before my dismissal I looked out my hospital window and awed at the lovely pink clouds around Mt. Rainier. Once home, I called her daughter and told her about this beautiful sight. She told me of her mothers prayers and she was sending me a sign in pink. We both started crying.
I am so thankful for my healing and being able to walk again, but mostly for those I have met along the way and these experiences.
We are certainly thankful for all the positive comments and the donations that have come to Charcot Awareness Education Foundation at this time. Our foundation was back dated as a 501 (c) (3) non profit to July of 2008. We received that word in 2009 and began work on a web site which went live February 4, 2010. This came about because of a lot of volunteer time from our son. Since my husband and I were solely responsible for the foundation, we used and are still using our personal computer and printer. We had to purchase a new printer as the old one was no longer able to do the work we needed done. We designed a brochure and business cards to further inform and educate the public about this devastating disease. I designed the materials and Max used the computer to complete the projects. Our funding came from our own income as donations were not enough to cover the expenses.
Asking for money has always been hard for me, but we are getting better. Those we have approached for monetary help have been wonderful. We have been able to fund some large visuals for our presentations and are now working toward enough money to have 5000 brochures printed and costs to be able to set a couple of conferences to spread awareness. It would be wonderful to get enough money to be able to buy a good computer system for the foundation and eventually rent an office to do business in.
In order to continue this endeavor, we are asking for your help. If you would like to help us continue getting the word out, we would appreciate any donation you feel you could contribute. We are so proud to hear from so many of you from around the world. It is wonderful reading comments from those we have helped. Hopefully, those of you who have Charcot Foot or surgery because of it will be willing to share your stories with us.
Please send your donations to:
Charcot Awareness Education Foundation
P. O. Box 3902
Silverdale, WA 98383-3902.
Thank you so very much.
I just returned from doing a presentation at the Naval Hospital for a group of diabetics interested in improving their health and finding out new information. They were delightful. I really enjoy sharing my story and that of others with Charcot Foot. This group was very interested in finding a medical professional that really knew the problems of the foot and were interested in helping them with their problem. They needed to know how to get referred to the right doctor. Would it be a Podiatrist, DPM, an orthotics specialist, an orthopedist, a foot and ankle surgeon, DPM, FACFAS, or someone else qualified? Any one of these people can help.
One thing we discussed was how do you get your feet healthy and get rid of the calluses. In my instance, it was keeping the foot clean and use a good moisturizing healing skin cream which can be recommended or prescribed by a doctor, but not necessarily. Being sent to an orthopedist to have custom orthotics made to take the pressure off the area on the foot that is callused really helped me in the beginning. The “custom” orthotics that are sold at the local fair is not really custom. They may give temporary relief, but you probably need a true custom orthotic. “One size fits all” does not work in this instance. The orthotics specialist can cut and paste to ease the pressure on the callused area to provide the foot with comfort when walking thus stopping the callus from developing.
Getting the word out about Charcot Foot, educating people about Charcot and its devastating effects, the possibilities available to help one with the disease and to know about various pieces of equipment that one experiences with the disease including a prosthesis because of an amputation is what our foundation is all about.
I am so proud of what we have done since we really became active in February. We began the web site and are now around the world with over 40,000 hits. Many have taken the time to give us encouraging comments. Many said we have encouraged them, even given them a recourse for a college paper. We want to be a support. We met with and presented to individuals, small groups and relatively large groups. We have set a booth at Senior Conferences. We created and handed out our brochures in 15 states. We want everyone to know about this devastating disease so that those with Charcot Foot can keep their feet and not end up with an amputation.
Since I was diagnosed with Charcot Foot, I have marveled at my findings. Those in the medical field that do, or do not seem to know about Charcot Foot. I have found those with experience in fitting people with orthotics or prosthetics seem to be able to identify those with Charcot Foot best. They probably won’t tell you what the disease is, but will refer you to a Doctor or clinic that will.
I, like many I have talked to, had no idea when diagnosed with Charcot had any idea what it was. The first response was shocked silence, then “And that is what?” The explanation I received was that is was a bone deterioration disease. Nothing could really be done to stop it. No pills and surgery wasn’t recommended. Since I had the pain, discomfort and deformity coming on, and Neuropathy masked much of the problem, I didn’t really think it was too serious. I guess you could say I was in denial, but not completely as I had my husband Max research Charcot on the computer. We found very little information. Just enough to have a doctor refer us to the limb preservation clinic at Madigan where the man who fitted me with my orthotics had said I needed to go months earlier.
Over the past, nearly, four years I have learned a number of things positive and negative. There is help out there for those with this devastating disease. Your best bet is to find a good foot and ankle surgeon. If you are a diabetic, using corticosteriods, or an alcoholic, these are the top three diseases that accompany and expedite this malady. You really need to talk with your doctor and get those under control so your health is stable.
Others, I have talked to, were told by their doctors the amputation is easier to deal with than the recovery time from an operation to repair or rebuild the foot. They were also told surgery won’t work. Since my surgery in 2006, I feel so much better and am able to walk. I know of another Charcot patient who had surgery 25 years ago and he walks well. Some of the specialists would rather cut toe nails in the “old folks” home than use their skills and training to help the Charcot patient have a better quality of life. Statistics say there are approximately three million diabetics in the USA alone that have Charcot Foot and aren’t being diagnosed and will loose their feet to amputation. Amputees can still walk, but the majority of those I have met with Charcot use a wheel chair because it is easier than learning to walk with the prosthesis. Most are over 60 years old and not flexible as a younger person.
Your feet are so important to your independence. Charcot Foot results in a severely deformed and disabling foot that is difficult to shoe and brace properly. You could have recurrent infections and ulcerations with a final result amputation. Check your feet daily, note any changes and keep them healthy. Contact a Charcot knowledgeable professional if these things happen.