Archive for January, 2014

A Hug From The Heart

Each of the people I have been able to talk with, or correspond with, over the past five or so years have very interesting stories each very unique to the others and I hope to share more of them in the upcoming years. I want to share the story of a young 10 year old who has Charcot, of a man who his having a great deal of difficulty getting help, of a lady who is in deep depression, of a man who lost his battle with Charcot. Hopefully, these will all give you an insight on this devastating disease and hope that if diagnosed early a quality life.

But first:

Let me reintroduce you to Bonnie. We should have known each other a long time before we actually met since we grew up the same area. We were both farm kids. We went to high P7310525schools about 14 miles apart. Anyway, after my Charcot surgery we were in Gering, NE at a bank where we both do business. Max and I were explaining Charcot to one of the bankers when she said, she thought she knew someone who had the same thing. She was in a wheel chair and was an amputee. She eventually got Bonnies’ info to me. I called her and we went to her home to visit and we have been good friends since.

Bonnie is a delightfully warm individual. Her personal story will be informative and interesting. I am so proud of Bonnie. I can’t believe she lives by herself, has a wonderful support group, and does what she does. And, oh, yes, has a buddy, Tuk.

Her story will begin next week.

Annita’s, (Founder), continuing story

Brought to you by Charcot Awareness Education Foundation

A Gift Of Healing

When one looks back over the years and you think about those things that impacted your life several things come to my mind. In 2007 after surgery during my first visit with Dr. Roukis, I remember his turning to my husband, Max, and say “Do you smoke?” Of course the answer was yes. Max had smoked most of his life. When he retired from the Navy, he was smoking four packs a day. He decided then we probably couldn’t afford that much of an expense and decided to switch to the pipe.

I was glad he did that, but I really wanted him to quit completely. I chose not to bug him about it however. He did choose to smoke some really good smelling tobacco and it never ceased to amaze me how many women told him how nice it smelled and asked what it was. I always felt this was encouraging him to continue to smoke.

Dr. Roukis went on to say he really didn’t care if he smoked. “BUT you won’t smoke around her!” he said. We were both quite surprised and wanted to know why? He was very clear about the fact that I was a diabetic and diabetics don’t have a good history of healing well, or quickly. He said the smoke makes it even harder for one to heal. If Max chose to smoke he could do it outside and away from me, but not around me at all. Max agreed to do that.

However, on our way home he lit the pipe as soon as the traffic grew heavy. After some time, I realized that when he drove, he was stressed and the smoking began. What was bad about that was the fact I sat behind him and even though he usually had the window open, the smoke found its way to me. He really tried his best, but it was really hard for him. When at home it wasn’t too bad. He didn’t smoke in the studio at all. He did smoke while he worked on his computer and outside.

On our next trip, 2008, to the farm in Nebraska, he was realizing it was harder to breathe at the higher altitude. He began to smoke less. Since we were living in the RV, he had to go outside to smoke. He decided he would quit smoking all together. Once home, he did just that. He said this was easier than quitting cigarettes. He used cinnamon disk candy to help him quit. He did gain some weight which he has started to loose now. We also try to exercise four or five days a week. He works in the gym and I exercise in the deep water pool.Max in chair

Unfortunately, the smoking did damage after all those years and he is now on oxygen at night and during the day as necessary It is now 2014 and Max has been going to Pulmonary Rehab to exercise, build stamina, and learn to breathe correctly. During these classes and the Better Breathers Club, I have met more with diabetes and .those with foot problems.

My healing went well. It was even a bit ahead of schedule. I am very thankful for Max’s commitment and stopping smoking, as I believe we will have many more years together. Hopefully, we will be able to help others conquer their fears and fill some of their dreams. His gift to me, though not a lavish one, certainly holds a great deal more than money can buy. It was sent from the heart with love.

May this new year take away the silent shadows in your world.

Annita’s, (Founder), continuing story

Brought to you by Charcot Awareness Education Foundation

Let’s Take Another Look At Charcot Foot

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.

Symptoms of CharcotI, like many I have talked to, had no idea when diagnosed with Charcot Foot 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 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 Foot Care 2than the recovery time from an operation to repair or rebuild the foot. They were also told surgery won’t work. Since my surgery in 2007, 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 being amputation. Check your feet daily, note any changes and keep them clean and free of callus and sores in other words, healthy. Contact a Charcot knowledgeable professional if these things happen.

Annita Shaw – Founder

Brought to you by Charcot Awareness Education Foundation

DEPRESSION

Soon I am going to revisit Bonnie’s story. Her’s is very different from mine though we both have Charcot Foot. Even though, we grew up in Nebraska only a few miles apart, attended different high schools, so never knew each other. I ended up in Washington state and she in Alaska. Finally, a few years ago, a mutual friend thought we might have the same disease asked us each queastions and introduced us. We bothd had Charcot Foot and have been good friends since.

Bonnie commented on the dark days of Alaska in the fall and winter while she was trying to heal her Charcot Foot. She speaks of not remembering things and how depressed she was. She really enjoyed the sun. Having grown up in NE, I could understand her feelings. I was fortunate in that I could decide when to have my surgery. Max and I both felt having it during the summer was best. Everyone else felt we should do it in the fall or winter. I didn’t want Max to have to deal with icy or snow covered roads or pushing me in the wheel chair in our rainy weather conditions.. I was going to stay in my studio and I just knew I would be happier if I would be able to have the doors open and enjoy the lovely summer. Bonnie, like others, didn’t have a choice about when to have surgery.

Mid Februaryof 2011, I discovered an article on depression in the Star-Herald from Scottsbluff, NE written by Nicole Vidlak, a licensed clinical psychologist and contributing writer. Her focus was primarily on heart disease. She referenced Johns Hopkins University in Baltimore, MD. She listed nine physical effects which I have blocked out here for you to read.
Depression notes

It was mentioned that individuals who are depressed may have difficulty taking some medications they need for their treatment. It seems Chronically-elevated levels of stress hormones common in depression can have negative effects. One who seeks mental health treatment for depression can make a positive impact on their over all health.

Upon further research we discovered a power point presentation by Terrence Sheehan, MD Chief Medical officer and Director of Amputee Rehabilitation Program at Adventist Rehabilitation Hospital in Rockville, Maryland. Though his topic was Physical Issues Following Limb Loss: Adapting in the Context of a Natural Disaster. It had some statistics and information very relevant to anyone and especially someone with diabetes.

These are really eye opening. Depressing? Statisticsurgent care and end up having my foot amputated.

At my last podiatrist appointment, he commented he hadn’t had any new Charcot
patients and was kinda surprised. His nurse, however, may have hit on the answer. She said most go to emergency or during to have the limb amputated because they went for help too late. If they had gone to a knowledgeable podiatrist when they first had foot problems and had been diagnosed correctly they could have avoided amputation.

If you feel you may be depressed, please seek professional help.

Annita Shaw, Founder

Brought to you by Chaarcot Awareness Education Fooundation

Charcot Awareness Education Foundation: A Year In Review

HAPPY NEW YEAR

P1010012 copy2010 began with many hours working to find a theme for a website. Thanks to our son, Justin, we were able to work throught the process. This also meant coordinating business cards and stationery. Then February 4th came and the first article was to be posted. I was a nervous wreck. It was viewed by 2,866. I was pleased. Now, December we have been viewed by 53,078. It is exciting to know it is viewed by people in nations around the world. We really hope we are able to help everyone understand more about Charcot Foot and seek a solution to this devastating foot problem.

This was the way we began in 2010, now one day into 2014 I’m more confident and even more excited about this foundations purpose. Since we began, we are at 1,300,000 hits. We are no longer one of a few talking about Charcot Foot, or writing about it. We have talked to, and helped many by answering their questions. We have handed out thousands of information brochures and talked top individuals and groups about Charcot. ?because of your questions posed to you doctors or poditrists there is much more information available.

We have revisited my own personal story of my experience with Charcot Foot. My husband and I have sat an Older Americans Conference to let people get more information. We have handed out many, many brochures, nearly everywhere we go. They have been handed out in most states this side of the Mississippi River. We appreciate the positive and constructive comments. It is rewarding to hear the site has been of research value. A special THANKS to those of you who have contributed to help us further our Charcot Foot Awareness Education goals.

We are happy to have Boni join our Board and we have met with her the past two years for stradgic planning.

Because of questions continually asked, There is a need to repeat some of our most popular postings. We hope they will be of interest and help to you. We also plan to repeat Boni’s story. We are woking on two other individual storues that will give you another perspective on this devasting disease. Boni’s story on Charcot Foot explains what can happen with Charot Foot and what it is like to live with an amputation.

May 2014 bring health and happiness your way. Let answers to your questions come to you. May your quality of life improve.

Message from founder Annita Shaw

Brought to you by Charcot Awareness Education Foundation