Archive for February, 2016

A Support Group. . . Charcot’s Best Medicine

Untitled-1Cards, letters, flowers, gifts and phone calls, as well as, visits really made a difference in my Charcot surgery recovery and improvement. This is really emotional for me as the out pouring of love, caring and help was overwhelming. It was always wonderful to see a friend appear at the studio where I was recuperating. Just having them come was enough, but they usually brought someone with them, or they brought food, flowers, cards and gifts.

I was usually in good spirits, just not able to move as my leg was elevated and iced for 20 minutes of each hour. I’ve never been great company for myself. I love to chat and everyone patiently listened to my story. I never ever wanted to be a person that talked about my ailments as I thought older people should have other things to talk about beside their health. I’ve kept that attitude, but only as part of the picture.

Because of our lawyer and the fact that we found very little information about Charcot Foot and knowing there were many that have this disease that aren’t diagnosed, there was a need to talk about it. I found my teaching skills were still needed and that there was a definite interest and need to inform. I ended up contacting our local newspaper to find someone in the medical section I could talk to concerning Charcot Foot. Instead the editor ask questions and decided to have a reporter come to my studio and do an article about me and the disease Charcot. This was really enlightening for me. P9080002The phone was a life line, as calls came in from every where, and I was able to call out. We, my friends and I, talked about everything. This really helped me keep positive and informed about the happenings in their lives. I didn’t think so much about my inability to walk and go back to the pool for water aerobics. This was a big part of my social world. This group really went above and beyond to help us. They loaned us the wheel chair (I used it nearly three years) and the potty chair another necessity.

Max even took me to the Pool just to say hello to everyone. That boosted my morale as we talked, laughed and teased. I really missed the water and was anxious to return.

Through all of this, the power of prayer was evident. My home church in aP3130005 very small rural town in Nebraska put us on their prayer list. Tears came to my eyes when I told about looking out of my hospital window early one morning. Pink clouds were surrounding Mt. Rainier and whispy pink clouds floated above. A good friend of ours in Texas told me her mother, 77, had prayed for hours for my healing in the Russian Orthodox Church in Moscow, Russia. She sent me a sign in her prayers. It would be in “pink”. She was a very precious lady to me. Her name was Lena. My support group will never know what a very truly important part they played in my healing and recovery. Definitely my best medicine!

This weeks article was contributed Founder Annita Shaw
Brought to you by Charcot Awareness Education Foundation

Listen To The Story Your Feet Are Telling You

2/18/2016 Listen To The Story Your Feet Are Telling You

When I first learned I hadCharcot Foot, I was instructed toP5260022 copyget my feet healthy. I had calluses, but no open wounds, though I did have a sore toe which we learned was infected. I had to work at getting my feet healthy keeping them clean, dry and soft. I used lotions morning and night spending a lot of time caring for my feet. Soon they were soft, no cracked heels and feeling much better. My feet had begun to deform, hammer toes and a small bulge on the inside of my right foot was showing.

However, when talking with Bonnie, she didn’t have the ulcers, calluses or deformities. Yet, she had the same pain and difficulty walking that I did. She had taken better care of her feet. Apparently, the destruction was internal, inside her foot. The bones were deteriorating and becoming weak. Thus the broken bone that came through the bottom of her foot one morning led to the amputation.

None-the-less, foot care is really important. At my appointments with my podiatrist. I have him check my feet and trim my toenails because I managed to cut the end of one of my toes off several years ago because I could not feel the end of my toe. Seeing the blood gush from my toe convinced me I should not try this again. P2170016Plus the nails were getting thick and hard to cut. Anyway, I told him the end of my big toe was hurting some this past week. He said my toenail was growing in such a way that I was getting an infection. That, I definitely did not want to hear. Fortunately, after he worked on my nail, it felt much better. I think it was rubbing on the inside of the shoe which didn’t help.

My next step, now, will be to go to the orthotics clinic. I had noticed a small callus starting on the ball of the left foot. He trimmed some of the callus away. The podiatrist gave me a prescription to get new orthotics. They now give me new orthotics two times a year. More often if I have trouble walking, or my foot seems to be turning, I see the podiatrist every three months, or sooner if necessary. After the appointment, he said my feet were stable. This was good to hear, as I am doing more walking and exercising.

From what I can tell, most of us that have had, or do have foot problems wait too long to seek help. When we do, the person we go to often doesn’t have the knowledge about the problem, such as Charcot Foot. Then the out come is the fact we are so bad that amputation is often the result. They find it is easy to blame your weight if you are over weight. Then tell you, you need to loose weight, or diagnosis you with something that has similar symptoms such as arthritis.

Please use common sense and find the knowledgeable provider. Seek medical help as soon as a foot problem develops. Do not wait until you have to go emergency or urgent care for treatment. A second opinion is usually a good idea. Recently, I met a man who has restless leg syndrome who was told those with restless leg syndrome don’t have Charcot Foot. His second opinion said he had Charcot. He followed this doctors procedure and avoided amputation. All of the diseases Charcot is associated with have perpherial neuropathy which ultimately causes Charcot Foot Deformity.

Donations are Welcome: Join the team to educate, helping those with Charcot avoid amputation. Thanks for caring. Send donations to:
Charcot Awareness Education Foundation
P.O. Box 3902
Silverdale, WA 98383-3902

This weeks article was contributed by Founder Annita Shaw
Brought to you by Charcot Awareness Education Foundation

Successful Mardi Gras Event For Charcot

2/11/2016 Successful Mardi Gras Event For Charcot

We are just starting our sixth year and are finding if we are really going to make this nonprofit foundation strong and achieve the mission we need to reach out and put forth more effort to get the money and man-power to help it help the millions of people with Charcot.

Viewing area for floats prior to Fat Tuesday

Viewing area for floats prior to Fat Tuesday

Our local casino gives us that opportunity by selecting 20 nonprofits in Kitsap County. They can apply to create a float representing their organization using the Mardi Gras theme. Floats are on display for two weeks, or so before Mardi Gras.
Annita Shaw viewing the butterflies

Annita Shaw viewing the butterflies

The date the floats parade in front of judges and after the points are tallied they select the first, second and third place winners and a Queen or King selected from the casino players to lead the parade is given $500 to lead the parade plus $500 for them to give to their favorite float and charity.

There were some wonderfully done floats this year. Better than last. Lisa, who organizes the event, used the new event center for the occasion. The floats paraded through the casino. Down the long hall to the events center and were placed in numerical order around the outside of the room.

Waiting to go before the judges

Waiting to go before the judges

There were two rows of seats, in a horseshoe formation for the audience. which filled quickly. The judges sat on an elevated platform in front of the room. However, prior to judging, the judges went around to each of the floats and talked with us concerning the float and foundation (prejudging). What a new and great idea. When the top three winners were announced they came to the front. The representative of each foundation stood on the platform such as is done at the Olympics. It was a fun classy event. Everyone cheered for their own float. We didn’t bring an audience, but it didn’t seem to make a difference as everyone clapped and cheered for us all the way around the area giving us tremendous support and a feeling of belonging. (We are a very new foundation compared to most of them.) It actually brought tears to my eyes everyone was so wonderful.

Prior to the top three winners being announced, the moderator announced Charcot Awareness Education Foundation as the Queen’s choice to give the $500 to. I was so shocked and so honored to receive this very special award. The money will help us as we want to find out how much it costs to have individuals diagnosed with Charcot Foot Deformity and we want to publish a book of peoples stories about their experience with Charcot, whether they had a procedure that allowed them to walk again, or that they became an amputee and the struggles they have had with that.

After having been viewed by the judges and audience  in the viewing parade

After having been viewed by the judges and audience in the viewing parade


Thanks to PME and the Clearwater Casino for giving nonprofits the opportunity to let the public know what nonprofits do and to help them with their mission.

Donations are Welcome: Join the team to educate, helping those with Charcot avoid amputation. Thanks for caring. Send donations to:
Charcot Awareness Education Foundation
P.O. Box 3902
Silverdale, WA 98383-3902

This weeks article was contributed by Founder Annita Shaw
Brought to you by Charcot Awareness Education Foundation

Charcot Symptoms and Foot Care

2/4/16 Charcot Symptoms and Foot Care

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 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 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 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.

Donations are Welcome: Join the team to educate helping those with Charcot avoid amputation. Thanks for caring. Send donations to:
Charcot Awareness Education Foundation
P.O. Box 3902
Silverdale, WA 98383-3902

This weeks article was contributed by Founder Annita Shaw
Brought to you by Charcot Awareness Education Foundation