Archive for October, 2010

CALL FOR STORIES: Do you or a loved one have Charcot Foot?

Believe it or not, I have found Charcot patients in wheel chairs in the grocery store, Office supply places, doctors offices, the bank and been told about others by friends, or relatives. Hopefully, in January, I will be posting a story of a person who has Charcot with a very different story from mine. Some will also tell us a positive account from their experience with Charcot Foot.

I am now asking for your stories, or those of loved ones who have, or been recently diagnosis with Charcot Foot. We need to share our stories as each has similar, but very different experiences. Those of you who have e-mailed me have expressed the need for this and more information.

I am so excited about this site. I am proud to say it is reaching people all over this beautiful world of ours. I want more people to benefit from it. Your stories will help others find answers they are seeking, or act as a support for someone who has Charcot and is going through some of the same things you are or did.

Your comments have made my work here worth every minute. We are being read in over 30 countries around the world and hopefully helping those that have Charcot by giving a ray of hope. We hope to be able to be a support group, to be able to cope with this devastating disease. We hope we can help one find help before Charcot takes its toll on the foot, to be able to keep their feet and be able to walk.

We need storiesPlease e-mail me your story. I am willing to help you edit it. If you have pictures they really help with understanding. Please let us know how you found out you had Charcot. What were your symptoms? How did your feet feel? How did they look? Your pictures would be helpful, but not necessary. Give us the best description you can. I will read your story and offer suggestions, or questions to be answered, if necessary

I am really looking forward to hearing from you. E-mail your stories to: mashaw @ It is a protected web site. If asked to fill out a form please do so. Please reference your subject as Charcot Foot.

Physical Therapy Begins

Soon within a few days, I was able to go back to Madigan. My biggest complaint was being poked by one of the screws near my knee. They determined one of the screws was a bit long and may be giving me trouble. All in all things looked good and were healing nicely. They decided I would need physical therapy. Because I lived in Silverdale, I should do it at the Naval Hospital, but the Navy sent me to a Silverdale location. Madigan doctors also said I could go back to the pool on a limited basis.

This was very different for me as there was no therapy with the Charcot Foot surgery. Because of this, my therapist was a bit hesitant as she didn’t want to create any PB170019problem for my feet. When I first arrived, I was in the wheel chair. I learned to work out on the bike, walk using the railings, stepping up and down using the railings and walking the grape vine. I spent quite a bit of time with jell and heat trying to get a better range of motion for the knee. I worked with her three days a week for several months. My time on the bike increased and other exercises were added. My range of motion increased making everyone happy.
Those at the base gave me some exercises to do in deep water that would help.

I was sent to the Naval hospital for a DEXA (Hip / spine) bone scan. The news wasn’t great. I was told I had Osteoporosis. Obviously, I was given a prescription of calcium and vitamin D. I will have another scan by the end of the year. Unfortunately, the exercises needed for Osteoporosis are weight bearing and not good for the Charcot feet. Not yet anyway.

At the end of therapy, I was walking without help. Since I had fallen before, I was much more causious. Walking up and down stairs is still difficult. Some days are PB170023better than others as I seem to have more confidence. Everyone has helped a great deal whether helping build my self confidence or helping me build strength through the many types of exercises needed. It was decided that the screw in the knee was creating some of my problem. However, a year had to go by before it could be removed. That was done and I can now move my knee without pain and sleep without a pillow between my knees. It has also made walking easier.

This has been a long process, but in the end well worth it. It is great being able to walk nearly normally and not having to use the wheel chair or the electric carts in the stores. They are there. Yes, but only if I need them.

The Challenging Ride Home

Though I was well cared for in the hospital in Gallup, I really wanted to get on the road PA170044home. It hadn’t been cleared for me to go back to Madigan. That was a concern for me. The time finally came to leave the hospital. Walking out was not an option, nor was riding out in a wheel chair. I was placed on a gurney and wheeled to the front of the hospital where the RV was parked. I am sure this was not a common event. In fact, I teased, saying that they put out an all call that they were going to load a lady into an RV. If they weren’t busy, anyone who was able could come watch. I was amazed how many were there to see me off. ( Maybe they were just glad to see me leave.) My nurses, friends and a whole lot of other people were there. I was shocked at how many were inside the RV when I was placed on the couch, my location for the remainder of the trip.

I was confined to the couch. I thought I would be able to at least get up and sit on the potty chair, but I couldn’t get up. I think the main reason was that the couch was too low. I couldn’t get enough leverage to sit up. My position was as if on a lawn chair in order to look out the windows, enjoying the sights when not sleeping and I did a lot of that.
Once home, I couldn’t get out of the RV. I was still stuck on the couch. We were hoping I would be able to go to Madigan where they could take me out. After the check up there, I would be able to get in the wheel chair and transfer to the car as I had done in the past. Unfortunately, I was going to have to stay in the RV for nearly a week longer. I am slightly claustrophobic and the “four walls” were beginning to close in on me. Nearly to the breaking point, Max decided he could drive me to the local hospital and they could take me out.

PA200089Max drove the RV to the emergency entrance. Unfortunately, when he drove under he wiped out our air conditioners and their over head sprinkler system. They didn’t have a low clearance sign. Max was really stressed and so was I. He explained our situation to the attendants as the water poured over the RV. They quickly removed me and headed me in to the examination room. One of the men asked me if my husband was all right. I said I didn’t think so as he was really upset and stressed. They said he just drove off. I said he had planned to go home and get the van to take me home. They went on with my check up and x-rays. All was okay. Max returned and they told him not to worry about the sprinklers, but wanted to know how he was. He kept saying he was okay, but no one believed him.

PA230094Once they released me, I slid into the wheel chair. They followed me to the van and was quite surprised I was able to get in as I had done the past year. I had had plenty of practice. It was great being able to get back into the studio and my routine. The next day the hospital called, not to find out how I was, but to check on Max as they were really worried about him. I thought that was wonderful of them.

Whoops!: Watch That Step

I was really doing well, in fact, I was doing some walking after surgery on both feet. I was even doing some short distances without assistance. No walker, or wheel chair. Max was at my side to make sure I was stable and didn’t fall. I was gaining confidence and enjoyed showing my independence. Maybe, just a bit too much confidence too soon. We had been at our farm in Nebraska and were on our way to California. We stopped to see a friend in Gallup, New Mexico. We had spent several days there and were going to leave on Monday. We went to church with her on Sunday. After church, we went into the fellowship room to visit with everyone.

I decided I needed to go to the bathroom which I saw to my right and down the hall. Max said he would take me there. Unfortunately on the way, he dropped some things and he stopped to pick them up. Independent me decided I could do this on my own. I went ahead of him. One problem, I didn’t see a step leading up to a stairway. I only PA120402saw a short cut to the bathroom. My right foot hit the step. I fell forward. My right leg hit the edge of the step just above my knee. Laying in a crumpled heap, I looked up into the doorway. A man said, “Did you break anything?” I replied, “Yes, my leg. I can’t move it.” He said, ” I know. I’m an orthopedic surgeon and I heard it break. I have already called the ambulance. They will be here in a few minutes. ”

The really cold slab of concrete felt really good. I was fortunate that I didn’t hit my head. In just a few minutes The paramedics were swarming PA120404around me. They slid a large plastic sheet, what made me think of as a spatula, under me and put me on the gurney. I was rushed to the ambulance and they whisk me away across the bumpy parking lot and back street to the hospital only a couple blocks away.

Now for the wait. Unable to move and the pain was beginning to start in. Of course all the x-rays and impossible positions they put you in didn’t help. I was so glad Max was there to comfort me though there were times, I’m sure, he felt nothingPA130417 helped. My friends were with me also I appreciated them though I was in misery. The surgeon came in and told us I wouldn’t have surgery until Monday afternoon as the hardware necessary to repair my leg would have to come in from Albuquerque.

My night was a blur, maybe a good thing. Monday was the longest day of my life. I don’t remember much other than wondering when I was going in for surgery. even when we went in to the room to wait my turn it seemed to take for ever, In fact it was after 5 P.M. before I did go in. I remember waking up in my room.

The day following surgery, I was given a blanket some of the women in the area had made. It was so welcoming and comforting even thoughPA150452 the room was hot and the weather outside was also hot. I stayed there until Friday. Meanwhile they tried to put me through physical therapy. My problem two feet that didn’t handle weight well because of my precious surgeries. This was hard to get them to understand. Max ended up helping me get out of bed and set in a chair and back to bed. The week was also long even though I had lots of company, my friends and many people I really didn’t know. The doctors said I would be released on Friday.

That meant, Max needed to call our son and have him fly to Albuquerque on Thursday evening to help him drive back home.