Archive for June, 2014

Starting Life As A Charcot Amputee

Being home from the hospital was certainly a welcome change. Learning how to take care of myself and daily challenges certainly filled my days.

I had started having “phantom pain” in my stump and believe me they are so real, you know it’s your big toe sending you a message, only to look down and see there is nothing there. Sometimes it’s just a feeling, but other times very painful. It was suggested I try Vitamin B6 when I experienced phantom pain, or nerve pain. It has not stopped the pain, but cuts down the times I get severe pain in my stump and also my right foot.

Speaking of my right foot (good one), I was using it big time as basis for holding my body up when standing, walking, sitting and transferring. Well, with all that use I began to feel discomfort in my right foot, but just figured I was building up muscles and strength. I was not to concerned at the time. The middle of June, I had an appointment with surgeon, Dr. Chang, to see how the stump was healing on left leg. I also wanted to know how my skin was reacting to wearing a prosthesis all day. Do not wear it at night time. During the check up I told Dr. Chang of the discomfort in right my foot.

P7210196 copy He immediately sent me for an x-ray and the x-ray confirmed I had Charcot in my right foot, as well. I was shocked, scared, mad all once and started crying. I did not want to relive the last five months. My response to Doc. Chang was to go ahead and amputate and not to wait till pain was unbearable, or a bone in my foot broke. Doctor Chang informed me, he would not do the surgery as I could have many years of use from my right foot if taken care of properly.

The biggest thing to taking care of it was wearing a “claw boot” religiously, except to bed. Doc Chang set up an appointment with prosthesis guy, Trevor Munger, (who did my left foot prosthesis). Within a week, I had the new claw boot. Now, back to learning a new way to walk. I felt super clumsy again so body on alert to be careful and plan my steps. What a fashion statement I make, prosthesis on left (color of skin, fawn color) my first claw boot (black). It’s funny, actually, as in the big scheme of things who cares what I look like. The two help me to function and do many things. The claw boot has performed beautifully.
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I was diagnosed with Charcot in my right foot 7 years ago and claw boot has kept my foot formed correctly and doing well at this time. Another blessing. I cannot walk with walker much anymore as my right foot will get pretty severe pain in it. So, I am confined to a wheel chair. This new development took awhile to get used to, but I did a lot of praying for acceptance and to get on with life.

Bonnie’s continuing story.

Charcot Awareness Education Foundation

Another Angel Enters My Life

Being home after a four month stay in the hospital was so wonderful, but the challenges were many. One of the biggest was learning to take care of myself. Each day I would have new challenges and successes. Getting up and down from a sitting position, walking with the prosthesis/walker on carpet. I was always afraid I would fall. Giving thanks to God for every successful task completed and praying for guidance, safety and discernment as well as, giving God all the Glory for each day. Tony was still working his two jobs, so I was home alone a lot, but he called many times throughout the day to make sure I was “OK. ”

Tony was the owner/operator of a pick up delivery vehicle similar to UPS or FEDEX, delivering large and small items all over town. He did daily pick up and deliveries for the State of Alaska departments. While at one of these buildings, he got to talking to one of the new employees. In their conversation learned that she had just recently transferred from Juneau, AK to Anchorage and was looking for a place to live. Tony asked her where she was living and she replied, “in my car”.

Tony went on about his pick up and deliveries and kept thinking about how we could help her. He then called me and told me about meeting this woman. He said, “You know she could help us by just being in the house with you in case anything would happen to you, and she would have a place to sleep and a somewhat private peaceful place to live.”

Sounded like an excellent idea to me. I knew this would relieve Tony’s mind while he was working. The next morning, when he arrived at the office building he introduced himself. She said her name was Bonnie J. He knew right away this was a good thing. She had the same name as mine.

He made arrangements for Bonnie #2 to meet with me that day at our home and as he put it to “check each other out.” I have to admit it would be strange meeting someone for the first time and then have them move into our home for an unknown time frame. Long story short Tony told her we had a huge extra bedroom / bath and he needed help with me. If she met with me and things worked out, we could help each other.

Having done a lot of hiring of employees during my airline career, I was not afraid of visiting with Bonnie #2. I met Bonnie that afternoon. We had a wonderful two hour visit. She checked out the extra bedroom and bath. She was very happy with them. We were just looking for someone to be in our home in case I would fall, or something. We were NOT looking for a care giver. She said she would be happy to live with us.

Bonnie #2 became an instant part of our family – and, oh how Tony and I have tested that friendship. This was instant relief for Tony, not having to worry about me. Bonnie worked the graveyard shift, so would be home during the day when Tony was working. She was such a comfort for both of us during Tony’s bout with pancreatic cancer. And later helping me move to Nebraska in 2006. She now lives in Juneau, AK. We are still the best of friends and she is one of my Angels from heaven.

charcotawareness.org“.

Bonies’ continuing story

Hospital Visit April 2011

This article is getting away from my Charcot story of 2004, but do feel I need to let our readers know that not much has changed in the knowledge of the medical profession knowing about “CHARCOT“.

Just recently, I was in the hospital for a very bad gastorial virus and very dehydrated. I had gone to emergency because of pain also in gall bladder area. After testing I was placed in the hospital to receive antibiotics and fluids. The admitting physician also felt my gall bladder needed to be removed. I was asked why my left leg was amputated and why I was wearing a “claw boot” on my right leg. When I told the emergency room staff it was a disease called “Charot“, they had no idea what I was talking about. Even though I was in pain I enlightened them some what – I hope.

After being placed in a hospital room and aids helping me to get into bed, removing prosthesis and claw boot. I was being asked about my condition and what happened to my legs, NOT ONE OF THEM KNEW OR HAD EVEN HEARD THE WORD!!!! CHARCOT. Needless to say, this didn’t make me feel very comfortable, but life goes on. So as I got a little stronger and nurses would come in I would ask if they knew or had heard of “Charcot” – not one of them knew, but while I was in the hospital for 4 days, one of the nurses told me she had looked up Charcot and also read the web site created by Annita. So I felt good about that, at least she was curious.

My stay in the hospital was not a very happy experience – I did get rid of the gastorial virus a definite plus. However, the removal of the gallbladder did not happen. All I can say is anyone seeing a doctor, or in a hospital needs to have a person close to them monitoring every thing being said, or done to you. the patient.

I am doing well and recovered nicely – so end result is very positive. I had an appointment with my Podiatrist (normal check up of right foot), I told him of my recent illness/hospital stay and no one I had asked in the medical field had heard of Charcot. His reply to me was astonishing, he says nothing has really changed in medical knowledge or training regarding Charcot. The medical professions theory is it is not life threatening to loose a limb. Patients will survive and have a life. He said that is true. However, because of life changes being an amputee, very probably being in a wheel chair and the definite possibility of loosing both feet/legs, a patient becomes sedentary. Because of this, more life threatening problems occur affecting heart/lungs etc.

Max and Annita have taken on a huge endeavor of “The Charcot Awareness Education Foundation“. It is amazing how many people around the world are reading the web site. We have to do more. I can’t tell you how many people I see daily having problems walking and in obvious pain, who do not know about the medical profession of “Podiatry”. And that this is the only physician, in many cases, that can diagnose the disease correctly, or help them get treated correctly, before its to late. If I am able to start a conversation with someone who seems to have a problem, they will tell me, “My doctor says its age, arthritis, poor blood circulation and they are being treated”. (?) All I can do is pray for them that somehow they will start asking more questions – I didn’t till it was too late, hence the amputation. We must gently advise them to see a foot doctor (podiatrist or foot and ankle specialist) as soon as possible, and check out “charcotawareness.org“.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Finally Going Home – Sharon’s Surprise

The last few weeks found me getting stronger, for hopefully, the trip home on May 4th. I was getting used to walking with the prosthesis and walker. Of course learning to maneuver stairs as our condo had three flights of stairs. A hard thing was learning how to get up from the floor if I should fall. Rehab assistants helped me get to the floor then I was to try to get up. Not easy and could not do it without assistance. They said this was normal. They were trying to impress on me that I needed to be very cautious in what I do. I should plan in my mind how to complete each task. I can honestly say that in the last seven years since surgery I have only fallen once. That was moving from one stair climber to the other. ( A major blessing from Heaven)

Repairs were being made at home so I could move around. The master bedroom bathroom had the tub removed and a shower put in along with a handicapped stool to sit on while showering. They installed a guard to hold onto while maneuvering to sit on the camode. The main floor bathroom had a higher camode placed in it plus the guard to hold on to. A hospital bed was also put on the main floor which was the living room, kitchen, dining areas and bathroom. This is where I would live pretty much for quite some time.
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The biggest item needed was the Stair Climber (Glider) to get from the garage (20 steps) to the living area which had not been found. However, Sharon’s surprise was that monies collected by the Airline Industry friends had totaled $ 1,500.00 for help in purchasing a stair climber. I was so shocked and grateful for such truly wonderful friends and family who also contributed some of those funds. God is so Great!!!

The target date May 4th came and went, but by May 5th, I was released from the hospital. What a superb feeling, but I was also terrified at how I was going to be able to function in a three story Condo. Two Rehab nurses accompanied us home and assisted in helping me to climb the twenty steps to the living room. What a challenge! It took a while, but we made it with no mishaps. Tony holding me on one side and a rehab assistant behind and one in front of me. What a heart warming feeling to be in my home again.

So after instructions from rehab, one of which was to immediately call to get a life line alert installed in our home, in case I fell and was home alone. We called for one that day and I recommend this to anyone with health issues or living alone. Praise the Lord, I have not had to use the life line assistance, but it does give one peace of mind that assistance is just a push of a button away.

So began my life as an amputee/wheel chair individual on my own. Like I said a terrifying feeling, but so happy to be home. Afraid to make a move from my recliner for fear I would fall, but each time walking with the walker to the bathroom, kitchen, recliner got easier. I was getting stronger every day and got into my daily routine.

It was probably home a week or more before Tony attempted to get me up to the master bathroom for a shower. There were two sets of eight steps with a landing to rest for a bit. I would get tired after just a few steps so this took a while. “Man Oh Man” did that first shower feel great. There were times when maneuvering stairs that I would sit on the steps and slide down one by one. Just picturing this would be quite a comical “U – Tube” feature. (Believe me not comical) Things settled more into a routine, but managing the stairs was always the big challenge.

By the end of May, Sharon had found a stair climber for stairs from the garage to the living room. Stair climbers are not cheap, but we found a used one and had it installed. Wow! what a difference that made. Going to doctor appointments, even able to start attending church by June. My blessings continued. I was doing well mentally, physically and enjoying life.

Bonies continuing story