Useless To Useful Feeling

Life was setting into a routine. I was getting stronger every day, but being a person who was used to being on the go working, taking care of our home, and traveling. I was feeling pretty useless. Everyone was trying to get me interested in hobbies, knitting, crocheting etc. I was never good at any of those things and just couldn’t concentrate on any one project for long.

Reading books (which I used to love to do) I found I couldn’t remember what I was reading. Yes, depression was working on me and doctors told me I had, had so many medications, especially antibiotics, that it would take awhile to get them out of my system.

My choice of entertainment was games on the computer and watching movies. I was also
repeating the “serenity prayer” many, many times a day. Slowly, things began to get better. Bonnie J. would take me grocery shopping. I would get in one of the mobile carts to get around the stores. This worked pretty well (first trip was hilarious ran into a few things) but it felt so good to get out and do something constructive.

I had lots of visitors which was always wonderful, but I needed to get my mind busy. In the fall a friend of my son, Chad, was starting a carpet cleaning business. He was telling me he did not have time to set up appointments cause he was busy cleaning carpet. Next thing I knew I was answering his calls and setting up appointments for him. My prayers were being answered now. I felt I had a purpose to full fill and that I could help someone.

My stump was healed and the prosthesis was working well. The new boot on my right foot to protect it from breaking was getting easier to walk with, I always had to use a walker and still do as I am very unsteady.

During the winters first snow, I found out real quick that manual wheel chairs do not work well in any amount of snow. This did not stop me from going to church, shopping or going out to dinner with friends. We just cleared a path first.

I kept asking Tony if we could get a little puppy to keep me company. He would always say “No – a condo is no place for a dog of any size. They need to run and play.” Well, my sister Donna knew I liked pugs, and she sent me a card that had a picture of a pug on it. I kept it on my computer desk and I talked to everybody about “my pug”. In late February, my son Shannon, called and said he found me a pug puppy 8 weeks old. I was ecstatic, Tony said, “Boni this is not possible. You can’t take care of him.” I said, “I could.” So “entered Tuk” into my life. He was so tiny. He slept on my chest all the time. Training presented a few challenges, but we mastered them. And that little dog is my best buddy to this day.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation

Phantom Pain After Charcot Amputation

In one of Bonnie’s recent postings, she mentioned phantom pain. I wasn’t sure what it was, so I called her and she explained it. I then asked my husband to research the topic and found it quite interesting.

We have all experienced pain at some time, but imagine you have just had a leg amputated and you are experiencing severe pain in your big toe. You no longer have that toe, but the pain is there. It is very real. What would your response be?

For much of the history of modern medicine it was thought that amputees rarely had pain problems. Those who did report pain were thought to be only one in about 200 amputees and this was reported to be in their stump. This isn’t true. The medical community didn’t know this until a few years ago when a survey was sent out to military amputees in the US. Over 7000 responses to the survey revealed the majority of them reported being bothered by stump pain and over eighty percent reported phantom pain. A few reported the pain went away after the amputation healed, most continued to suffer from pain for the rest of their lives. Some reported being pain free after the healing, but that phantom and stump pain returned many years later

If you are an amputee the majority of you can expect to experience at least intermittent pain for most of your lives. Some of the typical pain may be burning, stinging, cramping, shooting, twisting, or other unpleasant sensations. These episodes can vary from a few seconds a year to several weeks at a time, with several to many episodes per year. Some have continuous pain, which varies in amount from almost none to excruciating over the course of a year. For most, the pain interferes with work, sleep, hobbies and social activities. Activity and the weather were also associated with the event of pain.

There are also phantom sensations. They are normally not painful. They are more like feelings. Just after an amputation, nearly everyone feels the entire amputated part of the limb. Most people feel that they can move and control it the way they could when it was attached. You can just get up and walk normally. In fact, I had that sensation after breaking my femur in my right leg after surgery and was ready to go home. There was much healing to take place before I could do that.

These sensations are so real and normal that many young, traumatic, lower limb amputees frequently try to get up and walk away, a day or so after their amputation. One still feels the amputated portion of the limb including a sense of position, temperature, itching, and often the feeling of something normally worn on the limb.

What causes the pain? The brain and spinal cord contain circuits which cause anxiety to magnify feelings. These circuits are not under our conscious control and can cause one to experience warmth as severe burning, tingling to be felt as shocks, etc. Because you know the amputation has taken place, you may begin to doubt your sanity. Thus most people would not tell anyone about these feelings in the hospital or anywhere else. Because the medical community didn’t realize this was happening as often as it was, may be part of the reason people weren’t warned of the sensations or pain which lead to severe anxiety.

There is some treatment for the Phantom Pain. Find a knowledgeable physician to help you. Do not become a victim by permitting an unknowledgeable physician to operate on you.

As an added note, there are a number of incidents of alcoholism among amputees, as a direct cause of an attempt, at covert self treatment of phantom pain.

This posting is based on an abstract from the book “Phantom Pain” by Lieutenant Colonel Richard A. Sherman PhD and associates published by Plenum Press in 1997.

Message by the Founder Annita

Brought to you by Charcot Awareness Education Foundation

Care Of Stump & Prosthesis

After amputation, it is very important to take proper care of the stump, cleaning it daily and following doctors orders in activities and movement. Most healing time before the prosthesis is placed on the limb takes 3 months, but each individual is different. I was in the hospital for 3 months after surgery, January 19, and was not fitted for prosthesis until mid April. My stay at the hospital for so long was related to other problems (see previous printings). Before being fitted for prosthesis, the wound was healed and swelling had gone down. It is not unusual for the limb to shrink further and changes need to be made to the prosthetic.

DAILY CARE:
Clean limb each day at bedtime ( I use baby wipes)

Inspect limb for any red spots, or sores (report them to Physician quickly)

After cleaning, apply lotion over entire area covered by prosthesis. (I use mineral oil)

Clean prosthesis gel sleeve that covers limb (I use alcohol swabs)

I totally wash prosthetic gel sleeve every other day, there are different directions from manufactures or prosthetic team. Use what they recommend.

CARE of PROSTHESIS:
The actual prosthesis needs little, or no care, however the gel sleeve you wear on the limb needs cleaned daily (see above). You will probably receive two gel sleeves with new prosthesis. This makes it easy for cleaning/wearing times.

I AM WRITING ABOUT MY OWN EXPERIENCES AND HAVE THE OLD TYPE PROSTHESIS. CARE FOR THE NEWER TYPE ATHLETIC ONES WOULD BE DIFFERENT.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought to you by Charcot Awareness Education Foundation

CHARCOT INDIVIDUAL IN A WHEELCHAIR

After learning that my right foot was already infected with Charcot, my biggest goal was to do everything I could to keep it. This meant always wearing the crow boot to protect it and to keep it formed correctly. I found, quickly, that the more I used my walker for walking it would cause my right foot to ache, so I learned to maneuver my manual wheel chair very good. In one of my previous articles I mentioned the summer of 2004 “I HAD TO LEARN HOW TO BE AN INDIVIDUAL IN A WHEEL CHAIR”, I have been asked to explain that statement. Actually it is a whole lot of things all combined.
First: I needed to learn how to accept help graciously and just say “THANK YOU”. When you go from being a person who is in control of each and every movement you make, it takes a while to change your minds actions. Thinking I can still take care of myself in every way (not true). Do not argue with yourself and accept the person’s help. Accept graciously and know in your heart you will be able to help someone else in return at some time.

Second: Learn to be patient with yourself and others in all things that you do. My main mode of travel in Anchorage for two years was with Tony, Sharon or Bonnie J. Which was no problem, they were catering to me totally. When I moved to Nebraska I discovered the “HANDY BUS” (county/state operated) for a very minimal fee you can go places within the county. I use it for doctor appointments, grocery shopping and daytime entertainment (Senior Center for lunch and playing cards). Since so many people use this mode of transportation, you do have waiting periods, which can get lengthy. Quick remedy, take a book to read, or puzzles to work, or my favorite, people watch and strike up a conversation. This makes me feel independent and making my own plans, also understanding the movements / chores you will attempt take time – don’t get frustrated because it takes you longer.

Third: Planning your day/movements safely so that you have no mishaps, such as falling. No more spur of the moments to jump up to go get something in the other part of home etc.

Fourth: Self Confidence. When I first arrived in Nebraska, I was feeling very vulnerable. I felt I needed someone with, or around me before I could do anything. I didn’t trust my own abilities. I was staying in a local motel in a handicap room until I could find a permanent home, probably an apartment or assisted living place. My sister Cindy became my instant helper (God Bless her). She would come over to take my dog, Tuk, out. She would stay with me in my room while I showered in case I would fall. Remember my home in Anchorage was 3 stories. Lots of stairs. Well, with in a month, or less I could take Tuk out myself, go for walks with the wheel chair, with Tuk along side. Soon discovered, I was very safe and could maneuver well enough that I could do my showers without having Cindy there.

Fifth: Faith in God – None of the previous things can happen without Faith & Trust in God and thanking him many times during the day for the ability to do everything you must.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought to you by Charcot Awareness Education Foundation

STARTING LIFE AS AN 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 too 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. Did not wear it at night time. During the check up I told Dr. Chang of the discomfort in right my foot.

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 “crow 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 CROW 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)
crow 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 crow boot has performed beautifully.

I was diagnosed with Charcot in my right foot 13 years ago and crow boot has kept my foot formed correctly and doing well at this time. Another blessing. I cannot walk with walker much any more as my right foot will get pretty severe pain in it. So, I am confined to a wheel chair. This development took awhile to get used to, but I did a lot of praying for acceptance and to get on with life.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought to yoy by 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.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

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 13 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 hand-capped 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.

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 recommended 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.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation

Sharon’s Surprise & My Continued Rehab

Sometime the middle of April – Sharon contacted fellow employees at Penair and many friends
at Anchorage International Airport. She said she needed help in finding a way to help Stair GliderTony and I purchase a Stair Glider (also called Stair Lift) for our three story condo. I knew nothing of this in the beginning. I had been overwhelmed by all the calls, cards, gifts and prayers from all of them. I did not feel they needed to do more, but boy did they. Several long time friends at Alaska Airlines, ERA Aviation and Penair, put together fund raisers, silent auctions, and lunch specials at the airport. So many people worked so hard. The end result was over $1400, enough to purchase a Stair Glider for the 1st set of 20 stairs. What a blessing for us. I was totally amazed and so proud of all of them and the blessing they gave us.

As terrible as January, February and March were, April was buzzing by, lots of hard work, but so rewarding. Tony and I were even able to attend Palm Sunday and Easter services in the hospital chapel. It was wonderful. Day to day routine was getting easier – practice makes perfect.

The rehab trainers met with Sharon at our home to see how I would be able to cope with a three story condo. The stair gliders were a must and as Sharon did her investigation, found them very pricey. The trainers decided I would be making my part of our home the living room/kitchen area which did have a half bath on that floor. I needed a hospital bed for sleeping, bathroom stool would need a guard for holding onto for sitting down and being able to rise.

So, I continued workouts, building body muscles back and learning how to roll a wheelchair by my self. (You would think that should be easy.) There is a certain knack to it and definitely good muscles are needed, which I did not have at first.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation

Fitting The Prosthesis

Second week of April 2004, my orthopedic doctor, Dr. Chung, advised me I that my left foot stump was healed and ready for prosthesis fitting. He was sending Trevor Munger to do the fitting.

That afternoon, I met another miracle person. He would be a big influence on my healing, mentally and physically and, as far as I am concerned, a friend for a lifetime. This young man (early thirties at the time) with the biggest smile, a bucket and paraphernalia in one hand (left) as his right hand/arm was amputated below the right shoulder. I probably thought, “How is he going to accomplish fitting me for a foot prosthesis.”

Trevor said, “Hello! Are you ready to start the next phase of recovery. ” Still smiling. I said, “Yes, I think so.” I was still hesitant in believing he could do this. He said, “Before we get started let me tell you my story.”

Trevor was born with the right arm not being developed. He became a very active young man. His family encouraged him in all aspects of his life. His disability did not stop him from doing anything and everything he wanted to accomplish. In high school in Kenai, Alaska he became a trophy winning football player and continued on to college to learn the art of making prosthesis. He is now the leading prosthesis maker in Alaska (That’s my opinion, but from what I have read and am told, it’s true.)

I was in awe of this young man. I figured YES. I can do this with God’s grace and help. Trevor explained that first he had to make a cast of my left leg/stump, then design a prosthesis. It would take several fittings before the final product was ready for me to use. That it would take adjustments at different times, as I became used to walking with a prosthesis.

I was in my wheelchair and Trevor sat on floor. Very handily he began the process of building the cast using both arms expertly. At the same time building my confidence of him and his ability to do his job.

I think it took about a week and one day before in he walked with the prosthesis and said let’s put this to good work. I wheeled myself into the exercise room that had the bars to hold onto as I had learned to stand and eventually walk there. What a strange wonderful and scary sensation, putting on the prosthesis and standing on both feet for maybe 10 seconds before setting down.

Trevor told me, “You gotta go easy. Make sure there are no breakdowns in skin, that no sores or blisters start because of rubbing from ill fitting prosthesis.” I was on cloud nine and very happy, but lots of work yet to build up the stump and rest of my body. By the end of second week in therapy I was getting very proficient at dressing myself, using the slide board to transfer from bed ,wheelchair and exercise mat. So onto bigger and better things, learning how to shower, do kitchen jobs and getting into the car (They had an actual small car in the rehab area.) using the slide board. I was feeling pretty smart by then and knowing the lord was with me every step of the way. I was continually praying for guidance and giving him all the praise and glory for my accomplishments.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation

Recovery Really Begins

My second bout with pneumonia finally ending, and the miraculous recovery of kidney function, I knew I was well on way back to life. Praise Our Father and son, Lord Jesus. I was given the choice of staying at Providence Hospital, or Providence Health (assisted living) for rehab. The hospital supervisor (for rehab) was very straight forward (stern) about the fact they only had a few beds for rehab. People using this facility had to be ready for 8 hours of therapy. This scared me, somewhat, but I was determined to do what ever it took to get well and go home.

They said they would give me a week to see how I was doing. So I was moved to the fourth floor rehab area the next day. The work started. First thing I had to accomplish was just getting up and to set on edge of bed without getting dizzy, or falling over. I did this repeatedly for 2 days. I was managing to set up unassisted for 15 minutes.

Next was getting up early AM to brush my teeth and do a sponge bath on my own. I had to learn how to dress sitting on the edge of bed, eat breakfast. Rest for an hour, then start using a slide board to slide from bed to wheelchair and then back to bed (I had not been fitted for the prosthesis). This was usually a 30 minute work out, then rest and have lunch. Then back to slide board practice. By the end of the week I was able to do morning toiletries – dress and use the slide board to wheelchair with minimal assistance. So, after the supervisor of rehab tested me, she was pleased at how remarkably I was doing . YES, BY THE GRACE OF GOD AND MANY PRAYERS, I DID IT.

The next week was the same routine and they added being taken to the workout equipment. They had me using the hand bicycle machine to exercise arms /shoulders and chest area. I was now using the slide board to the workout mat laying down and working several exercises to build up leg muscles. I did all this repeatedly for a week. It was amazing how quickly all body parts were responding and getting stronger.

My serenity prayers were continual, giving thanks to the Lord and to keep getting better. By the end of this 2 weeks I was operating on my own the manual wheelchair, moving from bed to wheelchair and back with the slide board. I was also moving to the workout mat with the slide board with ease.

This post was written by Bonnie Ribitzki a Charcot amputee and friend from Gering Nebraska

Brought toby Charcot Awareness Education Foundation