Archive for September, 2016

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