Archive for the ‘Guest Author’ Category

Andy Rooney’s Life Wisdom

Recently one of our CAEF board members sent me the following which I thought fitting for the beginning of a new yeqr so I want to share it with you.

Andy Rooney has passed away, but used to be on CBS’s 60 Minutes TV show. He is quoted as having said the following.
I’ve learned….
• the best classroom in the world is at the feet of an elderly person.

• when you’re in love, it shows.
 
• just one person saying to me, ‘You’ve made my day!’ makes my day.
 
• having a child fall asleep in your arms is one of the most peaceful feelings in the world.
 
• being kind is more important than being right.

• you should never say no to a gift from a child.

• I can always pray for someone when I don’t have the strength to help him in any other way.
 
• no matter how serious your life requires you to be, everyone needs a friend to act goofy with.
 
• some times all a person needs is a hand to hold and a heart to understand.

• simple walks with my father on summer nights, when a child, did wonders for me as an adult.
 
• life is like a roll of toilet paper. The closer it gets to the end, the faster it goes.
 
• money doesn’t buy class.
 
• it’s those small daily happenings that make life so spectacular.

• under everyone’s hard shell is someone who wants to be appreciated and loved.

• to ignore the facts does not change the facts.

• when you plan to get even with someone, you are only letting that person continue to hurt you.
 
• love, not time, heals all wounds.
 
• the easiest way for me to grow as a person is to surround myself with people smarter than I am.
 
• everyone you meet deserves to be greeted with a smile.

• no one is perfect until you fall in love with them.
 
• life is tough, but I’m tougher.

• opportunities are never lost; someone will take the ones you miss.
 
• when you harbor bitterness, happiness will dock elsewhere.

• I wish I could have told my Mom that I love her one more time before she passed away.

• one should keep his words both soft and tender, because tomorrow he may have to eat them.

• a smile is an inexpensive way to improve your looks.

• when your newly born grandchild holds your little finger in his little fist, you’re hooked for life.

• every one wants to live on top of the mountain, but all the happiness and growth occurs while you’re climbing it.
 
• the less time I have to work with, the more things I get done.

To all of you….think about what Andy Rooney said. Then GIVE of your TIME, TALENT and TREASURE to help a nonprofit of your choice. Blessings will come back to you, then you’ll know you have made a difference in someone’s life.

Please donate to help inform the public about the damage Charcot Bone Deterioration disease causes. Please send your donations to:
Charcot Awareness Education Foundation
P. O. Box 3902
Silverdale, WA 98383-3902
We are an approved IRS 501(c)(3) nonprofit foundation and an approved Washington State Charities Program

Message by the Founder Annita Shaw

Brought toby Charcot Awareness Education Foundation

My New Clam Shell Boot

For the past few months, I have been writing about my life since the amputation of my left foot/leg due to Charcot Foot. You have read of my ups and downs and all the decisions that I faced, the big one, moving from Alaska back to Nebraska. Finding a new home and learning I was capable of living alone was a blessing. Now it is time to tell how my life with Charcot is proceeding.

Early this summer (2014), my Podiatrist advised me to get a new Clam Shell Boot, (this brace is a Charcot Restraint Orthotic Walker, C.R.O.W. or CROW Boot) for my right foot which also has Charcot. The boot, I was wearing, was not fitting properly due changes in my leg and foot. I was rubbing a callous on the bottom and out side of my right foot.

I set up an appointment with the prosthesis builder. A cast was made of my right foot and leg. In two weeks time, a new boot arrived. This would be the 3rd boot I have had since 2004. I never realized how much our bone structure or body changes, but it certainly does.

An ill fitting prosthesis can cause skin to break down and cause open sores which do not heal well, or possibly not at all. Being diabetic, I could not risk that happening with the Clam Shell Boot. The new clam shell boot fits very snug and the leg and foot do not move around in it causing sores, or calluses.

The new boot needed no adjustments, a perfect fit. As time goes by, I will be checked for any changes in my foot/leg. Small adjustments can be made at that time. If there is shrinkage to leg/foot, more padding would be added.

I have had the new boot for 3 months and no problems, or rubbing is occurring. I am very happy with the new boot.

The CROW boot or orthosis (brace) the proper name, however, is referred to as a clamshell (because of its design), or custom walking boot. This brace is padded so open sores, or Charcot foot deformity issues can have some relief and allows for healing. This brace is padded lessening shock absorption. It also limits movement, or rubbing of the problematic sight. If you do not get proper help for your condition, it can escalate. You could face amputation

Bonnie’s continuing story

Brought to you by Charcot Awareness Educaation 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. It is at least three months healing time before the prosthesis is placed on the limb, 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 the 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 a 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.

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation

Care Of The CROW Boot

The CROW (Charcot Restraint Orthotic Walker), or Clamshell boot protects the person’s Charcot Foot. It keeps the foot stable and prevents the foot and ankle from moving, thus avoiding ulcers, sores and bruises that create other issues for the foot.

This device can save the Charcot Foot from amputation. It’s care is relatively simple. Because it is hard plastic, it can be wiped down with a damp towel and anti-bacterial soap, or anti-bacterial moist towelettes. The purpose is to remove body oils and residue. You must wear the knee high, white preferably, diabetic type sock as your foot and leg will sweat even when wearing the socks. Bonnie has to use Lamish foot spray at times to keep the foot dry while wearing the CROW boot. This helps from getting red rub spots. Because one wears a cotton sock to the knee, when wearing the boot this should be minimal. Always remember to keep your feet clean and dry. Bonnie says one can’t stress cleaning the feet enough. It is very important and one needs to check the bottoms of your feet with a mirror once a week or more to avoid having problems.

Bonnie wears the Clamshell boot. I have not, but I wear the walking boot when I have trouble with either of my feet. They both have Charcot. Though I have had major reconstructive surgery on my right foot and things are much much better, there are times when I have had to go to the walking boot to let an area of the foot heal from pressure created by my shoe.

The Velcro straps are probably the biggest issue on these devices and the shoes. How do you clean the Velcro? My husband has found if you use duct tape to clean the Velcro grip or little hook side, it does quite well. Bonnie adds that the straps on the CROW boot can be replaced easily by the Orthotics personnel. If they get grungy, or the Velcro wears out, just replace them. She has done this several times.

Continuing information from both Bonnie and Annita

Brought to you by Charcot Awareness Education Foundation

Adjusting To A New Prosthesis

The summer of 2005, I was recuperating nicely from the second amputation, a BK cut (Below Knee), on my left leg. I had gone back to answering phones and setting up appointments for the carpet cleaning business. I was feeling better every day. My check ups showed that the amputation wound was healing well. I would be fitted for a prosthesis by the end of August. I was on the road to recovery. Praise God for his healing.

(I interrupted this posting of Bonnie’s as I wanted to know more about the difference in the amputations and prosthetic devices, as well as adapting to the apparatus. She had an appointment with her “prosthesis guy” a few days ago and this was her response.

My visit to prosthetic guy was good. The first amputation I had, because of Charcot Foot, was called a Symes Cut to the base of the ankle. This was in January 2004. The prosthesis is built with two parts, wearing a gell sleve over the stump to protect it from rubbing. Then the outside part or hard part slips over this and clicks into place below the knee. The foot part can cost as much as $30,000 depending upon the type of activity expected to take place. The more activity, running, walking, the more expensive the device. The prosthesis I have now fits up to just below the knee because of the BK cut..

As I remember, the difference in the base & foot apparatus can feel unsteady and moves a bit. I did not feel real steady. I was wearing it the only time I fell. I told Mark that I didn’t remember having any trouble with the new prosthesis for the BK amputation . He said, “No, you wouldn’t the BK prosthesis fits better. It’s more stable and since you were already used to a prosthesis an easy transition.”

My new clam shell is on order for my right foot – will be here in a month or less.)

(For further clarification the Syme’s amputation: All of the bones of the foot are removed thus separating the foot at the ankle joint. The lower end of the tibia is cut leaving a flat end of the bone. An amputee can walk about the house on it without a prosthesis or crutches. His leg is a bit shorter however.

The below the knee amputation often referred to as the BK or BKA is thought to be more stable for the amputee. There are two major techniques. The Burgess technique brings the skin and muscle from the back of the calf forward to cover the shin bones after they have been divided. The other technique the skew flap (kinsley Robinson) is where the muscle of the calf are brought forward same as the Burgess but the skin flaps are skewed in relations to the muscle. The division of the tibia produces a good size stump to which a prosthesis can be fitted.)

This past July (2016) I was visiting with Bonnie in her home in NE. She needs a new prosthesis. Why? look at the photo of her stump.

Stump sores and abrasions

Stump sores and abrasions

Remember Trevor in Alaska? He said if it was ill fitting, it needed to be replaced. Ill fitting results in bruising and blisters. Not a good thing. This could lead to infection which could be devastating. Her new prosthesis had been on order 3 months at the time. As of tonight Oct. 2, 2016 when I spoke with her by phone she still does not have it.

A big concern!! What’s going on? Are others having this problem? Are You?

Contact me at mashaw@mindspring.com by phone 1.360.509.2049 or mail: CAEF PO Box 3902 Silverdale, WA 98383-3902

Bonnie’s continuing story

Brought to you by Charcot Awareness Education Foundation
—————————————————————————————————————————

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