Archive for June, 2010

Wheel Chair And Other Lessons Learned

By the time the second trip in the van had been completed most of the difficulties of getting Annita in and out of the vehicle had been corrected. However, this person began to wish there had been a short course on what to look-out-for when pushing someone places in a wheel chair. Since we had become disabled there were things associated with the prospect, like getting a display placard, so as to avoid a ticket for parking in disabled spot. This process is not that difficult. Parking is only the beginning. We were surprised P6130005to find out how many disabled parking spots are a significant distance from the sidewalk or a ramp to get on the sidewalk. The next, pay attention to the ramp. Does it match with the sidewalk or the pavement. Either way can give your passenger an unpleasant surprise, like almost being dumped in the parking lot or traffic. This can sure play the devil with trust issues and being relaxed when riding on this platform. Sometimes one can wonder what the disability is when a large 4 wheel drive pickup has a disabled placard in the front window and one almost needs a ladder to climb into the seating area.

One day we saw two people quickly climb up into a large 4-wheel P6130010drive pickup with a placard in the window. That day the space beside the handicapped spot was open where I had parked. As I pushed Annita from around behind our van into view they both hurried up into the pickup and left without making eye contact. I can understand that someone who exhibits no problems walking, but needs oxygen from time to time is disabled. I am a little suspicious when it takes a climb to get into the vehicle and those entering seem to not have any physical problems.

Many doors have an automatic door opener, but there are some doors, as in bathroom doors, which require an able-bodied football player to open and hold open. The inside of the bathroom might be no better. Perhaps there is no handicapped stall with no stall doorway large enough to get the chair all the way in and of course, there are the full viewmirrors to give everyone a thrill. There are even some handicapped bathrooms that when the handicapped stall is in use the door can not be opened and there is no entry or exit either for anyone. There was the time when the door to the women’s bathroom had no automatic opener and was very heavy, so I helped my wife to enter the bathroom. We got her in and the handicapped stall door closed so she could use of the space. One P6100012customer used the bathroom while we were there. We thought that soon as she left we could exit. We started to leave and suddenly the door opened. The woman just stood there with her mouth wide open. Peeking around from behind and to one side much like a racoon, a friend of ours appeared. I said, “Boy am I glad to see you.!” She said, “We are going to have to quit meeting in strange places like this.” We left and I do not think the woman closed her mouth even then.

Some department stores are real obstacle courses. The store is trying to make the most of its selling floor space with a major sale. Woe to the wheel chair pair trying to go from one place to another in the clothing areas away from the main aisles through the store. Your passenger is either dodging clothes, furniture, toys, or small appliances. This is when the chair pusher becomes concerned about the welfare his passenger. The branch aisles are just three feet wide, maybe. I think state law states specifically how much space should be there.

Homes are not the only places that have thresholds hard to take a wheel chair across. With elevators it is wisest to pull the chair in through the doorway and not push as the ride is smoother and safer. The outside entry for some stores has a door stop across the threshold, also hard to cross. In all cases backing in is best.

For most of the two months the orbital fixator was attached to Annita, it was necessary for me to help her position her right leg. It took the better part of six weeks before she could successfully move it without a lot of help. The other factor was making sure there was enough space between that foot and any other solid object, such as a door or wall. Essentially we handled the foot and leg as if there were broken bones. There was a time or two when I did inadvertently bumped the leg. Although much of the above talks about being out in public, there was the process at home. To get off the bed and into the wheel chair required the following; Help Annita put on a sock and left shoe, then sit up. Next, gently lift the right leg and ease it down to the floor. Steady her while she stood up and turned. Move the wheel chair close to her and set the brakes. Help her sit down on the chair. Next depended upon what was next; bathroom call, eat a meal, or be up off the bed when that was allowed to happen. Getting back into bed was the reverse. Place chair in proper location and set the brakes. Help Annita stand and turn so she could sit on the bed. Move chair out of the way. Help her raise and position her leg on the pillows for proper height and comfort. Take the shoe and sock off if she wanted both off. Help her recover her self to stay warm and resume what ever activity she had been doing from the bed.

By now the reader must think this recovery was a piece of cake. It was not, that bad either. Besides Annita and her foot recovering, I needed to make a number of changes as well. The biggest of the lot was to develop patience. I had to consider my wife and her location and movements. It made no difference what the situation was I had to be patient. First of all remember my wife went from being an independent adult to one who literally had to be waited upon hand and foot. If Annita needed to go to the bathroom at 2:30 am, I got up was pleasant and helped her accomplish the task, even if I was a little groggy. She was concerned about awakening me, though I told her I had had that happen more than once onboard a submaring or ship when I was in the US Navy. She still voiced the same concern many times. One night she did not awaken me and we had a problem, fortunately nor a serious one. She fell after the second surgery on her right foot. I didnot scold her I just asked her to awaken me in the future. Remember this we had talked a lot aboout the recovery prior to the operation. But talking about and living the event is a much different situation. You can do detail planning, however, there will be somethng missed. We elected not to do detailed planning, so that when a surprise happened it did not create serious worry. We had as good a time as possible and I did handle the situation much better than the naysayers early on were stating. In a way it was a little llike a honeymoon and our learning more about one another.

Guest Author, Max Shaw the founders husband

Out And About In Public

Going out in public was another adventure. I was used to the car routine and going to Madigan. We had been eating in their cafeteria. The food was good and definitely the right price. It was a great place P9050079for me to practice using the wheel chair. They have a beautiful water feature that runs under a walk way between the clinic area, the hospital and cafeteria. It is very therapeutic. I loved watching the beautiful swans and other water fowl as they gracefully navigated the water way. Everyone was always so kind and helpful. Then we tried the commissary. This was when and where I heard the question “What is that on your foot?” It was a Bone Growth Stimulator. I was to wear it three hours each day until the foot was healed. Dr. Roukis said the healing wouldn’t be complete for three years.. It was to help my body accept the artificial bone in my foot. Children were especially interested. I really enjoyed talking with them even though their parents didn’t want them to bother me. I usually ended up visiting with the parents and other adults as well. That was right up my alley as I was getting to teach people about Charcot Foot. I guess you could say I got a “high” talking about something not very many people were familiar with.

Because the street and sidewalk were not always the same height, Max sometimes gave me a jolt. I sometimes felt I was going to be dumped out of the wheel chair. It got to be funny to me. However, Max didn’t find it humorous. When I would ask someone else in a wheelchair if their care giver tried to dump them in traffic, they would laugh. We would then strike up a conversation. I learned some of them had the same problem I had. Some of them had to have their foot and lower leg amputated.

P6130015Shopping for clothes was like walking through a forest. Many of the racks were too close together and I couldn’t get through. Apparently, there is a law concerning the distance between them for wheel chairs, but not sure it is really adhered too. After a short time, I was beginning to understand the problems someone who is disabled contends with. Another was the distance from disabled parking to the sidewalk access. It isn’t at all consistent. Sidewalk ramps are not consistent either.

The bathrooms are another story. Some had no handicap access at all. We went to a nice restaurant and the waitress offered to show me to the restroom. When we got there, she was shocked at how heavy the door was, not to mention there was a small hallway with another heavy door that I could not have maneuvered in order to get into the restroom. The stall was only large enough that you could get in with the chair, but couldn’t close the door. Of course once you sat down on the stool you could see yourself in the bank of mirrors above the sink. The waitress was very surprised. Hopefully, something has been done about this situation by now. But, We haven’t been back there. When I first went out in public and needed to use a bathroom we found this establishment had only a mens or womens bathroom, not unusual I might add. Unfortunately, I needed Max’s help. Since, no one was around he went in with me. Fortunately, it was a large stall. I will let him tell you what happened in his next posting for you to read. He was incredibly helpful to me and put up with more than anyone should. We have some good laughs now.

One evening some friends of mine decided we could go to our local P2140036casino for their buffet and maybe play the slots. So, we did. The food was excellent. They spoiled me by waiting on me hand and foot, even taking my food to the table or getting me something I might want. Need I say we became “regulars” there? Many of us are on first name basis now. They have a large family restroom, easy wheelchair access and easy to use. The handicap parking is very close to the gaming area and elevators if needed. I became quite comfortable with the wheel chair.

Shopping in the grocery store was fun as I could see what was on the lower shelves and Max could do the upper ones except he kept losing me in the store. Usually, I had stopped to talk to someone. That slowed him down.

Deciding I could go out in public was one of the best things I did. I believe it helped me heal more quickly. I couldn’t feel sorry for myself. Not with all that encouragement from friends, former students, colleagues and strangers.

Care Giving and A New Mattress

Since neither of us were resting very well, the mattress had to go. While out getting groceries, I decided to tackle the task of finding a mattress. Searching for a mattress to suit our needs, required concerns, different than what people usually have when buying a P7260049mattress. I knew I would have to look in several different stores. After entering the business selling quality mattresses, I had to locate a firm mattress and do the following: sit on the bed, once properly seated, use my arms to raise my bottom off the bed to get into a standing position without placing my right foot on the floor to help me to get up. (Try it, you will be surprised how awkward it is.) Then there are the firm mattresses. Not many were useful in getting me into a standing position. The Temprapedic type, probably very good and comfortable to sleep on, but my arms would have to have been twice as long to have gotten me up off that mattress. Of course, the sales people who must think you have lost a few marbles while you are sampling the wares of their show-room continued to give you strange looks. I did find a mattress that day, however, the person for whom it would be most useful had to agree it would be, or was up to the task. After our third trip to MAMC for bandage changes, on our way home we stopped to see if the suitable mattress was the one. It wasn’t. The clerks in one business finally understood as Annita got out of the wheel chair and hopped from mattress to mattress trying them out. Finally finding one that was acceptable. We got it a few days later and was it ever appreciated by both sleepers.

We continued with the recovery process. After about four days, Annita wanted to have a bath. In the beginning, her bath consisted of using the washing clothes sent with us from the hospital. They were the type used in Iraq by the soldiers. I heated them one at a time in the microwave for about 10 seconds. Annita would then use each one to take a quick bath to make her feel refreshed. Later on, we were given permission to do water bathing. When giving a bath to a person who is basically confined to a bed, common sense, patience and careful handling of water is required. You do not need to mop the floor because you were not careful. After getting several towels on the bed under Annita and others available for drying off, I would get a stool placing it beside the bed. The a bowl of water was drawn and carried over to the bed and placing it on the stool. Between the two of us, we would wet an area of her body, soap it, rinse it several times to remove the soap, and dry the skin. This required several containers of water. There was a type of wash cloth sent with us from Madigan which made washing private areas a quicker process. Washing her hair was another event.. The first time she used a head covering P7100118 copyshampooer from Madigan which looked like a shower cap with shampoo and a little packet of water in it. After she placed it on her head, she broke the water and shampoo packet by massaging the cap. I had warmed it in the microwave preparing it for use. Once the cap was removed she dried her hair. She was tired and the bath was a success. I took care of the wet towels, water bowl and other things needed to be put up. I think she really enjoyed her nap. Washing Annita’s hair with water was much more difficult. I did not realize until we were writing up these postings that there were times Annita felt she was vulnerable

P8110055Each day shortly after I got up and dressed, I began the ice pack process on a continuing basis. After straightening the covers on the bed, I got the padded chair pillow and placed it behind Annita so she could sit up easily. Then put the necessary pillows under her right leg to elevate it properly and coveredit with a blanket. I gathered up all the stuff she wanted and put it on the bed, or the table within her reach. There were newspapers that she went through. She was looking for recipes, possible items for art projects and other things of interest. This was in addition to a pair of scissors, pen and a journal she kept. In part, she was recording this ongoing process, as well as, keeping up on correspondence. There were game show programs we watched most days. Also she had a soap opera “Days Of Our Lives”, she watched keeping up on what was happening. Friends who were a part of the aerobic group at the swimming pool would come by to visit. They always called and I am glad they did, as in this way, this prevented a communication mistake from happening. Then of course, there was the advice freely given and appreciated which in some ways helped although we did not have any serious difficulties.

Annita was very concerned about awakening me at night so that she could make a bathroom visit. . I got up as if I had been called much the same as when I was aboard ship. Helped her put a sock and shoe on her left foot as required by the doctor. Helped her get her right leg off the bed so she could sit up. The orbital fixator weighed about 10 or 15 pounds and she was not to place it on the floor, or put weight on it. I helped her stand and steady her as she slid and wiggled her left foot to be able to turn and sit in the wheel chair. Release the wheel brakes and move the chair to the potty and reset the breaks. I would help her get up and turn using just her left foot the make the transition. She then sat down. When she was finished the reverse process was used to get her back into bed. It sounds time consuming and complicated, but it really is not. I would then turn off the light and get back into bed. I wished her a good night. Laid back down and went right to sleep. The following morning it was get up. Sometimes as late as 9 am and begin again with the things needed to be done that day. The potty chair was near the bed. I emptied and placed clean water in it each day, sometimes several times It was several weeks before Annita could easily move the operated foot other than keep it off the floor.

This weeks article was contributed by Max Shaw, husband of the Founder Annita Shaw

What’s That On Your Foot?

When I am out and about in public wearing the bone growth stimulator even now, it is a conversation starter, a another chance to talk about Charcot Foot. I have worn it at least 3 hours a day on my right foot since surgery. That was three years ago. I was told to wear it for three hours a day for three years, or until it quit. I have done that, missing only a handful of days. I truly believe this device has been a big benefit in helping my foot heal. Artificial bone was placed in three different areas in my foot during surgery. It is my understanding the artificial bone is eventually replaced by your own bone.

The bone growth stimulator is a electro magnetic device that was to help my body accept the artificial bone and stimulate bone growth. This device is strapped around the area to aid in healing for the period of time determined by the surgeon.

Let’s step back a bit. In the hospital, after surgery my left leg was Leg missagerwrapped in a device that was to prevent and reduce atrophy and increase blood circulation and stimulate the muscle since I wouldn’t be moving much the next few days. This was called Electrotherapy. In 1855 the developer, Guillaume Duchenne, explained alternating current was superior to direct current as there were fewer complications. During the 1940’s, the US War Department investigated the application of electrical stimulation not just to retard, or prevent atrophy, but to restore muscle mass and strength.

On my right foot was a bone growth stimulator. There are three categories of electrical bone growth stimulators: invasive, P9220003semi-invasive, or noninvasive. Mine was noninvasive and I will give you some information about it. Mine was a Pulsed ElectroMagnet Field (PEMF). This device uses low-energy electromagnetic fields promoting healing by creating electical currents to stimulate bone formation and calcification. The currents stimulate bone cells changing the cell wall structure enhancing bone union. I was able to wear it on the Orbital Fixator, casts, the boot and my shoes. It was pretty easy to use as it had a strap that was placed around my foot. I wore it three hours a day which was an automatic setting. It beeped when it was done. Once done we merely took it off and plugged it in for recharging. The FDA approved ultrasound bone growth stimulators in 1996. I am pleased my surgeon chose to add this to my recovery plan. I believe it made a difference in my healing.

Next I will tell you about the Orbital Fixator.

The Reality of Recovery

Passing time between appointments, healing, keeping busy, staying comfortable and learning to go out in public now my new goals. One really needs to set these goals before you have surgery. Plan with someone, a spouse, caregiver, professional, or a good friend that may be around a lot. Have a pretty good idea about the length of time you will need to get well, the type of care you will need, how mobile you will be. In my instance, I knew I would not be able to walk, climb stairs, move around, take a shower or bath, especially the first three to six months. Because of these limitations, it was suggested we consider a care facility. But after Max and I talked it over, we decided we had a space that would work for us, the studio in our home. Max could care for me there.

I really wanted to be as independent as possible. I soon learned I needed a lot of help. The hardest was waking up at night, having to go to the bathroom and having to wake my husband every time. Max had to put a shoe on my left foot and steady me, so I wouldn’t fall as I hopped on the foot. I couldn’t lift my right foot up, because of the Orbital Fixator, to even get back in bed. He had to. If I wanted to read a magazine, sort papers, watch TV, draw or write, we had to organize things in such a way that I could reach them on a small table by the bed, or have them placed on the bed. Other wise I would drive him crazy. He spent a great deal of his time in the computer room next door. This meant if I needed him, I could call on the phone, but he checked on me regularly, so I didn’t need to call very often.

There were times I just enjoyed looking outside. Since it was summer, PB080025we could leave the sliding glass doors open with the screen in place. I really enjoyed the deer bringing her twin fawns by, all the chipmunks, birds and especially the Pea Hen as she seemed to check on me. We would carry on quite a conversation at times. Our cats kept me company. They didn’t understand what was going on.

P7260049I was beginning to become uncomfortable. The mattress on the bed was really old. My legs were hurting, not to mention my behind. Max would have to see what he could do about the mattress. I was sleeping off and on all day. Some times at night I couldn’t sleep. One of my good friends would record movies and programs for me. I often watched them at night.

Bath time was a new experience. I began to appreciate those soldiers that were in the field with no facilities. I used disposable wash cloths that were heated in the microwave. I even had a shower cap that I could use to wash my hair. This took some getting used to until I could finally use a basin with real soap and water. Just try to keep the bed dry.

Our friends, neighbors and our son were great. They came to visit P9040029often and many times brought food and flowers. Get well cards came from every where. Soon, I was on the phone visiting with friends and relatives across the states. I also wanted to know more about . I remembered our local paper, the Central Kitsap Reporter, put out a health issue at the beginning of the year. I called the editor, after a brief discussion about Charcot, they decided to do an article on me as they were unfamiliar with Charcot. They sent out a reporter, Erin, who took pictures and interviewed me. I was pleased at their interest and the article they published 10/8/2007.