Wheelchair & 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 surprisedto 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-wheeldrive 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 view mirrors 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. Onecustomer used the bathroom while we were there. We thought that soon as she left we could exit unnoticed. 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 raccoon, 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 the left sock and 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 with sheet and blankets to stay warm and resume what ever activity she had been doing on 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 submarine 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 did not scold her I just asked her to awaken me in the future. Remember this we had talked a lot about 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 something 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 like a honeymoon and our learning more about one another.

Guest Author, Max Shaw the founders husband

Brought to you by Charcot Awareness Education Foundation

Out & About in Public

By the time the second trip in the van had been completed most of the difficulties of getting Annita into and out of the second row of seating in 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 in a wheel chair to one place, or another. 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 a disabled spot. This process is not that difficult. Parking is only the beginning. We were surprised to find out how many disabled parking spots are a significant distance from the sidewalk or a ramp to get on the sidewalk, for that matter into a store or other organization. The next, was to pay attention to the ramp! Does the ramp evenly match the sidewalk, or the pavement. Either way can give your passenger an unpleasant surprise, like almost being dumped in the parking lot, or traffic coming off the sidewalk. When the ramp has not been properly placed street to sidewalk or the reverse, moving the person backwards so the larger wheels go over the misalignments first is the best method. If not, this can sure play the devil with trust issues and your passenger being relaxed when riding on this platform. Sometimes one can wonder what the disability was when a large 4 wheel drive pickup, raised up so high is parked in a disabled parking spot, one that driver and passengers have to climb up into it, and they have displayed a disabled placard in the front window of the pickup.

One day we saw two people quickly climb up into a large 4-wheel-drivepickup with a placard in the window. That day the space beside the handicapped spot was the only one open and is where I had parked. As I pushed Annita from around behind our van into view the people hurried up to and into the pickup and left without making eye contact. I can understand that someone who exhibits no problems walking, but has COPD and 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 businesses and organizations have doors with an automatic door opener, but there are some doors, such as in bathroom doors, which require an able-bodied football player to open and hold open. Being inside of the bathroom the wheel chair person might be no better off without help. Perhaps there is no handicapped stall, or a stall, or with no stall doorway large enough to get the chair all the way in and of course, there are the full view mirrors to give everyone a thrill. In Russia there are mirrors on the ceiling in a Moscow airport and I’ll leave that to your imagination.

There are even some handicapped bathrooms that when the handicapped stall is in use the door to the bathroom can not be opened and there is no other 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 into the handicapped stall just closing the door so she could use of the space. One customer 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 raccoon, 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 of his passenger. The branch aisles are just three feet wide, maybe. I think state law states specifically how much space should be in all aisles of the store. By state law in Washington state requires that all aisles be at least three feet wide. On the day of a sale this is sometimes forgotten about and the maze is created.

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 as sometimes the threshold alignment between the car and the floor do not match very well. The outside entry for some stores has a door stop across the threshold, also hard to cross. In all cases backing across the threshold is best. The main thing one should remember, the front wheels are much smaller and do not go oveer gaps and bumps as well as the larger ones.

For most of the three 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 right 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 submarine or ship when I was at sea when 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 not a serious one. She fell after the second surgery on her right foot. I did not scold her I just asked her to awaken me in the future. Remember this, we had talked a lot about 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 something 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 like a honeymoon and our learning more about one another.

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

Brought to you by Charcot Awareness Education Foundation

Care Giving

The person doing care giving requires excellent patience, a sense of humor and the willingness to do what is necessary to keep the cared for person comfortable and reasonably happy. This is even more important when the person is very independent and feels shut in when they are only allowed a limited amount of movement. Having to be in, or on the bed 24/7 except for the times in a sitting position during meals is even harder on those who are very independent. Seemly normal things require more effort than before because of the lack of movement. For instance, just brushing ones teeth requires having something to spit out the tooth paste mixture into, and at least one added container of water for the person to rinse the brush and their mouth. This is in addition to having a towel available to protect the bedding, their sleeping garments and to wipe their mouth after finishing brushing the teeth. There were other things which will follow.

Care giving for some one with limited movement presents a different set of solutions when bathing or trying to shampoo their hair. After getting the new mattress, Annita wanted a bath. She had had baths earlier, but this seemed more important. In the beginning, her bath consisted of using the wash cloths 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 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 placed 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 coveringshampooer 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/shampoo packet by massaging the cap she washed her hair. 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 taken earlier 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.

Each day, shortly after I got up and dressed, I began the ice pack on the right knee process on a continuing basis. The ice pack was placed above her right knee for 20 minutes each hour. The ice was used to control pain, she certainly had none from after the operation for Charcot even when back on her feet. None, not ever. 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 covered it with a blanket. We were required to keep the orbital fixator elevated above her heart. At first getting into or out of bed I needed to lift, or lower the leg because she did not have the strength to lift it herself.

I gathered up all the items 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 TV 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. Thank Goodness.
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 when I was aboard ship. This was much the same as when I was aboard ship although those problems were a lot different. I 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 to 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 and repeat the daily process. 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. After about three months the surgeon removed the orbital fixator. Her right foot was then placed in a cast, then later in a walking boot. I provided care giving until she was able to get around without help.

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

Brought to you by Charcot Awareness Education Foundation

A New Mattress & A Good Night’s Sleep

Because Annita was going to do her after surgery recovery in the Art Studio and that part of our house had ground level entry, we moved the guest bedroom bed to the studio. Since neither of us were sleeping very well at night, the mattress had to go. We had had this mattress on that bed for more than 30 years. The mattress was not lumpy, but its springs had lost a lot of their spring-e-ness. The next day I went to get groceries and mattress shopped. Searching for a mattress to suit our needs was different than what people usually have when buying a mattress. Besides being more comfortable to sleep on, it needed to be firm enough to allow Annita to raise her body off the bed. In getting off the bed She had to be able to raise herself with only her left foot supporting her without placing the right foot on the floor. She could not use the right non-weight bearing foot because there was an Orbital Fixator attached to it. Her surgeon told her she could not put any weight on that leg during the first six months of the recovery.

To find an appropriate mattress, I had to look in several different stores. After entering the last mattress store selling quality mattresses, I located a firm mattress. Then I did the following: sit on the bed, once seated, use my arms to raise my bottom off the bed to get into a standing position on my left foot without placing my right foot on the floor to assist me in getting up. (Try it, you will be surprised how awkward it is.) Then there are the firm mattresses, just choose the right one. Not many firm mattresses were useful in getting me into a standing position. The Temprapedic type, advertised as being very comfortable to sleep on, but would not work. My arms would have to have been twice as long to have gotten me up off that mattress and into a standing position. Of course, the sales people must have wondered what I was doing. They probably wondered why I was doing this particular exercise. In any event they gave me some strange looks until one of them came over to find our why I was getting off the mattress so awkwardly. She did after I told her why I was doing what I did.

I did find a mattress that day, however, the person for whom it would be most useful had to agree with my choice, my wife. After our third trip to MAMC (Madigan Army Medical Center) for bandage changes, we stopped on our way home to see if the mattress I chose was the one. It wasn’t. The clerks in the business finally understood as Annita got out of the wheel chair and hopped from mattress to mattress trying them out. Finally she found one that was acceptable. We got it a few days later and, was it ever appreciated by both sleepers.

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

Brought to you by Charcot Awareness Education Foundation

Policies Change, Disappointment and Hope

I was a very happy lady to be back in my very new comfortable motorized chair. It works beautifully.  It also makes my life easier.

About the middle of February, I received a call from the company that I purchased the chair through. The sales lady tells me that Medicare has denied payment of my new chair as the disease Charcot Foot that I have does not warrant this type of chair. You could have knocked me over with a feather, I could not believe what I was hearing. I, totally, did not understand what was happening as this was a replacement chair. Every 5 years  a patient is to receive a new chair according to Medicare rules. I had qualified for a power chair in 2007.

My provider has been placing people in wheelchairs for over 20 years and is very current on changes of Medicare rules and regulations. Yes, there have been a lot of changes in the last year with Medicare policies, rules etc. The provider had been on phone many times with Medicare and had received a verbal approval. She knew I needed the chair as quickly as I could get it because of skin pressure sores, so she ordered the chair.
 What had to happen at this time was to start the application process over again. I was devastated, but knew that “the Lord does not bring you to a problem that he does not see you through”. A rehab technician and the sales lady from the wheelchair provider came to my home. They were to see  just what type of assistance I needed to live in my home and live a normal as possible existence, and continue living alone and be able to care for myself. New paperwork stated they needed new measurement of my arms, hands and legs. They needed to see how well I can transfer to chairs, bed and shower.  The Rehab tech ruled out the manual chair as I have carpel tunnel and arthritis in my hands and wrists. Because of my left foot amputation and the right foot in a claw boot to protect it, walking is not going to happen.

All of this information has been sent to Medicare, but no answer will, probably, be received till last of April.   I have faith all this will pass and I will be approved. I am not the only person to be denied, many are going through this same  dilemma who are in much worse condition than I. They are in my prayers daily. We will keep everyone informed as to the process and final decision from Medicare. I am using “Big Red” until the decision is made. I feel very blessed. I have a wonderful group of people who are helping me and supporting my wish to be independent.

Bonnie’s continuing story.

Brought to you by Charcot Awareness Education Foundation