Nov 25 2016 - Update on RV living.

10:00 Nov 24 2016

Thanksgiving Day

There are a zillion mosquitos flying around this morning. All over the RV windows and the cars.

Notice the word “cars”.

Next to the RV are my buddy's car he loaned me, and my other friends delivered my Metro from town yesterday. :-) I love my Chevy Metro. It is a great little car that gets great fuel consumption. But it is a manual transmission, and needs a left leg to push the clutch. :-(

It has been acting like a scarecrow in a friends driveway. To add to the impression that someone is home while she is at work.

There is something about me, that I am sure is not normal. When confronted with a possible action, I often think “Why would I want to do that?”

I analyze the “intention” of my actions.

It is not as if I need a “reason” to do something, but I do want to understand “why” I want to do something. Often when I do something to help someone, I do it because it makes “me” feel good to help them. I am not being nice because I want to be nice, I am being nice because it makes “me” feel good.

It is like my only purpose in being nice, is because I am selfish. Being nice, makes ME ME ME, feel good.

Yesterday, two of my friends brought my Metro out to the property. They both were very busy getting ready for a large Thanksgiving dinner and gathering, yet they took time to do something that was not pleasant, and time consuming. They did this for me.

I immediately question their motives. Why would they do that for me? What is in it for them? Do they also get pleasure from helping people? Are they just good people, and want to help others. Altruistic by nature. Motiveless giving. The world needs more people like these.

Having friends like this is a great thing, but I question my “worthiness”.

When it comes to being friends, I don't think I am very good at it.

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I have many projects for the long weekend.

I want to install a wireless alarm. It will sound an alarm in the RV when ever anything goes through the property gate. The gate is about 100 yards/meters away from the RV.

I need to install 3 grab bars in the bathroom.

I have hooked up one of the living room lights to the voice controlled Arduino. I can turn on and off the living room light by voice now. I need to also hook up the hall and bathroom lights.

Wow! A hawk/eagle/big bird just attacked the bushes, it got a squirrel.

It's a hawk. Bare legs. Smaller than I thought. Bad luck for the squirrel, but good luck for the hawk. Life is not a “zero sum” game.

The biggest project for the weekend, is trying to figure something to do with the Metro. I spent a few hours online, trying to figure out some options. I want to be able to drive it, and tow it behind the RV.

Option 1. Make the Metro electric. This would cost about $5,000. Twice, what the whole car is worth. Electric cars don't need a left leg.

Option 2. Buy/install an electric clutch conversion kit. About $2000.

Option 3. Invent, and make a cable pulley system to allow hand operation of the clutch. About $200 for parts, plus lots of labor.

Option 4. Design and build a holder for the prosthetic foot onto the clutch pedal. Then use force on my stump to push the prosthetic foot, to move the clutch. $10.

Yesterday I tried to drive the Metro using my prosthetic leg to push the clutch. With the seat almost all the way back to minimize the angle and increase the leverage to push the clutch pedal. With correct placement of the prosthetic foot, I was able to push the clutch in, BUT...The knee locked. I was pushing the pedal with the prosthetic heal, so as soon as the leg went straight, it locked. I was jammed tight in the seat, and no way to release the knee lock.

I slid the seat all the way back, and used my cane to pry the prosthetic foot down far enough on the clutch pedal. Enough to put pressure on the toe, which broke the knee loose.

This solution will need lots of thinking, and planing to be able to use the clutch with the prosthetic leg in a fail safe way.

I also need to move the RV about 2 feet back. But first I need to fill in some holes. I dread shoveling sand into the holes. My balance seems to be the problem. I would make a lousy gardener.

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I just learned that many Chinese stores, that specialize in women's things, have “man caves” for men to wait while their women shop.

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Sep 30 2016 - Another new socket...No.10

I have been wearing my latest socket quite a bit. It is very uncomfortable, but...
IT DOES NOT CAUSE PAIN!!!!

It is hard to explain the importance of that to me.

The end of my stump that is farthest from the body center, is called the "distal" end. Actually, distal is the farthest of anything from the center of the body. Proximal is the end closest to the center of the body.
This is Doctor talk, but does help is being precise about body directions.

The problems of my stump are mostly at the distal end. Pressure on the distal end is very painful. If the skin on the stump is pulled toward the hip (Proximaly), it puts pressure on the distal end. So when donning (that is medical talk for "putting on")  a socket, the friction force on the skin, toward the proximal end of the stump, causes skin to pull and puts pressure on the distal end. Of course this is also a factor when my entire body weight is on the stump inside the socket.

This latest socket is kind of weird. My stump is about 35 cm long (14 in). This socket is build so that the most distal half of my stump is not in contact with the socket. The distal end just floats around like a clanger in a bell. This means that 100% of by body weight is supported on just 15 cm (6 in) of the proximal end of the stump. By putting all the weight up high on my thigh fat, it makes the pain on the distal end zero. Having all the weight concentrated is a small area is not comfortable. Like wearing shoes that are way to small.

The big problem with having the distal end floating, is proprioception.
Wiki says:
proprioception pro·pri·o·cep·tion (prō'prē-ō-sěp'shən) 
n. 
The unconscious perception of movement and spatial orientation arising from stimuli within the body itself.

Proprioception is deteriorated with drugs and alcohol. That is why traffic cops have you close your eyes and try to touch your nose with your fingers. 
By having the stump distal end floating, I loose track of, and have no feedback of, where the prosthetic leg is. I must walk slow, and watch where the leg is to know if it is in front and ready to have weight put on it.

I spent 4 hours at the prosthetic place today. We were determined to improve proprioception, comfort, and control. 
This socket needs me to wear a silicone liner against the stump skin. The socket is made of fiberglass and carbon fiber. Inside the socket is a thick plastic liner. It has the feeling of a small tire. It is flexible, but tough.

Here is me bending the inside liner of the socket with my thumb.

The inside liner is riveted to the fiberglass shell. The vacuum is formed between the flexible socket liner, and the silicone liner on my stump. That is what keeps the prosthetic leg from falling off when I take a step. So there is the stump, silicone liner, flexible liner, then fiberglass shell.

What we have been doing the last few days was putting pieces of thin foam between the flexible liner and the fiberglass shell. These foam pieces are used to push against the stump closer to the distal end, to increase proprioception. This works, BUT, the pieces of foam also increase the force needed to push the stump into the socket. The more foam, the more proprioception, but more pain. :-(

Today we cut big holes in the fiberglass shell, and put thick foam on the pieces cut out.
At first we had a ratchet assembly that pulled a stainless steel cable. This broke before we could get enough force.
Then we used my big hose clamps to pull the cut out pieces in tight once the stump is inside the socket. So the stump fits in the socket easy, THEN we add the force near the distal end to aid in proprioception and control. These movable pads put force on the femur, without putting force on the distal end.

When tight, there is a LOT of force on the stump sides. This steadies the femur and really gives me good control and it makes the whole prosthetic feel so much more like a part of my body.

The next thing we need to work on is the force required. When I release the clamps, I feel the blood rush into the stump.

But there is NO pain. I can go shopping and get in and out of the car easily.I wore the leg about 6 hours today.
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I passed the learners test part of getting a South African drivers licence. Next is to get the car registered into my name from Maddie's name. She mailed me all the required documents express, registered mail, about 10 days ago. The post office advised me today that I can go collect the documents at the post office. 10 days for express mail to go 1300 km (600 miles).

To get the car in my name needs a roadworthy inspection. The tires won't pass because they are non standard. New tires are R3000. The one brake is leaking, and that is R1000. This money is coming out of the money set aside for plane tickets to go to America. Between this and the driving lessons, I have used half the ticket money. I am now way short of money. But being short of money, is nominal now days.

I decided I'll take the drivers licence road test, in my car. It is much easier to get in and out of than the driving schools cars. I have also removed the rest place for the left foot, to give my prosthetic leg more room. But first I need the car in my name.
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Today at the pharmacy I chatted about an hour with a guy that works there. He is a right leg, above the knee amputee. It is so nice to hear someone complain exactly about the things, that I complain about. :-)

He has been using one of the very first bionic knees for about 10 years. An OttoBock C-Leg. He got a loaner unit for 2 weeks of an Ossur Rheo-3 knee with a bionic foot.
He said after a few days he was walking up and down stairs, and up and down steep slopes without a thought. He said for 20 years he has had to concentrate on walking, but with the Rheo bionic foot/knee combination he occasionally, actually forgot about the prosthetic leg.
He has had many falls in his 20 years of amputation. He has been hospitalized 3 times from falls. Usually when accidentally stepping backwards, and putting weight on the toe that breaks the leg loose, and it suddenly collapses. His wife has been with him all three times.
While wearing the loaner Rheo knee/foot combination they went to a party, and were standing talking to a guy, that was opening a beer. The beer squirted foam all over. He and his wife both jumped back. Then she screamed and reached for him, knowing he would fall. But the computer cut in and locked the knee, and he didn't even stumble. She looked at him and said "We are buying that leg."
That leg costs R850,000 ( $70,000). They are selling one of their rental houses to buy the leg. He is very excited.
He had to give the Rheo back after 2 weeks. He says his old bionic leg feels like an dangerous antique.
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Sept 15 2016 - New socket, Driving, Paralympics.

I spent yesterday at the prosthesis place. They built a new socket. It is a very complicated socket. Slit right down the front, and held closed tight with velcro. The velcro wasn't strong enough, so I added a big hose clamp also.

 The new socket is not as light as you would think with all the holes in it. The remaining part is thick and strong. It is made to be worn with a thick plastic fexible inner liner. Eventually the liner should be permanently attached to the socket.
One major problem we have now is that my skin sticks to the liner. Which is good to keep it on tight, but bad for putting it on. My stump pain is bad when pushing the stump down into anything. So if the liner and the socket are attached, then I would have to push very hard to slide the skin against the liner. That is what we are trying to avoid. Lubrication is a bad idea because then the stump would also slide out of the liner easily.
My previous liner was a flexible silicone sleeve that sort of lived on the stump, and was used to form a vacuum between the liner and the socket. As you can see, it would be hard to form a vacuum with all the holes in the new socket, so the vacuum is between my skin and the plastic liner, then the liner somehow attaches tightly to the socket.

This afternoon, I went for a short shopping walk in the local shop. I needed food. The whole apparatus was very uncomfortable. There was no pain, but the intense desire to remove the leg right there in the store was hard to resist. With no way to securely attach the liner to the socket, the liner was sometimes loose. In the store, reaching for garbage bags, the socket and leg fell off. The liner was still on tight, so I was able to put the socket back on. But it never got on tight enough again to walk on. It was like I had a crutch on my hip. I sort of shuffled the rest of the way through the store to the car. I didn't get some of the stuff I needed.

Tonight I am cutting pieces of foam to fit inside the socket to make it more comfortable

Bradley gave me many types, and thicknesses of foam.
The next big thing is to get the socket and liner to stay together. Some sort of clamp or snap, or something.
I don't see anyway to "not", put the liner on before inserting it into the socket.
My stump didn't pain me today, but right now it is not feeling very pleasant. It is funny to me to be so uncomfortable, without real pain. I fear it takes strain in ways, I hadn't thought about.
 But with all the problems, I was able to do my shopping on my own. A big step for me.

After a few days of playing with the foam to make the socket more comfortable, I think they will build a new socket similar to this one, but with extra thick carbon fiber where I now have the pads.
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The driving school collected me this morning at 04:45.
We went to the Traffic department test center. I was 12th in line. Before they opened at 08:00 there must have been 5 hundred people in the line.
I did my eye test, and then paid lots of money, and got a date to take the learners exam. 28 Sept at 10:00.
 I have 13 days to study. If I pass the learners exam, then the next day I will go and book a date for the driving test.
I talked to some of the guys there. One was going to take his driving test today...for the third time. He booked 3 weeks before. After his flunks, he had to re-book. Once was a wait of 5 weeks between tests. He first booked his learners test in mid June. 3 Months and 6 full days of testing. What a waste of human time.

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I have been watching the Paralympics. One of the largest Prosthetic makers "Otto Bock" does charitable emergency repairs of prosthetics at the Paralympics. So far this year:

Repairs by equipment
Wheelchairs: 2245
Prosthetics: 348
Orthotics: 134
Repairs by Sport
Athletics: 385
Wheelchair Basketball: 258
Wheelchair Tennis: 163
Powerlifting: 140
Swimming: 122
Total Games repairs so far: 2727

They talked about how the Paralympics is becoming all about technology, science, and electronics.

If a prosthesis becomes an essential part of who you are, then it would be part of what makes you, you. Biology alone will no longer define a human being.

Nerves transmit muscle signals at 119 meters per second.
Nerves transmit pain signals at a very slow .6 meters per second.
Nerves transmit touch signals at 76 meters per second.
What if you had a brain interface that detected a thought for a muscle movement, changed that signal into an electric signal, and sent that signal to a muscle via wires at almost the speed of light. You could have reflexes that are thousands of times faster than a normal human. Tennis anyone?

What if you had a system (like a SCUBA system re-breather) that could inject oxygenated blood cells directly into your blood stream. You could hold your breath for hours.

What if your artificial heart had a boost function to speed up the flow of blood throughout the body.

What if you had a helmet that could measure brain functions, and could generate these function. An athlete could then use this to stop pain signals. Professional football players would love that.

A fancy prosthetic electronic knee could evolve into a leg system...into a lower body system, into a complete body system. So a completely paralyzed person could be an athlete...or a super athlete.

 Now blind people "drive" to the shops in driver-less cars. Putting the same electronics on the head, could allow a blind person to walk to the store unaided.

Soon a blind, paralyzed person will be able to kick ass in ping pong.
Pure biological people will be severely disadvantaged in the near future.

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July 26 2016 - Back in Pretoria

16:00
It has been a cold and rainy day. High was 12C (53F).  It is currently hailing.
I am SOOO much a hot and dry kind of guy!

After my latest fall and the resulting hurt back, I have been using way to many drugs. While sitting in the wheel chair in George, feeling sorry for myself, and wanting to take pills for my back,...and pills for my stump,...and pills for my PLP, it is very easy to just take lots of pills, and let the body sort out what it needs.

I have been thinking a lot about how some guys on the internet are playing with open source hardware prosthesis. They are not trying to make a leg or arm replacement, they are trying to do better than that.
 One guy has BBK (Bilateral Below Knee) amputations. That is both legs amputated below the knee. He is a semi-pro rock climber. His prosthesis have multiple shapes on the prosthetic foot for jamming in crevices, and standing on tiny ledges. He also made both legs much longer so he can reach far away stepping points. He now has climbed some routes that are humanly impossible.
On the TV show Bionic Builders they have a lower leg prosthesis that has a strong spring in the pylon to allow the user to dunk a basketball.
Maybe trying to mimic a knee is a small step. Why not do much more?
They have prosthetic hands with led lights in the fingertips, and sharp knives that come out of the fingers.
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I had planned on driving back to Pretoria from George, but a friend had a son that wanted a ride from George to Pretoria on Monday, so I came back a day early, but then he could drive the whole way. I could take pills that may not be best while driving.

My "chauffeur" was an interesting guy. He gave me a good feeling about the world future. I have met so many young people that are useless, and a waste of air. (I consider anyone under 50 to be young.) Talking to a good person, that is also young, was a pleasure.

About a third of the way into the drive back, we ran into snow. Snow in the Karoo desert.

Fortunately I talked my chauffeur out of throwing a snowball at me. I held the Padkos (Road Food) that Maddie had made us for the trip, as hostage. Included in the Padkos was some excellent meatballs that he wouldn't want to give up.

The trip took about 4 hours less than when I drove it last. But then, I stopped to nap lots. My driver just drove straight through with only stops for fuel.

I miss Maddie. I'm sure she is busy getting ready for her trip to Ireland. I am not sure when we will be together again. Maybe in September. As usual, everything depends on the prosthesis guy, and the Oncologist. Not only do I feel I have little say in my future, but sometimes I feel that I am not even consulted.

One thing I do think about is whether I want to try to get the prosthesis working again. I am relatively pain free right now, and the risk of hurting the stump and increasing the PLP just doesn't seem like it is worth the price. Absence of pain is a wonderful thing. But walking with a prosthetic leg is also a good thing.

What do I do?

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Mar 7 - in George with Maddie.

I have been very lazy. No blog for a long time.

On 2 March I drove down to George from Pretoria. I planed on leaving at 4 in the morning to beat the Johannesberg traffic. But PLP kept me awake, so at 12:00 midnight I decided to get up and leave. I left the house at 01:00 exactly. I couldn't decide whether to take the toll road and save an hour, or take the smaller road and save R200. I took the toll road. It was safer in the early hours of the morning. The toll road also has large truck stops along the way that are safer for sleeping in the car.
After driving for about 6 hours at near the half way point, I stopped and had breakfast, and a one hour nap. I arrived in George at 16:15...1285 km (899 miles) later.. It was great to see Maddie again.
You would think that after not any sleep the night before, and driving for 15 hours, that I would be sleepy that night, but PLP once again ruled my life, and I only got to sleep after 02:00. I was up at 08:00. Then around 10:00 I fell asleep for real. This sleep pattern would not fit in with Maddie going to bed at 22:00 and getting up at 06:00.

I now try to go to bed at 22:00 and get up early. Today I got up at 06:30, then took a nap till 09:00 then after breakfast I took another nap till 15:30. I don't think sleep tonight will come easy.

My good leg has been swollen for about a month. The Oncologist gave me some diuretics. They seem to help. But the leg is also very red, and the toes are white. With my IR temp detector, I found my thigh was 29.4C, my red lower leg was 32.5C and my toes were 25.6C. I have been sending pictures of my leg to Maddie for about a month, and we went back and checked them. The red area is growing up the leg. Tomorrow we go to a doctor. There are many things that cause a red, hot area on the lower leg. Some are serious.

The last few day have been chilly here. I am wearing a sweat suit. The low today was 15C (59F, 288K) and the high today was 18C (64F, 291K). It has also been raining lightly for the last few days, and I have not put the leg on for 2 days, which has helped with the PLP.
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