May 20 2016 - Testing the Total Knee 2000

14:30
Last Wednesday they took a new plaster cast of my stump. Bradley first measured my stump circumference, and said it is much smaller, and time for a new socket. We are not sure if this will be the final socket, or just another temporary socket on the path to a permanent one.
The constant wearing of a silicone liner, or a sleep shrinker sock gradually reduces the volume of the stump. Some people have a stump that looks like a skin covered bone. My stump varies in volume more than most. That makes it hard to fit snugly inside the socket.

Here is the nylon sleeper sock I wear at night. This is necessary to make the stump small enough to fit in the socket the next morning.

 If I don't wear a liner for a few days, then my bare stump is so large, that it won't even fit in the socket. If I wear a liner and wrap the stump, then the next day my stump is so skinny, it goes right to the bottom of the socket with little touching of the sides. This variance in volume is why I use stump socks. Stump socks  are toeless, fluffy, wool socks that are used to increase the volume of the stump.

Stump socks like these go between the stump liner, and the socket.

A tight, snug fitting socket makes feedback from the prosthetic leg much more sensitive. I can easily "feel" the leg when it hits the ground, and I can "feel" if it is locked before I put weight on the leg. Each layer of stump socks reduces the sensitivity, and makes the leg feel more "sloppy".
Also having layers of wool sock between the leg socket, and my stump makes the alignment of the leg to be less precise. The prosthetic leg is allowed to rotate on the stump more than a tight, snug socket would allow.

I normally wear 3 stump socks now to get a tight fit. I am looking forward to the new socket that should require no socks. Of course needing no socks, also means that a slight swelling of the stump may prevent the stump from being able to fit into the socket. A smaller socket means more control and feedback when everything is working as should, but also means less variance is allowed in the volume of the stump. Socks can add volume, but nothing can reduce the volume except constant wearing of some kind of stump shrinker.

While I was at Bradley's, his next patient arrived, a 5 year old boy. The way this boy was zooming and jumping and climbing left no doubt that this kid was used to his prosthesis. He lost his left leg below the knee about 2 years ago. while I was getting my leg on, he came over, and swung on the parallel bars. He looped his feet and lower leg through his hands, and hung by his knees. Cool to see.

Today I decided to give the Total Knee 2000 a good walk. I walked about 4 km in 1:20. The total knee swings forward much easier than my Mauch knee. It also feels more stable once it is down and locked. The ease and quickness of change from locked to floppy still worries me. But I never stumbled or fell.

This short video shows how easy the Total Knee 2000 locks and unlocks
https://youtu.be/m6Mjxi1Wm9U

One thing I did notice was while walking with my Mauch Knee, I sometimes hear the toe scrape the ground. Just a slight "swish" but enough to warn me that my attention is not all there. Today the Total Knee never did a swish. The fact that it shortens the leg on swing forward is a welcome, noticeable, characteristic.

Maybe tomorrow, I'll try a walk to the mall.
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May 17 2016 - New (To Me) Knee

17:00
I just spent a few hours with Bradley, my prosthetic guy.
The loaner Mauch knee was swapped for a loaner Total Knee 2000. A totally different concept in prosthetic knees.
My own Mauch Knee is still in Iceland getting repaired.
Tomorrow I will spend many hours with Bradley. I need a new socket. He wants to do completely new measurements as if from scratch. So tonight I will wear the silicone liner, AND in addition, I'll wrap the stump,  so that tomorrow it will be as small as possible.
The current socket is too big. I have to use 3 wool socks between the liner and the socket just to get it to fit. But that means the socket is more "sloppy" and doesn't fit tight.
With this new knee, I can feel the stump banging into the sides of the socket. Like a bell clanger.

The Total Knee 2000 is a polycentric knee. It uses lots of funny mechanical motion to do a few things.
It more mimics the motion of a real knee. The bottom part slides back as the knee bends, just like a real leg. It polycentric design also makes the leg get shorter as it bends. This makes it less likely to catch the toe on something because the leg is shorter while the leg is swinging forward. It also makes it lock much more solidly than the Mauch knee does.
The Mauch Knee uses hydraulics to cause resistance for the knee to unlock. So if it does unlock, it gives a warning of increased resistance in bending. You will still fall, but you have more warning, and you fall slower.
The Total Knee 2000 has like 2 possible states. Locked solid, and floppy.
The lock is much more positive than the Mauch Knee. With any weight on the heel it is locked solid. Very secure. Put weight on the toe, and it is floppy loose. Like no resistance to fold up.

Here is a short video showing the Total Knee 2000 motion.

https://youtu.be/FO_BTNMnJFM

I am actually fibbing a bit. The Total Knee 2000 has a very small hydraulic reservoir than feeds some small orifices, that create slight resistance to motion. I can't feel it, but the book says it is there.
The Total knee also uses colored rubber blocks to create the resistance to breaking loose force when standing with knee locked. This makes it easier or harder to enter floppy mode from locked mode.
The Mauch knee does all that with hydraulics.

Bradley has just been on an Ossur conference. There they told and showed all the newest innovations by the company. The companies newest prosthetic is called the "Pro-Flex". It is an intelligent ankle and foot unit. It allows 27 degrees of movement to the flexing of the ankle. It progressive increases resistance to the flexing to allow the weight to be on the toe, or on the heel. They claim it allows walking up and down slopes.
But it is still VERY expensive. To many zeros on the right of the price.

At the conference were many people from the different medical aids. Ossur showed many statistics regarding above knee amputation co-morbidities. They gave lots of examples and statistics showing that a medical aid paying extra for an active ankle actually saves the medical aid company money. Many above knee amputees soon have problems with the good knee because of the added stress put on the good knee. The Pro-Flex ankle reduces stress on the good knee by up to 70%. They also showed that a knee brace on the good knee saves money in the long run.

I'll know more tomorrow. Now for drugs to stop the PLP.
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May 12 2016 - Getting off drugs.

01:10
I haven't been blogging lately.
All my friends are doing exciting things, and I am doing nothing exciting at all.
I have friends going on an ocean cruise to Alaska.
I have friends receiving awards, and traveling America.
I have friends going to Ireland with family.
I am trying to get off Lyrica and Cymbalta. Boring!

After 6 weeks of gradual reduction of both Lyrica and Cymbalta, I am now taking neither. This may sound like a big deal, but here I sit at, one in the morning with itching all over, and just enough PLP to not be able to sleep.
I fear that it will take a long time to get over the Lyrica withdrawal symptoms.
Last week I tried to take no pain killers, and no muscle relaxers before bed. I found myself itching all over at 2 in the morning. Then a few pain killers and a sleeping pill finally took the itching away after a few hours.
Last night I tried to take no pain killers, and no muscle relaxers again. Here I am again, itching all over, and not able to sleep. Doing this means I finally get to sleep around 4 or 5, and sleep till noon. My whole life is out of sync with the rest of the world.

I have been wearing my leg every day for about 5 or 6 hours. One problem I have now, is that the stump has shrunk enough that I have to put 3 thick wool socks over the stump to make it fit snugly  in the socket.
Wearing thick socks, seems to reduce the sensitivity of feedback while walking. It makes the whole experience even more un-enjoyable than normal.
I do seem to be able to easily walk about 2 to 3 kilometers with out stress. My walking speed is slower than a few weeks ago. A more leisurely pace, but more sustainable. Not really exercise as much as just going for a walk. If I just go for a walk, I seem to do about 2.7 or 2.8 km/hr. When I walk fast I can do 3.2 km/hr.

I have had a few scares lately, but I can't call them falls, as I never got to the ground. But they were loss of balance enough to make me fall toward the ground. Both times something stopped the fall.

My stump starts to chaff between the silicone liner and the stump after a few kilometers. Before I walk I smear glycerin around the top of the liner in the groin area. This helps, but does wear off. I tried some stuff called BodyGlide. It is an anti chaffing "solution" that comes in an applicator like deodorant. It is used for runners and fat people to lubricate the skin where ever it rubs.
What a waste of money. Some people on the internet rave about how it is like Teflon for the skin. It feels more like contact cement to me. I will still use glycerin until I can find something better.
The anti chaffing gel/cream/liquid must not get wiped off, and must be sweat and water resistant.

My prosthetic guy, Bradly, called yesterday. He found a loaner "Total Knee 2000". The knee I am using now is a loaner, while my knee is getting repaired. But it is the exact same model as my own knee is.
I am looking forward to trying another type of knee. The Total Knee 2000 is a whole different philosophy and engineering design from my normal knee.
The Total Knee 2000 should be a better knee for around the house, where my knee is more a walking knee. Most of my falls, or scares have been taking small little steps, or just shifting my body around.
The Total Knee 2000 is best when walked at a specific cadence and gait.
I am anxious to try the Total Knee 2000. Not because I want to own one, but because one of the best knees available (KX06) is a combination of my Mauch Knee and the Total Knee 2000. That combination "sounds" like the best of both knees.
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May 7 2016 - I used to like ants.

02:42
I went to bed at about midnight.  I wasn't sleepy.
At 02:00 I awoke covered in crawling ants. They were all over me. I started slapping them and trying to get them off. They seemed to cover my entire body. I turned on the light, and there were no ants. But I could feel them everywhere. I wheeled into the bathroom to use the mirror. There were no ants. But I could feel them crawling all over me.
Now I was wide awake, and my heart was pounding. I went into the kitchen and turned on all the lights and got a small mirror to re check.
 No ants.
I itched everywhere there was skin, and even places with no skin like my left leg. I sat calmly and tried to think the itching away. Nope, it was real.
I took a Tramacet, and popped out another in case I decided to take it later. I decide on a Robaxin also, because of the twitching and jerking. Now almost an hour later the itching is still there. Even my non existent left leg has the sensation of crawling ants.
But now I wonder if I need pain killers to deaden the nerves, or a Lyrica or Cymbalta . The itching is probably a withdrawal symptom from them.
This withdrawal symptom is because of drugs for PLP, from an amputation, because of cancer. So many facets of my life have changed because of Angiosarcoma.
I believe that people should be willing to accept the consequences of their actions. The consequence was cancer, but what was the precipitating action that launched the cancer? Always more questions than answers.

I just heard 2 gun shots. Sounded like a pistol. Not far away, but not to close either.
Hmm..Maybe a good time to clean my gun.
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04:15
My 9mm is now super cleaned and oiled. I am ashamed. It was so dirty and dry.

Now I don't know whether to try to sleep again, or just stay up. The Tramacet, Lyrica and Robaxin seemed to have calmed the itching. I fear the Lyrica did most of the cure.

I am to stupid now to work on my Arduino project. Yesterday I got the voice recognition unit to talk to the Arduino. Next is to change the voltage out of the Arduino to a voltage that my relay board can see.
 I dug through the shed yesterday, and found all the boards and boxes I had built, and used, about 13 years ago to make my house voice activated. I had a desktop computer that could recognize different voice commands, and an analog to digital board to control eight separate lights and fans in the house.
Here is a picture of my old project. (minus the computer)

And here is a picture of the current project.

I want to do the same "voice controlling the house" thing now, but with 13 years newer technology.
I will use the same relay board. The lower blue board is the Arduino, and the upper board is the voice recognition unit. The small blue board on the right (that I bought yesterday) is a voltage changing board to change the Arduino output voltage into what the relay board needs for input.
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05:02
So this blog is about ants, guns, electronics, smart houses, pain, drugs, amputations, and Angiosarcoma.

Maybe I need some hot Horliks. then I'll try to sleep.
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May 2 2016 - Less Lyrica, More PLP

01:00
Whew... what pain! My stump is jumping around. LOTS of PLP. I was in bed at 10:30. But wide awake by midnight. I am drinking Horlics and listening to LOUD music. I only got 2 hours sleep last night, and I am so tired and sleepy. It looks like tonight will be about 2 hours sleep also.
This sucks. It is so hard sometimes, to remember why I allow this to continue.
Surely this can not be part of some "bigger plan".

Cutting back on the Lyrica and Cymgen makes my brain more of my own now, than for many past months. But at what cost? I just took my first Robaxin ( muscle relaxer ) in about a month. I also just took another Tramacet pain killer.
I fear a Lyrica and Cymgen is what I really need, but I am doing so well getting off them, I don't want to screw up the good brain. So I take opioids? Duh! Who am I kidding?

It is cold today. Yesterday morning was 8 C. ( 46 F ) Winter is coming.
I sit here in long johns, fluffy sock, and a balaclava.

I just bought online R300 data airtime for my internet. I bought R300 a few days ago, but had to download lots to try to get my project up and running.

My new project is to make some parts of my house to be voice controlled. Like turning on lights and fans with voice only. I am using an Arduino. I can program the Arduino using my Linux computer, but the voice programming library is a windows only trick. Nothing in my house runs windows.
So I am having to visualize Windows XP in my Linux desktop. I really battled because there is not a lot of support for XP anymore. Yesterday my computer power supply quit, and I had to buy another and replace it. But a whole day finally got XP with Service Pack 3 running in a virtual machine.

Next was to load all the Arduino libraries, example code, and IDE. (Integrated Development Environment)
All that was about 2.5 G of downloads.
There are many tutorials on the internet. But they all assume that I know what I am doing. That is not always the case.
My next task was to get the USB port working on the Virtual machine. That was a convoluted process.
The Arduino is programmed via the USB port.
My next mission will be to make the Arduino listen to me talk. It knows 24 preselected words, but can also learn another 32.

My good leg is swollen, dry, red, and itchy. I just rubbed Volaren on it.

In April I walked 24km. This week I have walked to the local shops 3 times. It is 1.8 km there and back. Not a long walk, but it does get me out of the house. Putting on the leg is a pain in the ass compared with zooming around the house in the wheelchair. I am becoming a house hermit.
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03:30
I am not hungry, but that Robaxin will tear up my stomach if I don't take it with enough food. So I am eating a peanut butter and jelly sandwich. That will fatten me up some.

"Does anyone know, where the love of God goes,
when the pain, turns the minutes, to hours."

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April 29 2016 - Ground hog days

09:00
How did I sleep last night?
See previous blog.
What did I do yesterday?
See previous blog.
It is like I am living the same day over and over.
Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Wash dishes. Eat. Take drugs. Play train game. Watch TV. Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Do laundry. Eat. Take drugs. Play train game. Watch TV. Go to bed at 22:00 and fight PLP until about 02:00 then sleep till 10:00 the next day. Wake up have an egg and coffee. Take a nap. Wash dishes. Eat. Take drugs. Play train game. Watch TV.

Today I am setting a goal of getting all my Arduino stuff out, and getting it hooked up to my Linux desktop so I can start programming the Arduino. I want to make the Arduino be voice activated to control my house.

The prosthesis seems to be relegated to doing walk duty only. In the house, it is so much easier to use the wheelchair.
It really is a pain to put the leg on and take it off. But today I need to go out to the shed to get some cables for the Arduino. If I am going to do that, then I might as well do laundry. I need the leg on for both.

Also today my TENS (Transcutaneous Electrical Nerve Stimulation) unit should be delivered. I need to go to school on using it.
My friend (Google) tells me that Doctors and Physiotherapists say to not use a TENS unit for more than 20 minutes. One hour is Maximum. But many people on the internet use it constantly. It seems to me to be whether the pain is muscular, or nerve only.
Sciatica is 100% nerve pain, but most back pain is muscle cramping. 20 minute should be enough to stop a cramping muscle. Stopping nerve pain is different. TENS only works on nerves while it is actually on.
--
Here is my Arduino project so far...

Notice the empty TV tray. That is as far as I have gotten. An empty tray.
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April 26 2016 - No sleep

01:10
I'm wild awake. I went to bed around 23:00, but my good ( ?? ) leg was itching something terrible.
I have slight sensation in my phantom foot, but it isn't enough to keep me from sleep.

I wore the prosthesis most of yesterday. My good friend took me out to a new hamburger place for my birthday. Great burger.

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The last few days have been spent playing a train game, or, reading a book called "Orthogonal". The two may not seem related, but they are.
My train game gives a random shaped land mass, with random placed towns, and random placed industries. I have to make train systems to supply all the towns with the different industries. The train networks get very complex. Using train signals to control the trains, is very similar to using computer network routers and switches to control the flow of network packets of data.

The book Orthogonal is about everyday practical uses of Orthogonal mathematics.
Orthogonal is when changes to one attribute does not change any other attribute. If we graph two Orthagonal values, the axis on a graph will be 90 degrees to each other.
For an example:
If X = 4, and Y = 3. On a graph, we go 4 units horizontal on the X axis, and up 3 units on the Y axis.
If you change only the X value, it will never change the Y value, and  if you change only the Y value, it will never change the X value.
X and Y are Orthogonal to each other.

If :
We make X equal to the length of a box.
and Orthogonal to that, (90 degrees on a graph),
we make Y equal to the height of a box,
and Orthogonal (90 degrees) to that,
we make Z equal to the width of a box,
and Orthogonal (90 degrees) to that,
we make W equal to the color of a box,
and Orthogonal ( 90 degrees) to that,
we make T equal to the weight of a box,
and so on, and so on.
Hmm.. I think I just heard your brain snap.
I am talking about many, many, dimensions.
As long as each attribute (dimension) of the box is Orthogonal (90 degrees on a graph) from all other attributes. A change of any one attribute, will not change any other attribute.
Changing the color of the box does not affect the length. Changing the height of the box does not affect the width.

I build my computer networks (and train networks) so that if any one part of the network fails, it will never affect any other part. I try to make as many different parts of my network, Orthogonal to each other.
In my train game, I have been designing train networks where each train, and it's route will never affect any other train or it's route.
 I currently have 19 trains running in my game. Here is what one small part of the game looks like.

Then I got bored.
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02:30
I am trying to get off Lyrica.
I believe it has reduced the Phantom Pain, but it makes me lackadaisical, and stupid. The side effect of stopping the drug are substantial, and many people can't handle the withdrawal, and soon go back onto the drug.
I was taking 75 mg every morning, and 75 mg every evening.
I figured out that from a dose of 150 mg a day, it will take about 6 weeks for me to get completely off it.
Of course I am worried that as I stop the Lyrica, the PLP will come back again. Maybe even stronger.
If I have to chose between being able to think, or having pain, I will be in a lose/lose situation.

When I refilled my prescription, I asked for 25 mg capsules instead of 75 mg capsules. The pharmacist says that many people ask for the same, because they are trying to slowly get off Lyrica.

My plan is to reduce the daily dose by 25 mg every 4 days. I am allowing for some times needing to maintain the dose for 5, or even 6 days.
I am now down to 100 mg a day, and I am experiencing some of the withdrawal symptoms. My good leg skin is tender. The lower leg feels badly sunburned, and the skin is dry and cracking. My toes are almost 10 degrees cooler than my ankle.
About 30 minutes ago I took an unscheduled Lyrica, and I can already feel the sunburned, itchy feeling in my leg has reduced significantly. I will soon be back in bed.

Here is a picture of my foot.

Lyrica is evil.
Doctors that prescribe Lyrica are either stupid, misinformed, or the spawn of Satan.

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