May 28 2016 - My first Park Run on Prosthesis

This morning I awoke to the desire for a long walk.
Then I remembered it was Saturday, and every Saturday there are Park Runs through out Pretoria. (and throughout the world)

I chose the Voortrekker Monument Park Run, as I have done this run a few times (when I had two legs). My best time (when I had two legs) was 35 minutes for the 5 km (3.1 miles) run.

This Park Run is around the Voortrekker Monument. It is also in a game reserve, so I should see different types of antelopes.
The Voortrekker Monument is an Afrikaans monument to the early Dutch settlers. It is sometimes controversial because it is a monument to the same people that gave us Apartheid.
 I see many similarities, between the people that this monument is in honor of, and the people the Alamo is in honor of.

The Monument from the start line.

http://www.vtm.org.za/

I arrived at the Voortrekker Monument early, and talked with the officials. I explained that I know they only keep times up to one hour, but I would probably take 2 hours. Is there any plan we could make so I could get credit for doing the run.
Everyone was so nice. They scanned my bar-code which is normally done at the finish line, and said that I could call the head lady with my time when I finished. So refreshing to find people that just solve a problem. No Paperwork, No Committees, and No Bureaucracies.

The start was about 300 yards/meters from the finish line where I had talked with the officials. I had to rush to get all my body armor on, and get up the steep hill to the start.
I got to the start line and sat gasping. I was dripping with sweat. A lady came by and said "You do know that this is only the start, NOT the finish?"  I assured her that I was aware of that.

There were about 800 runners at the start line. The full spectrum of people was there. Some were hard core athletes, some were trying to get fit, some were trying to loose weight, and some were just on an outing with their children. There were maybe 20 people pushing prams.
Usually there are many dogs on a Park Run, but since this one was in a game reserve, no dogs were allowed.

As everyone got ready, the group of runners sorts itself out. The fastest to the front, and the children and baby strollers more toward the rear, and cripples at the far back.
I positioned myself way at the back, behind some parents with a 1 year old toddler in diapers. I asked if the child would be carried later. The man said probably, but this was the kids 3rd Park run.
I would initially just walk behind the toddler, and not try to pass him to early in the race.

The organizers gave the word, and off the herd went.

And the toddler took off like a rocket. I felt like I was in "Park". Maybe because of me, is why they call it the "Park" Run?
By the time I got to the "start" line the nearest person was about 20 meters ahead of me, and I couldn't even see the toddler. Fortunately the route is well marked because a few minutes later, I was all alone.

At about the halfway mark, I passed the finish line. (going in the opposite direction to everyone else). There was already a huge automobile traffic jam of the runners going home after finishing, cooling off, and chatting to all their buddies. Most of the people had finished. I was only about half way.

Green teardrop is the start, and Red teardrop is finish.

The first half was on fairly level ground, but the second half was up a 100 meter hill and back down from it.
I found the walking uphill to be much easier than I had expected. That meant to angle of my prosthetic foot was a bit off, and the downhill part would be much harder.

At the top of the hill, waiting, was one of the officials. He said he just wanted to make sure I was OK. I checked my GPS and saw that my time was 1:17, and my average speed so far was a blistering 3.2 km/hr.

What a unique view of Pretoria.

At the top of the hill is Fort Schanskop.

There is a very steep ramp around it that spirals down. This ramp was long and very difficult for me. For that 100 meters, my leg never unlocked. Very slow and awkward. This was followed by 200 meters of steep downhill of cobble stones. Again the leg would not unlock, and my biggest steps were the width of a cobblestone. During this section I felt blisters coming at the top of the socket. I stopped and lubed everything with some glycerin I had thankfully brought with me. Before the bottom of the cobblestone I stopped again to lube the stump. I could now feel definite blisters forming at the top of the socket.

The last 400 meters was moderate downhill. Not a problem, except the blisters were now getting worse.
At the finish line were 4 of the officials. They read out my time... 1 hr, 47 min, 30 sec.
I told them they should all be at home now, not waiting for me. They said that they normally stop the race and all timing at 1 hour. But because they waited for me, they also recorded an extra 20 people that normally would not have gotten timed. The one lady said they have to rethink the 1 hour limit. She said maybe at 1 hour they could start packing up, but leave one person at the finish line for slow people.
This would be a good thing, as anyone that finishes after an hour must really be the sort of person whom the whole Park Run philosophy is aimed at.

My average speed was 2.7 km/hr. That steep downhill really slowed me down.
The slowest part was at the top of Fort Schanskop. But I did notice that there were stairs also in addition to the ramp. I asked if I could have used the stairs instead of the ramp. The officials said yes, as it would actually have been farther, not shorter. For me the stairs with banisters followed by a flat grassy area would definitely be faster.

I finished 806th.
http://www.parkrun.co.za/voortrekkermonument/results/athletehistory/?athleteNumber=836071
 I can only get better.

But for now I am experiencing PLP and twitching. There is a burning spot above my left outside ankle. (That is the leg that is not there.)
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May 26 2016 - New prosthetic socket.

The last four days have been busy. Three of those four days were spent trying to get my new socket aligned properly.

My old socket was loose on my stump, and I was wearing many stump socks to try and expand the stump to fit the socket tightly.
Bradley made a new socket for me. It was very tight, and it took an hour to get the stump seated all the way in. He worked for hours to try to get it aligned. It would feel OK, then a few minutes later is was not OK. He told me to come back the next day.
The next day we spent a farther 3 hours trying to sort out the socket.  It was as if when weight was on the leg, it would change the alignment. He stacked the adjustment adapter, so there was twice the adjustment. I went home, but soon found that walking around the house was just not right. Whenever the leg would swing forward, it would swing to the right, which put lots of strain on my stump.
Also when I took a long step, and just the heel was in contact with the floor, as the weight increased the leg would rotate on the stump. The alignment changed as I walked.
If I took small steps so more of the shoe sole was in contact with the ground, the leg couldn't rotate, so the stump rotated inside the socket as the weight increased. This put torque on my hip and felt like someone was nudging me sideway.

Today I was again with Bradley for over 4 hours. He got out a laser device and checked the original alignment. the fore and aft alignment looked good, but as the weight changes, the side to side alignment would change. (Abduction) He took the prosthesis away, and cut off the end of the stump, replaced the attachment point in a different place, where the laser had said it should be. We then spent a long time aligning the leg from scratch. It got much better.


The fourth day was spent at a Computer Cloud conference. As with most conferences, about 95% was boring, and about 5% was well worth the effort. Also as with many conferences, the main benefit wasn't from the formal lectures, but what was learned over coffee with someone not connected to the conference.
At the risk of sounding brainwashed, "The cloud is the future of IT."
Huge data centers have sprung up throughout the world. Data Centers (DC) house many thousands of computers. You can rent these computers on an "as need" basis. If you want to do a spread sheet, just rent a spreadsheet computer for an hour or so. You get a very powerful computer, with someone else worried about doing backups, maintenance, upgrades, and hard drive crashes.
Companies like Google offer free word processing, spreadsheets, disc drives, and email. Other DC's offer these services for a fee.
All you need are a keyboard, mouse, and screen. Google or the DC,does the rest. This means you no longer need to buy a fancy high specification computer for your house. Your cell phone hooked to a DC has more power than you could probably ever afford for your house.
DCs usually also have very high speed internet connections. So if you have a huge file you want to send to a friend, you send it from your cloud hard drive to your buddies cloud hard drive at unimaginable speeds. On of the DCs at the conference bragged about a 24 GB/s data rate.  In South Africa the average DSL line has a 375 KB/s data rate. For the math challenged, that is 64,000 times faster.
Most DCs offer the service of hooking up two separate networks ( your Hong Kong office and your New York office) together into one network. Now intra company communication is lightning quick.

I would like to do a long walk tomorrow, but I have a few tender spots on the stump end. I think a few days rest would help more than a long walk.
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May 22 2016 - Cycling...or not.

I just tried to cycle on my stationary exercise cycle.
Boy do I have a steep learning curve if I want to do this cycling for real.

I need to get exercise without the risk of falling and hurting myself.
Every time I go shopping, or go for a walk, I weigh up the risk of major injury from a fall. I have a long way to go before I feel safe walking on any prosthesis.

First I have to come up with a way to hold the prosthetic foot on the pedal. The pros use cleats that attach right onto the pylon. Most amputee cyclists don't have a foot on their leg. The cleat snaps onto the pedal, and twisting it snaps the leg loose from the pedal.

 I can not afford a special prosthetic just for cycling, so I have to "make a plan".
To tie the foot on the pedal I decided to use a bungie cord. I have to get on the floor to do this. That is a mission in itself. Once tied on it looks like this.

Now how do I get my stump in the socket? The only way I found was to stand on a table with my good leg, and lower the stump into the socket. It would be easy to screw that up, but I managed to do it a few times without falling off the table.

But now a bigger problem. The leg is locked straight.

The foot is tied to the pedal, and now I need to take all weight off the leg, and break the knee loose with toe pressure. But my toe is not in contact with anything.
So I put all the pressure I can on my good leg, and try to break the knee loose with my hands, while I am balancing on the good leg on the pedal. Scary stuff.
Most of the pro cyclists use either the Total Knee 2000 with the lock removed, or else they use the Mauch Knee.
I finally get the knee to break lose, and collapse. I am reward for this effort by having my nose smashed into the cycle control panel.

Now I can make the pedals go around. The socket hits the seat every rotation. The pros have a special cycling socket that makes the socket good for cycling, but not so good for walking.

The force from my stump is pushing sideways on the socket, not down into the socket like normal. This means the vacuum is not being maintained, and the socket falls off, crashing to the floor.

The pro cyclists mostly use another way of attaching the socket to the stump. They wear a liner with a metal spike on it. This spike fits into a hole in the socket, and locks there.

So the bottom line is I need to learn to hold the foot onto the pedal, get the leg on , unlock the knee, then keep the socket on the stump.

But at least I didn't fall or hurt myself.
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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.
--
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.
--
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.
--

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.
--
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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