June 26 2016 - No News Blog

Very little has happened since my last blog.

There are so many people trying to help me with my prosthetic problems, in so many ways, but I am still in the wheel chair, and still have deep strong pain in my stump. It is sad.

I went for x-rays, and a sonogram on the stump. My surgeon also saw my good right leg,

and he got very worried about it, so I had x-rays and a sonogram on that leg also. The calf muscle is very hard. As if there is a blockage somewhere. The toes are a constant 10 degrees C (18F) lower in temperature than the thigh.
The x-rays, and sonogram gave good news and bad news. Good news was no physical injuries in either leg. No tumors, visible damage, blockage, and no blood clots.
The bad news was that the cause of the stump pain is still a mystery.

It is now 14 days since the stump hurt itself. It is a bit better, but still a long way from able to get a prosthetic socket on.
Today with only a nylon compression stocking on, I tried to put the socket on. It made it in about 10 cm (4 in) then the pain started. I then tried my old socket that was replaced because it was too big. It also hurts, but not as bad. The silicone liner is much thicker than the nylon compression stocking, so it would be much more painful with the liner on.

My prosthesist has loan of a fancy bionic knee that I can use for 2 weeks. I am sad that such wonderful opportunity is wasted.
My Brother has bought an old, worn, leaky Total Knee 2100. If we can somehow fix it up, I would then have a super knee. But I can't even get a socket on. Grrr!! :-(

I read online about a woman that also had a similar pain to my stump pain. She said:

Things were looking good, but then about a month later, disaster struck.  A sudden pain in the back of my stump caused me to stop immediately and I could walk no more.  I had to be helped and could not even walk or put my other leg on  – the pain was so intense.  From then followed six weeks where I could not walk, I was back on crutches and could not work.  I was devastated.  Worst of all, nobody could really tell me what I had done.  It was put down to nerve pain and I was on a lot of painkillers.  It turns out that it was probably a muscle tear. Eventually, after about six weeks I could wear my walking leg for a few hours a day pain-free until gradually I could wear it all day.  But, I had lost a lot of muscle strength in my stump and that had to be built up again.  

So quickly things can go so wrong. That will make me wary of doing long walks, or doing anything on my own.

One thing I am very fortunate about, is my love of programming. So the last few weeks stuck in a wheelchair have given me lots of time to work on programming different algorithms for the routing of train, internet packets, and chess pieces. I have truly enjoyed doing that.
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June 18 2016 - New Pain

I haven't blogged in a while. The feelings, and thinking's lately have been something I just don't feel like sharing.

About 4 days ago while walking in the kitchen with my prosthesis on, I got a very sharp, stabbing pain deep inside my stump. I could put no pressure on the prosthesis. I finally sat on the floor and removed the leg, then slid on my ass across to the wheel chair.
What would I have done, if I was in the States, out watching bears, or walking on the ranch?

Now 4 days later, if I grab the stump thigh gently, and pull the skin up toward the hip I get a very sharp pain deep inside the stump. I can slap and roughly massage the stump end, and all seems fine there. But moving the skin up toward the hip is excruciating. My little brain says there is damage from the end of the bone to the muscles that were cut off during the amputation. Pulling the muscles up into contact with the bone is when the pain occurs.
I have not been able to get the silicone liner on, and the thought of putting on the socket makes me cringe. The socket would be extremely painful to get on, as I would need to shove my stump down inside the socket.
When the socket is on correctly, all my weight is on the skin of the thigh. Now, even a few ounces of pressure pulling the skin toward the hip is painful.
 I called the surgeon to make an appointment, and they said the next opening was a month away.
I have been gentle as possible for the last few days, hoping it will heal. But today it is worse than before.

So I am wheel chair bound, or crutches when necessary. Without my prosthetic leg, my world has just gotten much smaller.
If it is still bad on Monday, I'll either go to see the Surgeon and wait, or go to the emergency room, and have them call him.

My life is so complex, and dependent on things out of my control, that I think planning anything beyond what to watch on TV tonight, is futile, and tempting fate.

People ask what my plans are.  I never planed on having cancer, and did not plan on not losing a leg. Plans, and the future are not on the same page.

I am living amongst a flock of Black Swans. All the plans I was making to visit Maddie in George, and visit friends in America, were maybe just "poking the fate bear".
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June 8 2016 - A disappointing day

My prosthetic leg has been in the prosthetic hospital for a few days. I went to get it this afternoon.
I arrived at the prosthetic shop to see Bradley busy opening a box with a Total Knee 2100 in it. The knee arrived from the  factory in Iceland this morning. I was looking forward to using the knee for a few weeks. The 2100 is the main athletic Knee used in the special Olympics.

Yesterday they moved the attachment point on the bottom of my socket. This means that all previous adjustments are lost. They had to re carbon fiber the attachment point.

Today for the first time Bradley got to try out his new computerized painting machine. The machine painted the Texas flag on my prosthesis. It was bright and clear.
Then they applied the last coat of clear plastic sealant, and the colors all faded and blurred. :-(

Then they had to cut the holes in the  socket to allow the inside liner to stretch in the spots that give me the most trouble. Cutting the holes made the flag not look a flag anymore :-(

At least it has a Texas motif.

I put the leg on, and tried to walk. After a few steps, one of the fittings came loose. I was between the parallel bars, so I didn't fall. They replaced the faulty part, and I walked again. Soon the same fitting came loose again.
I now have a new fear, of something coming loose on the leg while I am using it. It made the leg instantly, totally, unstable, and almost guarantees a fall. If I was walking fast, I could get hurt bad.
The part that the suspect part connected to was the actual faulty part. They finally got the parts working, but the leg just wouldn't adjust properly. It felt all wrong.
Next we tried to get the 2100 knee adjusted, but it was not possible. After way too long messing with it we found out that it had no hydraulic fluid in it. From the factory, with no fluid in it! GRRRR!!!!

So we had to put the 2000 Knee that I have been using back on. It was loaned for 2 weeks, which was up today. My Mauch Knee is still in Iceland for repairs.
Fortunately, Bradley was able to keep the 2000 knee as a loaner for another week. After that I don't know what I'll do.

We worked adjusting the 2000 until way after closing time, but never got it right.
We both feel that the new position where the knee attaches to the socket is at the wrong angle. This whole adjustment thing sounds like a screwed up way of doing things. The angle has to be +1 to -2 degrees. That is a very fine adjustment. It seems silly to get this adjusted to within a degree, the go walk on a sloped road, or on uneven grass.
Bradley says we need to try a fitting that allows the real time re positioning of the place the knee attaches to the socket. He will try to get the fitting from a friend on Friday.

In between the different tests and adjustments, I got to talk to the accountant lady. She says that Medical Aid will pay a certain amount for maintenance and replacement of prosthetics. She said that maybe after 4 years I could get an up grade from the Mauch Knee. Probably to a Total Knee 2000. I reminded her that I have Angiosarcoma hanging over me, and that waiting 4 years between upgrades is probably not going to happen.

This just re-enforces my need to get to America, and sell my assets there, so I can afford to buy a better knee.
The Accountant lady also mentioned that the factory in Iceland promised again, that I can have a Rheo 3 Knee to try out for 2 weeks from the 22nd of July until the 8th of August.
I hope the factory doesn't screw that up like they did the 2100 knee.

https://www.ossur.com/prosthetic-solutions/products/dynamic-solutions/rheo-knee-3

While heading back home, I found that the new foot angle made my prosthetic foot stay under the brake pedal on the car. So pushing on the brake, doesn't move the pedal, because the foot blocks it. Normally I can push it aside, but not now. So I had to take my leg off before I could drive home.

Oh well, At least I am alive and safe for the present.
I can walk on my leg the way it is, but it sure feels unsteady.
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June 7 2016 - Life update, and prosthesis update.

Ten days since last blog.
Four of those days were at the prosthesis shop getting my socket reworked. My socket problems are now getting almost trivial. I am not concerned with walking, but concerned with walking fast for 5 km. A very small miss fitting of the socket while moving around the kitchen, can becomes a major problem when walking 5 km.

Last Saturday I did another Park Run. I finished in 1hr 24min. That is about a 25% improvement from the  run a week before. At that rate of improvement, I will break the sound barrier in just under 6 months. (26 weeks)

At the prosthetic shop I met a man with a left leg, above the knee, amputation. He lost his leg 5 years ago. He spent one year on a Mauch Knee, one year on a Total Knee 2000, and now uses a bionic Rheo Knee. I asked him a ton of questions in just a few minutes.
He is about 30 years old, and a livestock auctioneer. He spends 5 days a week walking among cattle, sheep and pigs. He is on his feet the whole day. He says the bionic knee changed his life even more than when he got his first prosthetic leg. He says the bionic leg doesn't even need thinking about. He puts it on in the morning, and next thinks about it that night when he takes it off. He said to "Don't try one unless you have cash to buy one."
The hardest thing for him was walking up and down the many ramps. Herding cattle into trucks and out of truck into pens. He said that ramps are shit things, literally. With the Total knee 2000 and the Mauch knee he battled. With the Bionic Rheo Knee he doesn't even think about them.

One thing you have to understand about prosthetics, is the "K" rating. Medical aid societies had to have a way of grading the potential for an amputee to use the prosthesis. They don't want to pay for a super expensive prosthesis, that will only live in the closet. They developed the K rating to describe an amputees mobility potential.
K1 - Inside the house, usually with a walking aid.
K2 - Slow walking around the neighbor hood, and ability to navigate small obstacles like curbs.
K3 - Long walking, and ability to go up and down stairs, usually step over step.
K4 - Athletics. Like Running, or Tennis.

If you are a K1, then the medical aid will not buy you a super running knee.
I am a K3.
The livestock auctioneer is a K2. The Bionic Rheo Knee is for K2 amputees. It is not an athletic knee. No bionic knees are rated for K3 or K4.
The Total Knee 2000 I am using now is a K3 Knee. The Mauch knee is a K2/K3 knee. There are very few K4 knees.
The K rating does not mean it is a better knee, or costs more. But it signifies usage. A K4 knee may be a problem in the kitchen because it needs to break loose easy and quick. Not very stable when reaching for a cup of coffee.
Of course, the best would be to have many legs, for different purposes. A K2 leg for weekend bar-b-ques or office work, and a K4 leg for sports.
 The auctioneer still uses his old Mauch Knee leg when he goes Bass fishing.
He isn't on Medical Aid, but has a rich father. The Bionic Knee cost almost 5 times what the Total knee 2000 cost him, and that was much more than the Mauch Knee.

I took my leg in yesterday. I am legless today and tomorrow. They are doing many mods to the leg. They are cutting holes in the socket. They put the socket in a laser scan machine, and it finds stress paths. Where there is no stress, they will cut holes. I think there will be 4 holes cut. Each about the size of my fist.
Since this socket has a thick silicone liner in it, the stump will be able to expand where the holes are cut. this will allow me to wear the leg much better in the morning when the stump is still swollen a bit. Now it takes 1 to 2 hours until my stump will fit all the way into the socket. Only then can I walk without limping. The holes should also reduce the chance of "hot spot" pressure points that may cause blisters.
They are re positioning the pylon attachment point to bring my feet closer together while standing. The closer my feet are, to my center of gravity while walking, means much less wasted energy.
My prosthetist found a used Total Knee 2100, and he will put it on, and let me use it for 2 weeks. :-) The Total Knee 2100 is an upgraded Total Knee 2000. It has larger hydraulics, and more adjustments. It is a K4 leg. Many of the special Olympic runners use a Total Knee 2100.
The best news is that Ossur will loan me a Bionic Rheo Knee. We will put it on in 2 weeks when the Total Knee 2100 comes off.

I would love a K2 bionic knee for going shopping, or trips to the mall. But I need a K3 or K4 knee for Park Runs.
In the back of my mind is the selling of my house in Texas, and the RV in Florida, so I can buy a good knee.
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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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