May 25 2018 - Prosthetic Accessory Test

It has been a month since my last blog. Not much has happened, but what has happened has been depressing, and exciting.
Friday 4 May 2018
My socket had been bothering me, so I visited my Prosthetist. He had a bunch of new "Toys" for me to try out for my prosthetic leg.  :-)
Toy1 - A rotation adaptor is a device that fits between the socket and the knee that allows the lower leg to rotate. While sitting, this allows the lower leg to be twisted 360 degrees. I can rotate at the knee and put the foot right in front of my face.

This guy is using a rotation adapter

I personally could not find any use for it, other than as a party trick.

Toy2 - A screw that replaces the normal pylon, so I can lengthen and shorted the pylon. This looks like something I could really use.

During the ParkRuns, I battle when the terrain slopes down from left to right. My left prosthetic leg is always way to long, and that makes walking very difficult. If I could shorten and lengthen the leg easily it would help me lots.

Toy3 - An ankle device made for ladies that change their heel height often. If the heel is thicker/taller, then the toe will not have pressure on it to break the knee loose as I walk. High heel shoes mean the prosthetic knee will remain stiff. This problem is also evident when walking down a hill. My weight never transfers to the toe as I go downhills, so the knee never bends.

This device changes allowable heel height (actually the angle of the foot) with the push of a button.

This is my old fixed ankle.

Heel height Variable Ankle.

You can see the big white button on the side. Pushing it releases the foot, so the angle can be changed. It only is variable for about 10 degrees, I wish it did more.

Toy4 - An extension assist. This is a spring and cable assembly added to the inside of the knee to help push the knee into the straight extended position.

It takes pliers and about 5 minutes to install. There are three different strength springs. 

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On the ParkRun I was doing that Saturday, there is a 1 km section where shortening the left leg 1.5 cm would help, and a 1.5 km section where a 3 cm shorter leg would be nice. On the rest of the run, a normal length would be best.

The fancy screw pylon would only add or subtract about 1 cm to the length of the leg. My prosthetist suggested that maybe I could just lossen the bolt, and slide the pylon out of the ankle or out of the knee, then tighten it back up. I tried that and found I could safely lengthen and shorten the leg by a total of 3 cm. :-)

I Cut the pylon shorter, then marked the pylon with lines to indicate the different lengths I would require for the different parts of the run.

I decided to not use any of the new "Toys" on the Park Run because I had not practised with them.

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Saturday after the ParkRun.... 

:-( My poor stump is in such bad shape. Blisters, and lots of pain. 

The leg shortening worked well for the first half of the race. I was at the half way point 15 minutes earlier than last time. I was feeling good.

Then my stump bottomed out. PAIN.... I stopped and took the leg off and added a thick stump sock, hoping to stop the stump from going so far into the socket. That made the socket very tight, and I could feel throbbing, which means blood can not get out of the stump. After about half a km, the stump was again bottomed in the socket. Every step hurt, and the throbbing meant I could not add more socks. 

The second half of the run was on pavement, and it took me 25 minutes longer than the first half, which is on rough terrain. 

I could feel blisters forming on the stump, then the blisters popped, and soon the sweat was getting into the popped blisters. 

I finished with a very slow time, went straight to the car and removed the leg, then headed for home. Once home I could not put the leg on because the stump was so sore. Fortunately my crutches were in the car, and I could get into the house.

A quick shower, and lots of anti-inflammatory drugs, and into bed.

I was not able to put the leg on for three days because of the swelling of the stump. I had two rows of blisters, and lots of sores on the end of the stump.

The next 10 days were short walks only. I did get to try out the "Toys". The rotation adaptor was put aside. I could not find a use for it.

The screw pylon was also set aside. The sliding of the pylon in and out of the knee and ankle, worked very well, and is quicker than screwing in and out the pylon.

The extension assist ended up having a benefit I had not considered. The spring makes the leg go straight much quicker, and it slammed straight. I was able to set the extension resistance more, and then the fast extension got smoother. The biggest benefit was that the spring locks the knee as a soon as it is straight. I no longer need to make sure the knee is straight, and locked before putting weight on it.  It automatically goes straight and locks. I like that a lot. I feel much safer.

I tried the different springs. The stiffest was very stiff, and may have been ok for a hard core sprinter. The lightest spring was ok for walking around the kitchen. I ended up using the middle firm spring.

I next put on the variable ankle. I doesn't seem to have enough travel to be of any use. I took it back off, and put on my solid ankle. Then after two days I decided to try it again. It weighs more than my solid ankle, and I can feel the extra weight. It does seem to help some when walking down hill, because I can lower the toe, and that allows the knee to break loose on downhills. But then I took it off.

Then a few days later I put it back on. Duh!!!

I went to a place that had a long wheel chair ramp. It is about 10 meters long, and is exactly a 10 degrees slope. 

I set the ankle so it is good for flat ground when the toe is at the farthest up position. Then before going down the hill, I push the button, and stomp on the heel to force the toe as far down as it will go, then push the button again to lock the ankle in that position. With the toe down like that it is very hard to walk on level ground, but I can walk normal down the slope. That is very nice, because I normally have to walk down slopes with a stiff prosthetic leg because the knee will never break loose. With this variable ankle set to max toe down I can do the wheelchair slope easily. 

The price of the variable ankle is about R12,000 ( $1000). 

Yesterday I went to get measured and fitted for a new socket. Hopefully it will not be one that allows bottoming of the stump.

The new variable ankle is almost one cm longer than my fixed ankle. I need to shorten my pylon, so it will be adjustable like I did on the ParkRun. But since I am getting the new socket in a few days, I will wait before cutting the pylon.

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Nov 19 2016 - At Deland Fl.

07:07 Friday 18 November

I am listening to the Daytona Beach news on the radio.

I am safely in my RV on my buddy's property way out in the boondocks near Deland Florida.

The temperature is cold. About 6C (45F).

I was very fortunate, that the last night I spent in the RV, 2 years ago, must have been a cold night, because I had left winter sheets and many blankets on the bed. Very welcome last night. I was too tired to do any housekeeping. I did a quick cold water sponge bath and went to sleep. I slept 11 hours.

Sleeping in the RV is similar to camping. I usually have all windows open, I can hear all sounds.

It is so quiet this morning, I can hear branches breaking on the many trees. This property is magical. How my buddy can own this property, and NOT live on it is one of life's mysteries.

My buddy had the RV electricity plugged in, and the water and sewage hooked up.

The truck battery was bad, so he replaced it. Aren't friends nice? :-)

The two large house batteries are both dead. I will try to add water, but I think they are not recoverable.

OH!!!..A mother bear and 3 cubs just walked past. That must have been the noise of the branches breaking.! I love this place!!

The cubs ran and raced WAY up into a big tree.

It is amazing how paranoid the mother is. She jumps at every noise or sound, yet ignores the fact that the cubs are hanging from a branch way off the ground.

I can't see the cubs, they are way up a tree. The mother is just walking around under the tree.

The flight was long. I had the prosthetic leg on for about 38 hours. For most of the flight, I had the socket very loose, and pulled almost off.

Last night when I took off the silicone liner, I found 4 blisters. One is a blood blister. Today will be a rest day for my stump.

This morning my whole stump is sore. It was abused for sure.

The radio says that this weekend will be cold. Low about 4C (40F) and the high 20C (65F).

The cubs are still playing in the tree. Chasing each other around from branch to branch.

Delta Airlines was great. They assumed command of me the whole way. Traveling by wheel chair is very limiting. All their wheel chairs are built so the passenger can't get in or out of the chair easily, and the brakes are controlled in the back by the pusher. When they parked me someplace, they say that someone will come to get me, there is actually no option except to just sit. I did no shopping or anything fun on the trip.

The only way to pee was to ask the pusher to take me to a toilet.

The out bound flight from Johannesburg had 36 wheel chair passengers. This causes quite a problem for the airlines. I was talking to the Air hostess, and she said this flight is called the miracle flight. She said of the 36 wheelchair passengers that get on in Johannesburg, only a few will be in wheelchairs when the flight lands. The others will just walk off with the other normal passengers.

Sure enough, when we landed at Atlanta, there was a whole fleet of wheelchairs waiting, but only 8 of us used wheel chairs from the airplane in Atlanta. The other “patients” were miraculously cured during the flight. People take advantage of anything they can.

Handicap services is actually more of a “Fat and Lazy” services.

All the cubs are coming down from the tree.

They are running into and out of the thick brush. They definitely are NOT in stealth mode.

Does a wild bear shit in the woods? Absolutely, positively, 100%, without a doubt, a wild bear DOES shit in the woods. More precisely, a wild bear shits by the passenger door of an RV, that is parked in the woods.

I can also confirm, without a doupt that bears don't like it when you make coffee in a microwave.

--

A friend just called. She is bringing over a picnic basket for me. Essential foods. :-) Aren't friends nice. :-)

Yesterday I drove my buddies car to WalMart for a quick shopping trip. My stump had shrunk lots, so I put on 2 stump socks while still in the parking lot. As I walked into Walmart, a lady came up and told me, “Your leg is too long, go see these people, they can help you.” She handed me a business card. Volucia County Amputee Support Group. Cool. I would like to try some of the Amputee training events. The have obstacle courses, and show you the best way to conquer each obstacle.

That would help me lots.

The mother bear just walked out of the bushes, then around the RV, then back into the bushes.

Her and the cubs were within 20 meters of the RV for over an hour and a half. :-)

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11:10

Three grown up bears just walked past the RV. Not near as cute as the cubs earlier.

I have very limited cell phone coverage out here on the property. I usually have 0 bars, but everyonce in a while, I get 1 bar and stuff gets downloaded.

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11:30 A big male bear just walked past.....I guess it is a male. It asserts itself like a male.

Wow 8 different bears in 4 hours.

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21:15

Another single bear...Maybe the same one...it is hard to tell. I need a paintball gun, and then color code them :-)

18:05

A friend came over and brought some food for me. :-)

We chatted for a long time. She is a keen cyclist, and also does war re-enactments. In a few weeks a WW2 training re-enactment will be held on this property. It is German versus Americans and New Zealanders. She will be a German Nazi Bicycle message delivery expert.

I will be right in the middle of WW2. I need a Swiss neutral flag for my RV, or a big white flag. :-)

The news says it will freeze this weekend

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Saturday morning 07:30

Brrr...

I see hunters are here on the property. It must be deer season.

There are many squirrels. I used to feed them.

Last night, my buddy brought by his car for me to borrow for a few days. I have lots of shopping and running around to do today.

I need to make some changes to the RV. Some things are very hard for me. I removed the shower doors, and the door to the bathroom. I still need at least 2 grab bars to be able to safely get onto the toilet. I want to build a seat across the bath tub to allow me to sit in the bathtub to shower.

I better get my leg on and start the day.

I'll mail this blog from one of the many wifi hot spots in town.

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Oct 15 2016 - Life getting Real.

I have just spent lots of money, and bought plane tickets to the USA.
 I leave South Africa in the middle of November, for Daytona Beach Florida. I should be back in South Africa by May-ish 2017.  I bought tickets that I can change the return date up until November 2017. That would be a whole year away.
If I feel that I can return to my old life style of 6 months SA and 6 month USA, then I would want to be in both places in summer, NOT winter. That means staying till November 2017 would put me back in the right cycle.

I have some Oncology tests next month, on the 9th Nov and the 10th Nov. Assuming these are OK, then by the following week, I'll be in Daytona Beach.
My Florida buddy says he will fetch me at the airport, and take me to the RV.
His House, and the RV both survived the Hurricane.
 Some guy on TV in South Carolina, was asked if his house was damaged by the strong wind from the Hurricane. He answered that there was no wind damage at all, because his whole house had been under water. :-)

I am very concerned about wearing my prosthetic leg for so long during the flight.  It will be 34 hours from my Pretoria house, to the RV in Florida. After about 5 hours, I usually want to take it off. :-)
I will need many stump socks to enlarge the stump as it shrinks.
I have spent a lot of time with Delta Airlines on the phone, trying to get a good seat, and arranging everything. They want to take the prosthesis and check it in as baggage. I definitely don't want that.
I will start wearing it longer and longer each day, to try to be ready for the trip. If I get a seat with plenty of room, then I will be able to take the prosthesis off and hold it in my lap. If I get a seat with very little room, then I will still take the prosthesis off and hold it in my lap. :-)

I haven't planned enough regarding my transport while I am in the USA. I'll never drive my car there again.  It has a manual transmission. I really like that car.  :-(
Maybe I can convert it to an electric car. :-)

I am debating just renting a car at the Daytona airport when I arrive, and having that problem solved for the first week. I will need to do shopping and probably buy parts for the RV. So much, depends on so much. I hate that.

I am actually quite nervous about this trip. I have done all I can to arrange wheelchairs and baggage trolleys at the various airports. All the airports say that wheelchairs are available on a first come first serve basis. That could screw me over during the Atlanta connection. That is one reason I am flying all flights Delta.

I am only taking clothes, toys, my prosthetic leg, and a cane. No crutches or wheel chair. I need to see what will be necessary for living in the RV. I may buy crutches, or maybe a wheelchair once I am there. Unfortunately, the time I'll need them most, is the first few days in the RV. I fear my poor stump will want a few days rest after the flight.
 I also am worried about the prosthetic leg while walking on the Florida property. Walking on uneven ground is a real bitch, and that ground is all uneven. Clumps of grass growing in sand. Moving around on the property may be easier with crutches.
I am excited about getting to see the bears again. They roam all over the Florida Property. I wonder which is best for running away from bears, crutches, or a prosthetic leg.
Here is a picture of a bear and cubs taken from inside my RV during my last Florida visit..

And here is a picture of my RV and a Bear with cubs.

The ranch in Texas will be better for walking, if I stay on the roads. I'll still be paranoid, because I'll be slow. Being slow, AND being in the food chain is a bad combination.

 Inside the RV will be problematic. The passage is to narrow for crutches or a wheelchair. I have racked my brain to try to figure out how to get into the bathroom in the RV. I am so dependent on grab bars everywhere. The grab bars I have in this house would rip the walls apart in the RV.  Here in Pretoria, I also have a very strong bar going across the ceiling in the bathroom.

 Wheelchair ramps are only useful for wheel chairs. They are counterproductive with a prosthetic leg. I am very concerned about the steps up into the RV.

 I am so worried about a thousand things. But that is what will make "everything" I do exciting. Maybe not pleasant, :-) but definitely not boring.

 The life I had a few years ago, was designed and built by me. It was how I wanted my life to play out. That has changed. Fate, did not listen to my desires.

 I still want to live on the cheap. But I may have to throw money at any problems like hotel, car rental, buying  wheelchair, crutches, or even a different RV if necessary. Spending money for non-toys gives me hives. I am allergic to it.

 I may have to ask my friends for help in hooking the RV up. Electricity, water, and sewage. So much depends on the health of my stump. I hate being totally dependent on something that is so variable and nebulous. I can not wrap my mind around hooking up the RV sewage pipes, while in a wheel chair, on sand while in Florida, or on rocky ground while in Texas.
 A sore on the stump may mean a month without a prosthesis. Only a wheelchair or crutches. Of course, if I would lower my life expectations, and be happy with just reading a book, and looking out a window, then it wouldn't matter as much.

 I need to visit my Brother in Washington..
 I would like to drive the RV to Texas, but I'll fly to visit Washington.
I think I'll spend a few months in Florida, with good friends, then drive the RV to Texas, and spend a few more months with good friends.
If I need help driving, I'll ask someone to drive with me. Something simple like a sore stump, and bad phantom pain would mean drugs and not driving till it gets better.
I could get stuck in someplace like NOLA indefinitely. (This is a good lead in, for a talk on suicide.) :-)

Another patient I knew from my chemo days has died. He had colon cancer. He was healthy on a three month check up, then dead before the next three month check up.
 I also am sort of stuck in South Africa because of my Medical Aid. I am so sad that I don't see me living in America. :-( I should be with bears, and coyotes. I understand them better than people.

I just noticed how almost every paragraph of this blog, starts with the word "I". That should tell you what the blog is all about. :-)
The word "I" is used 84 times. Please don't tell my Buddhist teacher.

 I have now expressed some of my fears and worries. (85)

Since being diagnosed with Angiosarcoma, and having my leg amputated, I have kept myself securely encased in my small world. A world of easy wheel chair movement, lots of grab bars, and everything in easy reach. Now I will experience real life. On it's terms, not mine. (87)
I feel like this is where all the "theory" of daily prosthetics use, gets real. (88)

Day 116 - Nineth Chemo, wound care lady

 08:00
 We are up early, and just had a super healthy breakfast. Fried tomato, fried egg, steamed fish and steamed broccoli.
It is a beautiful morning. It is almost like there is no angiosarcoma in the world.
 But the reality is, I am going for chemo in a few hours. So the chemo gods will take the next few days of my life.

I am hoping the wound care lady will teach wrapping today.
When I crutch a lot, my heartbeat goes up, and the stump hangs. It then fills with blood, because there is no vein action in the muscles to pump the blood out of the stump. The swelling seems to be a major cause of phantom pain.
I think maybe the swelling puts pressure on the nerves that have been cut short, and used to go to the foot and lower leg.

The politicians in South Africa are now talking about how the white man is more likely to pay for medical aid for his pet, than for his maid or gardener. They interviewed 4000 middle class families, and found that to be very true.
The most common response from the bread winner of the house hold was that pets are part of the family, and domestic workers are temporary employees.

Oh oh...Maddie wants me to "mush".
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16:00
Just back from chemo, and wound lady, and lunch at the dance studio.
Maddie is busy sorting suit cases to take to George.

Chemo was normal. We both chatted to other people. It is interesting to hear other cancer stories from people. We then chatted to the oncologist.  A very nice Indian lady. She explained the need for a longer chemo treatment. They are pleased with the way chemo reduced the tumors in the leg, and they want to hammer the ones that may have escaped into my body.

We then went to the wound care lady. She was very happy with the stump wound. She spent a long time cleaning it up and removing LOTS of dead skin and scabs. She said that I should never remove a scab. They must all fall off on their own.

 

 

Note: I am NOT holding a pumpkin (or a football)

Another Note: It has been as severely abused as any body part can be, so it is NOT smiling. I know it looks like it is smiling, but it is NOT.

The doctor came by and also looked. He said it looks good, and to no longer bandage it, just let it open to the air. He also said to shower with it open, and wash gentle with soapy water. 

The Wound Care Lady said that when I see her next on Dec 15th, we should be able to pass me off to the prosthesis guys for coning to start. 

The Doctor said that the coning should be done by early January, and I should be on a prosthesis before I am off chemo the end of February. That would be great. :-)

Then when I finish with chemo, and am on a prosthesis, Maddie and I will have to start serious planning for a trip stateside.

On the way home, I showed Maddie a cute little cafe I found. It is almost half way to the big mall, so I used to walk past it many times, and would often stop in for coffee. It is a dance studio. We sat, ate lunch, and watched the people learn to dance. One lady student today seemed to have two left feet. 

But I guess I shouldn't say any thing, because I have NO left feet.

Once again we are up way to late.

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