16:45
I have had a bad few days with PLP ( Phantom Limb Pain). No sleep. Last night I took two tramacet pain killers, 2 Robaxin 750 muscle relaxers, one tripiline 25 tricyclic anti depression, a celebrex anti inflamatory, a lyrica 75 for nuropathic pain, and a domacot sleeping pill at 20:00. I was still wide awake in pain at 2:30. Couldn't read, play Sudoku, or surf.
Today the oncologist upped my lyrica to 150mg twice a day, and the tripiline to 50mg. and prescribed a B6/iron tablet for the low hemogoblin.
She also prescribed me Cymgen (Cymbalta 60mg). These make people gain weight fast, but Cymbalta seems to work for fibromyalgia, which is also a neuropathic pain.
Also she prescribed Tegretol. It is used for epilepsy
Tegretol (carbamazepine) is an anticonvulsant. It works by decreasing nerve impulses that cause seizures and pain.
If those don't work, then I will go see a psychiatrist.
Yesterday I went to see my physio lady and the prosthesis guy, Bradley.
She was impressed with my walking,and made me do weird walking exercises. They are hard to do and take lots of thinking.
She says I should always start walking with a step from the prosthetic leg first. That way I can be 100% sure it is in front and locked before walking. That is a good idea. Also in the kitchen where it is easy to reach for something with my good leg, which puts weight on the prosthetic toes and unlocks it. This means that when I reach for something and rock forward onto my good leg, I also unlock the prosthesis leg, so when I rock back, it is unlocked. Crash, boom, bang.
Always reach with the prosthesis leg leading.
Bradley says my stump is in that bad stage, when it won't fit in the socket in the morning, and hits the bottom by evening. A large variance in size as the day progresses.
He recommends that I wear the leg as long everyday as possible to shrink the stump to a steady size as soon as possible.
This morning I got up ready to put on the leg and wear it all day long util bedtime. But found my stump very tender, inside near the end. As if the end of the cut femur is poking into the muscle they wrapped around the end of it . I put on the liner, but it hurt pretty bad. I then realized that if I grip the stump anywhere, and pull the skin back toward my hip, I get pain. But it is like inside pain. There is nothing wrong with the skin anywhere.
So I took off the liner. and used only crutches to chemo and the shopping after. But by myself on crutches I have no free hands to shop with.
I miss the leg.
So I crutched out of Woolies and away from all the health food, and crutched to the pizza place. They do free delivery within 20 kilometers. I had it delivered to my car outside in the parking lot.
I am now sleepy, but the PLP is bad. I had it in the pizza place, and at chemo. Even driving I could feel the foot.
--
Wednesday, 27 January 2016
Monday, 25 January 2016
Jan 23-24-25 - More Phantom Pain
Jan 23 23:15
Last night was a drug night. Lots of phantom pain. But an excess of drugs seems to be the only thing that works. I need an "unconscious"pill. When the phantom pain comes, I don't want consciousness. If I can't stop the pain, I want to stop thought.
I don't seem to have phantom pain when I am walking or when I am busy. It comes when I am relaxed, or bored. Wearing the prosthetic leg for long periods seems to make it worse later on. Also when I walk lots, and get tired, it seems to be worse a few hours later. I remember before the prosthesis, when I would crutch lots, I would have phantom pain later that evening. Maybe I need to take tomorrow off, and let the stump just rest the whole day and see if the pain is less in the evening.
One thing I forgot to mention the other day about employment disability, is chronic pain. The use of narcotics and strong pain killers to stop pain is as bad for an employer as the physical inability of an employee to do a job related task. So even if the physical amputation does not result is being "officially" disabled, the use of drugs for phantom pain can make you "officially" disabled.
--
My friend and I went to the big mall today. They have expanded the mall with about 20 new stores in a new section. We ate and chatted at a restaurant that I used to enjoy. Now it is very big. I think I will spend lots of money there.
My friend was explaining about a network security misconfiguration he has been dealing with. I listened, and understood all that he said, but I could not put it all together to understand why it was bad. He explained it many times in different ways. My intelligence was just to low. I almost started crying. It was so sad.
I figured that I would be able to do all the computer network related things I used to do. After all, cancer, and a leg amputation doesn't stop computer use. But the phantom pain does. With the drugs I take to be able to sleep, my mind is too fuzzy to be of any use when real thinking is required.
--
I have been reading lots about Doctors trying to use prosthetics to relieve phantom pain. One good article said:
Phantom Limb Pain (PLP) causes important disabilities to many of those living with it. It has been shown that PLP has a negative impact on people's social participation and health-related quality of life.
Moreover, some studies suggest that pain could be associated with difficulties with the prosthesis and could be a reason for prosthesis abandonment. However, the association between prosthesis use and PLP remains unclear because negative, positive, or no association has been found between these two variables in different studies.
On guy said the following, which sounds very much like me:
"PLP does not change, except that when I wear my prosthesis and I work on machinery, on tractors, I think about what I'm doing and less about it [PLP]. When I sit, in the evening, it is more painful. When I'm not active, it is more painful. So it has to be drowned in something, in work." [Patient 9–43 years of experience]
The article also said:
One Professional reported that the prosthesis allows patients to engage in significant activities that often direct their attention away from their PLP. She also suggested that the prosthesis may have a normalizing effect by allowing patients to use their amputated limb which could contribute to decreasing PLP. However, three health professionals also said that the prosthesis can increase PLP when it is poorly adjusted, when it stimulates a trigger point, or when it is too heavy. Moreover, one of them reported, as did the patients, that after wearing the prosthesis for many hours, PLP seems to increase.
One good thing this article taught me was to write PLP instead of writing out phantom pain. :-)
--
Sunday 24 Jan 11:00
I just got out of bed. I had a good 12 hour drug induced sleep.
Cancer, then loosing a leg, then phantom pain, now loosing my intelligence.
There are many battles in this war of life. Sometimes I am not sure which battle I am currently fighting.
Today I am not using the prosthetic leg. Wearing it seems to make the phantom pain worse, which means more drugs, which means more stupid.
I have a choice: Interact with the physical world, or interact with the mental world. Choose one. :-(
--
Monday 25 Jan 00:20
Lots of PLP. I spent the whole day laying in bed, or sitting in the wheel chair. No crutching, and no prosthetic leg. Tonight at 20:00 I only took a celebrex. No lyrica. I then took a 25 mg Tripiline. Hoping that I would be able to sleep without strong stupid making pills.
But by 23:00 I was in pain. I don't want to read, or play Sudoku, or play computer. It just hurts. My left toes are cramping bad. I took a muscle relaxer.
at 00:10 I took 2 Tramacet pain pills.
As usual when there is pain now, you want to take more drugs because the pain is worst, and you want relief NOW. I think the smart thing is to take lots of pills, but take them plenty early, so the PLP never gets a head start. But ...It hurts NOW!
I don't know why they don't make an "unconscious" pill. That would work great for chronic pain.
It is 01:40 and I guess I'll just publish this.
--
Last night was a drug night. Lots of phantom pain. But an excess of drugs seems to be the only thing that works. I need an "unconscious"pill. When the phantom pain comes, I don't want consciousness. If I can't stop the pain, I want to stop thought.
I don't seem to have phantom pain when I am walking or when I am busy. It comes when I am relaxed, or bored. Wearing the prosthetic leg for long periods seems to make it worse later on. Also when I walk lots, and get tired, it seems to be worse a few hours later. I remember before the prosthesis, when I would crutch lots, I would have phantom pain later that evening. Maybe I need to take tomorrow off, and let the stump just rest the whole day and see if the pain is less in the evening.
One thing I forgot to mention the other day about employment disability, is chronic pain. The use of narcotics and strong pain killers to stop pain is as bad for an employer as the physical inability of an employee to do a job related task. So even if the physical amputation does not result is being "officially" disabled, the use of drugs for phantom pain can make you "officially" disabled.
--
My friend and I went to the big mall today. They have expanded the mall with about 20 new stores in a new section. We ate and chatted at a restaurant that I used to enjoy. Now it is very big. I think I will spend lots of money there.
My friend was explaining about a network security misconfiguration he has been dealing with. I listened, and understood all that he said, but I could not put it all together to understand why it was bad. He explained it many times in different ways. My intelligence was just to low. I almost started crying. It was so sad.
I figured that I would be able to do all the computer network related things I used to do. After all, cancer, and a leg amputation doesn't stop computer use. But the phantom pain does. With the drugs I take to be able to sleep, my mind is too fuzzy to be of any use when real thinking is required.
--
I have been reading lots about Doctors trying to use prosthetics to relieve phantom pain. One good article said:
Phantom Limb Pain (PLP) causes important disabilities to many of those living with it. It has been shown that PLP has a negative impact on people's social participation and health-related quality of life.
Moreover, some studies suggest that pain could be associated with difficulties with the prosthesis and could be a reason for prosthesis abandonment. However, the association between prosthesis use and PLP remains unclear because negative, positive, or no association has been found between these two variables in different studies.
On guy said the following, which sounds very much like me:
"PLP does not change, except that when I wear my prosthesis and I work on machinery, on tractors, I think about what I'm doing and less about it [PLP]. When I sit, in the evening, it is more painful. When I'm not active, it is more painful. So it has to be drowned in something, in work." [Patient 9–43 years of experience]
The article also said:
One Professional reported that the prosthesis allows patients to engage in significant activities that often direct their attention away from their PLP. She also suggested that the prosthesis may have a normalizing effect by allowing patients to use their amputated limb which could contribute to decreasing PLP. However, three health professionals also said that the prosthesis can increase PLP when it is poorly adjusted, when it stimulates a trigger point, or when it is too heavy. Moreover, one of them reported, as did the patients, that after wearing the prosthesis for many hours, PLP seems to increase.
One good thing this article taught me was to write PLP instead of writing out phantom pain. :-)
--
Sunday 24 Jan 11:00
I just got out of bed. I had a good 12 hour drug induced sleep.
Cancer, then loosing a leg, then phantom pain, now loosing my intelligence.
There are many battles in this war of life. Sometimes I am not sure which battle I am currently fighting.
Today I am not using the prosthetic leg. Wearing it seems to make the phantom pain worse, which means more drugs, which means more stupid.
I have a choice: Interact with the physical world, or interact with the mental world. Choose one. :-(
--
Monday 25 Jan 00:20
Lots of PLP. I spent the whole day laying in bed, or sitting in the wheel chair. No crutching, and no prosthetic leg. Tonight at 20:00 I only took a celebrex. No lyrica. I then took a 25 mg Tripiline. Hoping that I would be able to sleep without strong stupid making pills.
But by 23:00 I was in pain. I don't want to read, or play Sudoku, or play computer. It just hurts. My left toes are cramping bad. I took a muscle relaxer.
at 00:10 I took 2 Tramacet pain pills.
As usual when there is pain now, you want to take more drugs because the pain is worst, and you want relief NOW. I think the smart thing is to take lots of pills, but take them plenty early, so the PLP never gets a head start. But ...It hurts NOW!
I don't know why they don't make an "unconscious" pill. That would work great for chronic pain.
It is 01:40 and I guess I'll just publish this.
--
Friday, 22 January 2016
Jan 22 -
15:00
I also just got back from the mall. The mall has many slopes and stairs. Not cripple friendly.
I hate slopes. Both slopes going up, and down. They are evil in their own way.
Stairs are safer for me than slopes. I have a physio appointment next Tuesday. I want her to help me with slopes.
By law, any "handicap friendly" slope can not be more than 4.8 degrees steep. One foot rise for 12 feet distance.
4.8 degrees feels very steep to me. Whether I am in a wheelchair, or using a prosthetic leg. Unfortunately the 1 in 12 is also the normal. That is the most economical for builders, so they tend to make all slopes 1 in 12.
To understand why slopes are bad for a prosthetic leg, you need to understand how a prosthetic leg works like a normal leg.
Here is a normal gait while walking.
I also just got back from the mall. The mall has many slopes and stairs. Not cripple friendly.
I hate slopes. Both slopes going up, and down. They are evil in their own way.
Stairs are safer for me than slopes. I have a physio appointment next Tuesday. I want her to help me with slopes.
By law, any "handicap friendly" slope can not be more than 4.8 degrees steep. One foot rise for 12 feet distance.
4.8 degrees feels very steep to me. Whether I am in a wheelchair, or using a prosthetic leg. Unfortunately the 1 in 12 is also the normal. That is the most economical for builders, so they tend to make all slopes 1 in 12.
To understand why slopes are bad for a prosthetic leg, you need to understand how a prosthetic leg works like a normal leg.
Here is a normal gait while walking.
My prosthetic knee is called a Mauch SnS. Mauch is pronounced "Mawk". The SnS stands for Stance and Swing. I can vary both the stance resistance and the swing resistance.
When the weight is on the heel, (the beginning of the "Stance" phase), the knee is a tiny bit over center, and won't collapse. This is called "extension". At the beginning of a step, when the heel strikes the ground in front of me, my knee is theoretically locked at full extension.
As I move forward, I must use my buttocks muscles to keep back pressure on the knee to make sure it stays extended and locked as I put more weight on it.
As I move forward, the weight gradually shifts to the toe. Weight on the toe pushes the knee farther back into hyper extension. The Mauch knee is designed with a tiny pendulum inside that detects when the leg is pushed into hyper extension. This pendulum unlocks the knee and allows it to flop about loose. The knee isn't 100% floppy. There is a resistance setting for the resistance of the bending of the knee, as I move forward. This is called "flexion" resistance. To little resistance and the knee will try to kick me in the ass. To much resistance and the knee won't bend far enough to use its weight to swing all the way forward when it is time for that. We are now at maximum flexion and enter the "Swing" phase.
Now the leg is free to swing forward. The resistance that I set for extension determines the resistance to the knee flopping forward. If this resistance is too little, the leg will snap forward with force. Like a kick. It makes me look like a Nazi goose stepper.
To much resistance and the leg won't swing far enough, and it won't be locked in full extension when I put weight on it when the heel hits. This is a guaranteed fall.
To me the swing forward is the most dangerous period of a gait. It the foot swinging forward touches the ground or is blocked, it will stop, and when I move my weight onto what I hope is a locked knee, there is no leg in front of me, and I will fall hard. This is called a "stumble".
If everything goes right, and I have the extension resistance set right, the leg swings forward into extension just as the heel hits the ground. End of swing phase.
Now lets see what happens on a down slope.
The heel strikes and locks the knee. But because of the down slope, the toe never touches the ground as I move forward, and the knee never goes into hyper extension, and never unlocks into swing mode. This means that as I am trying to swing the knee forward, it is still locked in full extension. The leg stays stiff, and I must swing it off to the side in an arc to get it around in front of me so I can put weight on it.
So on a down slope the leg will never get into swing mode.
On an up slope, the toe hits early, and the knee unlocks into swing mode while I am still putting weight on it, thinking I am still in the stance mode. Halfway into a step, the knee unlocks and I will fall if I am not expecting it.
This also will happen if there is an uneven floor. The toe may be on a rock or a raised tile. it will unlock early while I have weight on it, and am still thinking it is locked.
The opposite is also true. If the floor is uneven, and there is a depression where the toe should hit, then the knee will not go into hyper extension, and unlock. I will be trying to swing the leg forward, but it will still be locked straight.
One good feature of the Mauch Knee is that I can set it to stay in a mode.
I can make it stay in extension mode, so it will never bend. This is very secure and safe mode. I use it when I am standing for a long period of time, like doing dishes.
I can also make it stay in swing mode. This is useful for cycling.
There are many prosthetic knees on the market. They all are different, and do things in different ways. One I will get to test soon is the Total Knee 2000. It has a device that jams the knee whenever there is weight on the heel. Weight onto the toe releases the jam and allows the leg to swing. It is harder to use, but many athletes run with it.
The one feature it has that sets it apart, is that the mechanical linkages make the leg shorter on swing forward. This drastically reduces the chance of a stumble.
--
18:00
I just got all padded up, and walked up and down the street in front of my house. .5km. I get very tired.
--
Thursday, 21 January 2016
Jan 21 - Nominal day after chemo.
09:45
Chemo was normal. Lots of people. At one time there were 9 people on drips. The lounge only sits 6. They had to bring in extra chairs. I arrived at 10:30 and left at 15:30. I used crutches and the prosthesis.
Last night I took all my mixture of pills that make me sleep best. Nothing. So I took the same mixture again. Still very bad, constant phantom pain. Sleep was impossible. This pain produced moaning. I was shocked to hear myself moaning. I didn't know where the sound came from at first.
I read a bit, and started a new book. The last book in the series. :-(
I watched a very good documentary of the Marikana Massacre. The suppression of the workers by government is now worse than during the apartheid era. Black on black violence is worse that the white on black violence ever was. It seems as if the whole Marikana events lead to the execution by the government forces of the strike leaders.
Was still awake at 03:00, but dozed off till 5:30, then slept for a few hours. I am very tired, exhausted, and sleepy. I will make a big breakfast then sleep more.
--
Chemo was normal. Lots of people. At one time there were 9 people on drips. The lounge only sits 6. They had to bring in extra chairs. I arrived at 10:30 and left at 15:30. I used crutches and the prosthesis.
Last night I took all my mixture of pills that make me sleep best. Nothing. So I took the same mixture again. Still very bad, constant phantom pain. Sleep was impossible. This pain produced moaning. I was shocked to hear myself moaning. I didn't know where the sound came from at first.
I read a bit, and started a new book. The last book in the series. :-(
I watched a very good documentary of the Marikana Massacre. The suppression of the workers by government is now worse than during the apartheid era. Black on black violence is worse that the white on black violence ever was. It seems as if the whole Marikana events lead to the execution by the government forces of the strike leaders.
Was still awake at 03:00, but dozed off till 5:30, then slept for a few hours. I am very tired, exhausted, and sleepy. I will make a big breakfast then sleep more.
--
12:30
Trying to figure out the disability laws is very hard using the internet. The laws are constantly changing with law suits and new legislation. A legal document may be a year old, but still comes up on a search. It could be invalid because of a change in the laws in the last year. How can I know if a law has been superseded in the last few months?
California is weird. A single amputation below the knee is not a disability, but a mastectomy is. Apparently a tit is an "appendage", and total removal of an appendage is a disability.
California also considers a double amputation below the knee to be less of a disability than a single amputation above the knee.
US Social Security says:
You will generally qualify for Social Security Disability benefits if you meet one of the following conditions:
- Loss of both hands
- Have lost either lower limb above the ankle (tarsal region) AND have complications that medically prevent you from using a prosthetic device to help you walk and effectively ambulate.
- Loss of one hand and one lower limb above the ankle with inability to use a prosthetic device.
- Loss of an entire leg at the hip or pelvic region.
As the prosthesis technology improves, so does a disability not become a handicap. There have been many major improvements in prosthesis since the war in Iraq and Afghanistan has produced so many amputations. The problem is that since the government is paying, the price on the latest prosthesis is stupid expensive. If someone really cares about helping amputees, and not about the balance sheet, then a perfectly good hydraulic only knee could be built. It would be better, AND sell for about 1/4 of a new bionic knee.
The big selling point of course is "stumble recovery". Computerized knees can do that. Pure mechanical or hydraulic knees currently do not.
A hydraulic knee could be built that pumped a tiny bit of fluid during the swing forward phase, and if the pumping stopped before full extension then the leg would lock allowing force to be put on the bent leg, preventing a fall. This is not rocket science. It is below the technological level that the fluidic computers in the Cobra helicopter used in the mid 1960's.
--
15:00
I just walked to the back yard, and did 10 large figure 8s. Then I walked to the street and retrieved our garbage bin and took it to the back yard. All without a crutch.
I just thought of something that embarrasses me, that I never thought of before. I have a set of complete body armor from my motorcycle days. Gloves, elbow guards, knee guards, helmet, even a complete kevlar body armor suit if I feel like it :-)
I think realistically gloves, elbow guards, and knee guards will be enough to allow me unlimited walking on the street, and have adequate protection in a fall.
--
16:30
I just walked .55 kms. Lots of body protection but no crutches, and no falls. Very tiring. I am exhausted and breathing hard. I'm all sweaty.
I feel so much safer with the gloves and elbow/knee guards on. It still takes a lot of concentration.
I almost had a stumble, but that was trying to get out of the way of a speeding car.
I live on a dead end road that is open during rush hour to relieve the traffic on the main road. When the gate is open and the cars can come through, they are always going fast on the way to work, or on the way home from work. The rest of the time the gates are closed, and then all traffic has to go through security booms on another road.
But a few times a day somebody that is used to the gates being open is trying to take a short cut in the hours the gate is closed. They come zooming down the street at about 4 times the legal speed limit, then slam on brakes when they see the gates are closed, then they turn around and go back even faster.
I only walk when the gates are closed. Many times kids learn to ride their bikes and skateboards in front of my house, because there is no through traffic with the closed gates.
I fear someday a rich, bitch, yuppy in a big Mercedes will take out some kids in front of my house.
--
Supper was fish and chips. I drove to the shops and bought supper and came home. No crutches.
Maybe I will figure this leg out.
--
Tuesday, 19 January 2016
Jan 19 - Blood day and a visit to the prosthesis place.
18:00
I sit here feeling stupid.
The oncologist gave me new pills that help with the phantom pain. They also make me sleep lots, and I feel dumb all day. They also produce "Lackadaisicalness". I just couldn't be bothered with stuff like blogs, TV, computers, and books.
I have been taking the pills for 4 nights now. I sleep for about 12 hours a day, and am dozy for another 6 hours.
Today was a busy day. I did blood tests, because tomorrow is chemo day. :-(
Then I went to the prosthesis guy, Bradley. There were many things that needed to be done. And I like that place.
My stump is loosing mass very fast because of all the wrapping, and liner, and socket. My socket is now loose, and a week ago it was hard to get my leg even into the socket. Also my leg seems to want to be in the socket at a different angle than last week.
Bradley was ready to build a new socket, but decided that maybe a thin piece of leather in the inside of the socket would give enough added volume to allow another week with the socket.
While I sat on a bed, and waited for my socket to be redone, a very fit looking guy came in to the same room as I, and asked if they could use this room for a consultation. I said sure. This guy works for Bradley and sells shoes in their running shoe store. They specialize in "Natural Running". It is a return to running for long periods without injury. The shoes are different, and very expensive. They have less padding, and most of the natural runners hit the ground first with the center of the foot, not the heel. This guy was having calf muscle problems. Because he works for the same company, the whole staff knew him. He brought with 8 pairs of shoes he wears. Each shoe has a special purpose, and helps with certain injuries. They have a large pad that records the pressures of the foot. He had to run back and forth many times with each pair of shoes.
I sit here feeling stupid.
The oncologist gave me new pills that help with the phantom pain. They also make me sleep lots, and I feel dumb all day. They also produce "Lackadaisicalness". I just couldn't be bothered with stuff like blogs, TV, computers, and books.
I have been taking the pills for 4 nights now. I sleep for about 12 hours a day, and am dozy for another 6 hours.
Today was a busy day. I did blood tests, because tomorrow is chemo day. :-(
Then I went to the prosthesis guy, Bradley. There were many things that needed to be done. And I like that place.
My stump is loosing mass very fast because of all the wrapping, and liner, and socket. My socket is now loose, and a week ago it was hard to get my leg even into the socket. Also my leg seems to want to be in the socket at a different angle than last week.
Bradley was ready to build a new socket, but decided that maybe a thin piece of leather in the inside of the socket would give enough added volume to allow another week with the socket.
 |
| The left leg is getting skinnier daily. |
We looked at all the computer analysis of each shoe, and how it affects his foot strike in different ways.
Running was never this high tech with me. I just bought shoes and ran them till the soles came off.
They finally decided to have him wear a certain pair, and do a certain exercise to strengthen a certain muscle in the calf, without strengthening other muscles in the calf.
Then they are back with my socket. The white leather looks good. it was cut and glued inside the socket.
Now my stump fits tight. Bradley cut the silicone liner a bit as it was rolling up at my groin and pulling out my pubic hair. With the chemo I don't have enough pubic hairs spare to have some pulled out.
Bradley's assistant is a very nice Serbian lady that actually builds the sockets. She asked me what color I wanted the out side of my final socket when she builds it, as she can make it any color. I told her I wanted a Texas flag. She made some drawings. After I got home, I made a demo model from a Texas flag I have.
Bradley then did his normal adjustments, as I walk back and forth.
When I got home, the real problem began because I don't have a shopping trolley to move stuff around the house with. So I made 4 trips from the car to the front door.
Then they are back with my socket. The white leather looks good. it was cut and glued inside the socket.
Now my stump fits tight. Bradley cut the silicone liner a bit as it was rolling up at my groin and pulling out my pubic hair. With the chemo I don't have enough pubic hairs spare to have some pulled out.
Bradley's assistant is a very nice Serbian lady that actually builds the sockets. She asked me what color I wanted the out side of my final socket when she builds it, as she can make it any color. I told her I wanted a Texas flag. She made some drawings. After I got home, I made a demo model from a Texas flag I have.
 |
| This is what I am thinking about. |
Bradley said that next week would be with a physio lady, as I have reached his knowledge of how to walk best. He said I need to get rid of the crutches more, and walk natural more, BUT DON'T FALL. He also said that walking in large figure 8's would be good.
I left Bradley's and headed for home. Then I started thinking about a small park near my house. I bet I could walk there, and if I fell it would be onto the grass. I drove to the park, and it was empty. I found an area with relatively short grass. I set my crutches down about 10 meters apart, and started walking figure eights around the crutches. I did this till I got bored, and I never fell.
Then I decided to drive home. I need to do shopping, but need someone to go with me. I was feeling all competent with the leg, so decided to try shopping. I tried last week to hang on to the trolley and walk behind it, and I failed. I tried again. This time I concentrated on just walking, and only used the shopping trolley for balance. I put the crutches in the trolley. It actually went pretty well. The chance of someone bumping me while I am behind a trolley is minimal. So I walked along behind my guard/shield trolley and bought stuff. I told the cashier lady to put everything back into the trolley, and took it straight to the car, loaded the car, and paid a car guard to take the trolley back.
 |
| Selfie of me shopping. |
When I got home, the real problem began because I don't have a shopping trolley to move stuff around the house with. So I made 4 trips from the car to the front door.
It was good to take off the leg after 10 hours. It always feels good to take off the leg, because if it doesn't bother you, you will leave it on. Only when it bothers you, do you take it off. Then it always feels good. :-)
--
Wednesday, 13 January 2016
Jan 13 -
12:30
I am sitting in the prosthesis office while they adjust my socket. They are moving my socket to knee alignment about 5 mm. That will make it more steady while standing, but also more difficult to initiate the swing forward while walking. So we will increase the hole for the hydraulics during swing forward, and at the same time raise the front of the foot. This should make the toe less likely to catch during the swing forward phase.
--
--
Whew! What a busy day.
I had very bad phantom pain last night, and was awake til 02:00. I took a lot of drugs last night, and they seemed to have not helped at all.
I was up at 7:30 and put on my leg. I had hoped for a nap during the day.
My friend came over about 08:00 and we chatted a bit.
I did my blood test, and will get the results tomorrow before going to chemo.
I then went to the prosthesis guys, for a 13:00 appointment with the physio.
When I arrived, Bradley came over and said he wanted to see some things first. He had me walk crutch-less, and turn around, and walk around a table. He then called the physio lady and told her not to come. He said I am about equivalent of week 6 or 7 of the training.
He said there is a week 2 patient that still doesn't know how to put on the prosthesis. He has a note book of the procedures to follow.
He said he had another week 3 patient that had not figured out how to force the knee to bend using the stump.
Bradley and I sat in an office, and he asked me if I had any questions or comments. He smiled when I whipped out my list. :-)
1.I told him I never REALLY know where the prosthesis foot is without looking.
2.I told him I had fallen about 10 times, but always caught myself with the crutches.
3.I complained that there is no "stumble recovery” in the Mauch Knee that he sold me.
4.I have small blisters all over the stump.
5. In the morning the stump is too big for the socket, and by evening it is too small.
6.The leg slowly collapses while standing if I don't keep back pressure on the socket.
He then said it was his turn:
1.With much practice you will learn to feel if the prosthetic is extended by the weight on the stump, and the snap of the leg going forward and stopping.
2.With any prosthesis, you will fall. With any set of ice skates, you will fall. Learning a skateboard, you will fall.
3.He agreed. There is no stumble recovery in the Mauch knee, and it is one of the main bad points of the knee. But thousands of people switch to the Mauch knee every year knowing this. There are some very good points about the Mauch knee.
4. Small blisters are not friction or burn blisters, but the squeezing of the stump is forcing liquid out of the stump. If the lymphatic system can't get the water out fast enough, it is forced out through the skin. Ignore them unless they start to hurt.
5. The varying stump size is what we will live with until we get a steady stump size, and can build a permanent socket. Until then we will have these temporary sockets, and varying stump sizes.
6.He will move the line of alignment to make it more steady in stance phase. He said that later when I will be stronger, I will want it moved back to where it is now.
He then took my prosthetic away, and I sat and waited. He then came by and asked if I wanted to watch the programming of a bionic knee. Duh, of course I do.
The guy was a double amputee, both above the knee with short stumps. He was trading in his Medi knees.
http://mediusa.com/portfolio-item/oh5sfkh5/
I got to play with these knees. The are cool, but fail a lot - not very good manufacture or service. They are like a combination of the Mauch knee and the Total knee. Very good idea, just poorly done :-(
He was getting The Rheo 3 knees.
http://www.ossur.co.za/rheoknee
The Rheo are bionic knees, not mechanical. They brag about the computers updating all solutions 200 times a second.
The torque clutches are very similar to autopilot servos. A magnetic gel that changes viscosity with applied electricity.
This guy got up and walked. He liked the fact that the Rheo had a bleed down for sitting. My Mauch knee does that also. It gives about a 75pound (35kg) force to lower you into a chair.
The Rheo knee has an AI (artificial intelligence program that learns each persons way of doing things, and it gets better and better.
He is getting 2 knees, at R930,000 each. My house is worth 1.2 million.
I don't think I'll be getting one of those soon.
Bradly brought back my leg, and he did many adjustments. I walked back and forth. He videoed my walking. He says I need to work on making my prosthesis leg take larger steps.
The moving of the alignment now means I don't need to use muscles to stand, and prevent the leg from collapsing. It feels much better when standing. He made the swing forward time quicker so the end of the swing is more pronounced, and noticable.
He trimmed some off the socket where it was rubbing.
He said he plans on swapping my knees to the total knee 2000, medi knee, and the 3R60. He has all of these in stock.
http://www.ottobock.com.tr/en/prosthetics/lower-limb/solution-overview/knee-joint-3r60-ebs/
He said it will take a few weeks before I will know enough to tell what I like best. He said they can make a plan if I like one of those other 3 knees. They are all more expensive than my Mauch knee.
Before I left I told him about my fear of falling.We discussed it a lot. We talked about wearing skateboarding protection. But the best solution was when he showed me how to kneel.
A "stumble" is when the leg coming forward is delayed or stopped, like hitting a curb or brick. Some prosthesis have stumble recovery. If the leg sees that it is in forward swing phase, and the leg stops before full forward extension, the knee locks up solid. Now, even though it is bent, it can support my full weight. The Mauch knee will stay in swing mode (no hydraulics at all) until the knee is at full extension. No support at all in a stumble.
We practiced a stumble a few times. If I am VERY quick, as soon as I detect a stumble, and totally collapse my good leg, then the prosthetic leg also collapses, but into a kneeling position, not a total collapse. This means that I will now fall from a kneeling position instead of a standing position. Much lower to the ground. Also any forward motion has been addressed. He says it may break the mounting to the socket, but that can be fixed a lot easier than a broken arm. I am not sure I could react quick enough. The times I have tripped, I didn't even know what happened till after the fact.
I have taken lots of pills, and a sleeping pill.
Later
--
Tuesday, 12 January 2016
Jan 12 - Video of walking
12:00
I was up at 07:30 after a nice drug induced sleep.
My stump still has many small water blisters on it. Google says it is because the water is being squeezed out of the stump faster than the drainage system can handle, so it goes out the skin. All the internet experts :-) say to totally ignore small blisters. So I do.
The stump was quite swollen this morning, and it took almost 3 hours before the stump was far enough into the socket to allow me to walk a bit.
I just went to the gate and back. Coming back was crutch-less, except for using them as a fall catcher.
I find that if I concentrate, I can walk crutch-less.
Or:
https://youtu.be/0KeVa2c1h-M
But this is still in the realm of a party trick. I shouldn't carry babies around for a while yet.
A study which surveyed a population of 396 lower limb amputees reported that 64% of trans-femoral amputee respondents experienced a fall in the previous month period.
--
13:30
The itching from the blisters is hard to ignore, so I took the leg off, and rolled down the liner so I could get to the blisters, and let the stump breath air.
Reading on the internet about actual people that have worn the Mauch Knee for awhile and they all seem to say the same thing. Like these...
-----I have been a Mauch user for 4yrs, prior to this I had demo on Ultra Knee, Ottobok 3R80 and Total 2000. The Mauch is a free swinging stance-phase unit so there is no weight-activated lock. Alignment is easy but crucial and I would guess only pros who know the unit well will be able to get the alignment right. The unit is good, a compitent amputee would be able to walk very well at variable speed and learn to jog, ride a bike etc - maybe, I say maybe because all that would require extensive training and much, much confidence. the biggest down sides to these 'none locking' hydraulic units is mainly two fold, firstly they require good strenght to be usable, and will 'deck' you often.
my advice...if you are strong, confident and wish to be a high-active amputee then the Mauch is a good bet - but you will fall regular untill you master it.
-----Hi, I had six month trial on a Mauch 18 months ago, I tried to make the knee work for me. I'm very active, work as a surveyor on and off building sites and such. The Mauch is very fast action but very very unpredictable. I fell in the road once in front of a car, which led me to call the Mauch a day. I since use a high spec total knee which is much safer. The Mauch is the faster leg on the market if you have the stump power to control it. Definitely not for the faint hearted, good luck with your choice :D
--
I just went to the shops. Leg and crutches.
--
21:30
Tomorrow is blood test and prosthesis lesson.
--
I was up at 07:30 after a nice drug induced sleep.
My stump still has many small water blisters on it. Google says it is because the water is being squeezed out of the stump faster than the drainage system can handle, so it goes out the skin. All the internet experts :-) say to totally ignore small blisters. So I do.
The stump was quite swollen this morning, and it took almost 3 hours before the stump was far enough into the socket to allow me to walk a bit.
I just went to the gate and back. Coming back was crutch-less, except for using them as a fall catcher.
I find that if I concentrate, I can walk crutch-less.
Or:
https://youtu.be/0KeVa2c1h-M
But this is still in the realm of a party trick. I shouldn't carry babies around for a while yet.
A study which surveyed a population of 396 lower limb amputees reported that 64% of trans-femoral amputee respondents experienced a fall in the previous month period.
--
13:30
The itching from the blisters is hard to ignore, so I took the leg off, and rolled down the liner so I could get to the blisters, and let the stump breath air.
Reading on the internet about actual people that have worn the Mauch Knee for awhile and they all seem to say the same thing. Like these...
-----I have been a Mauch user for 4yrs, prior to this I had demo on Ultra Knee, Ottobok 3R80 and Total 2000. The Mauch is a free swinging stance-phase unit so there is no weight-activated lock. Alignment is easy but crucial and I would guess only pros who know the unit well will be able to get the alignment right. The unit is good, a compitent amputee would be able to walk very well at variable speed and learn to jog, ride a bike etc - maybe, I say maybe because all that would require extensive training and much, much confidence. the biggest down sides to these 'none locking' hydraulic units is mainly two fold, firstly they require good strenght to be usable, and will 'deck' you often.
my advice...if you are strong, confident and wish to be a high-active amputee then the Mauch is a good bet - but you will fall regular untill you master it.
-----Hi, I had six month trial on a Mauch 18 months ago, I tried to make the knee work for me. I'm very active, work as a surveyor on and off building sites and such. The Mauch is very fast action but very very unpredictable. I fell in the road once in front of a car, which led me to call the Mauch a day. I since use a high spec total knee which is much safer. The Mauch is the faster leg on the market if you have the stump power to control it. Definitely not for the faint hearted, good luck with your choice :D
--
I just went to the shops. Leg and crutches.
--
21:30
Tomorrow is blood test and prosthesis lesson.
--
Monday, 11 January 2016
Jan 11 - Still learning to walk.
02:40
What a lot of phantom pain! Very strong and nonstop.
When I showered last night,and I washed the stump, I noticed many small blisters along where the stitches used to be, and around the stump about half way up. They didn't hurt.
Taking the liner off was a relief. I could feel the blood rushing into the stump. The stump was in the socket about 11 hours, but it never felt uncomfortable or painful. I had a little trouble getting to sleep, but nothing really notable.
At about 1:45 I awoke and the pain was substantial. I got a mirror, but other than the small blisters, there was nothing to see. The stump looks fine.
It took a moment for me to realize that the pain was not actually on the stump, but a few inches below the stump. It felt like real pain. It was like I had been cut.
Now I am wild awake. Tomorrow the weather for all of South Africa is supposed to be rain. We need it, so it will be welcome. It may mean I can't walk on my street though.
Our poor currency is in trouble. The Rand is sick.
A one ounce gold coin was worth R8200 in Feb last year, today it is worth R18,200. More than half the value.
People always equate wealth with a currency. My house here cost R100,000 in 1993, and today is worth R1,200,000. BUT ...It almost worth the same amout of Krugerrands today as it did in 1993.
People just miss the whole concept of money versus wealth.
One week ago the Rand was 15.4 to the Dollar, and now is 16.2.
That is a 6% loss in value in a week.
The Rand to Dollar was 11.5 exactly a year ago today. That is a 30%
decrease in value in one year to the Dollar.
I will always remember a story from the Koran about Mohammed buying a chicken for one silver Durham about 1500 years ago. Today in Saudi Arabia a chicken costs one silver Durham. Things of value like chickens or silver or gold seem to have the same value for hundreds or thousands of years it is only currencies that are based on nothing (Like the US Dollar and the Rand) that change in value.
Why am I talking about Gold at 03:00?
--
Up at 8:00 after getting back to bed after 5.
I put my leg on easily, and even got it pointed in the right direction.
--
18:00
I had a lazy day. I was playing Artificial intelligence in my train game, and walking with the leg in between. I also did laundry.
I walked 3 times to the gate. It is about 100 meters there. So I walked about 600 meters for the day. The best was the last 100 meters. I did that without any crutch touching the ground. Just the 2 feet. I rock and roll, and swivel, and hunch, but I can do it.
Laundry was easy once I figured out to put the wash basket in the wheelchair, and wheel the laundry out to the line. With legs it is almost easy to hang up the laundry. It got even easier when I locked the leg straight. Hard to walk, but very secure.
My neighbor came by and offered to drive the beetle around the block a few times. That was nice of her.
I just took the leg off. It was on for 10 hours. It was starting to itch, so I also removed the silicone liner and gave everything a good washing, then put the liner back on.
I am dozing off
__
Sunday, 10 January 2016
Jan 10 - Triping on a trip
9:00
There is so much to write about, that this is becoming a daily blog again. I'm sure that won't last for long.
I woke up at 8 after a good night sleep. (drug assisted).
I decided to make the day a leg only day. No Wheelchair.
The leg went on in record time. It is getting easier every time. There is still the problem of it not going in far enough, but it will settle as the day goes on, and the leg will get shorter.
Last night my Texas buddy and I were chatting about how the brain never really knows where the prosthetic leg is. Like when you get out of a chair and find your leg is numb and asleep. There is no feeling, and no feedback of what it is doing. So you sit down and massage it till the feeling comes back. I live with that "no feeling" every day.
All the modern prosthesis, whether mechanical like mine, or computerized bionic ones, all leave the human brain out of the loop. I never KNOW positively what is happening. I simply eventually build up trust that the leg will be, where it should be. The position of the leg is always a probability. We strive for 100%, but it never will be.
I used to walk about 10,000 steps a day. If the leg is 99.99% always in the correct position, that still means I will fall once every day. That falling will probably be at the worst time, when something important distracts me. (Like a coming train, or an attacking dog)
A fall a day means, an injury a day.
I found online about some guys that are working on this exact problem. They are trying to incorporate some means of telling the brain what is happening.
http://www.amazon.com/Neuro-Robotics-Interfaces-Rehabilitation-Augmentation-Performance-ebook/dp/B00S16PTL0
They are wanting the prosthesis to be a robot controlled by the human brain.
One thing I found interesting in the excerpt from this book, was that they used many force sensors to measure everything on a prosthetic leg. One thing they measured was the force applied by the human muscle to push the stump downward when rising from sitting.
They found that more force was applied when using a power servo assisted knee than with a non assisted knee. The more assistance in getting up, the more force from the human. Exactly backwards from the way you would think.
--
11:30
Whew. I just walked to the big gate down the street like I did when learning the crutches. Only a few hundred meters, but it is a start. I can walk much faster than I can crutch. When going fast, I can feel the leg snap straight better. I was keeping the good leg, and prosthesis leg length of stride the same. This knee does that kind of walking well.
As usual I used the two crutches, but the left one never touches the ground. It is for fall stopping only.
The knee doesn't do busy standing well. While cooking my breakfast it collapsed twice, but I stand with the leg almost against the cabinet, so the knee hits the cabinet, and stops, and that also warns me.
I need a warning buzzer when the leg is not locked, and weight is on the heel. The only time this condition exists, is when sitting down, or falling down.
--
13:00
I decided to play with the adjustment on the leg. I want to make it have more resistance when collapsing to give me more time to catch myself. I call it stumble recovery. The official manual calls it "Stance phase resistance to knee flexion when the prosthesis is loaded." I guess that would be "sprtkfwtpil" for short.
The sprtkfwtpil adjustment is a tiny Allen screw that is hidden, and hard to reach. Not like the swing phase adjustment that are big easy knobs.
I get a mirror, and have to bend way over to reach, and see the back of the knee. I struggle to get the Allen head wrench in the sprtkfwtpil hole while upside down using a mirror. The mirror makes the upside down, upside up but backwards, so everything is upside up, except my head. Now...I have to turn the screw which way?
I take my leg off, and put it on my lap.
I find that the screw is all the way at maximum resistance already. I wish it could go much farther.
Oh well...That was a total waste of a half an hour.
I put the leg back on, but it is a bit skew, so when I stand I look like a duck (well half a duck).
I take it off and try again. Now I am pigeon toed.
I try again, and third time I am lucky.
I wasn't quite as skewed as this guy.
--
17:00
I have walked to the gate twice more. That's 600 meters for the day. On the second trip I tripped. :-) But that crutch held just off the ground at the 10 O'clock position saved me. It hit the ground hard at exactly the right angle. My legs were way back behind me. I don't know what happened. I think I didn't push on the toe with enough force, and it thought I was still in stance mode, and starting to sit, so the hydraulics were tight to lower me into a chair slowly, and what I wanted was zero hydraulics to swing the leg forward.
A simple thing like that means a bad fall. Without that crutch, I probably would have been hurt bad. There is nothing to break your fall except the one hand. That is why there are so many broken wrists from leg prosthesis.
Usually when a two legged person trips, a knee is first to hit the ground. But with a prosthetic, the good leg is behind you with the bad leg. Both feet are together behind you as you fall. Similar to being tackled in football or rugby.
That old man at the pharmacy had it right. If I make a 3 page list of the important things to do when walking on a prosthesis. Top of the list is "DON'T FALL". Now got to page three and you will see the things that Bradley talks about.
"Keep the strides the same between prosthetic and the good leg" That is on page 3.
"Keep your hips forward so the hip flexors can be used to put pressure on the toe." That is on page 3.
Everything listed on page one and page two is "DON'T FALL!"
That old man, when he got to work, he locked the knee straight. On a R230,000 bionic knee, and his first and only thought was "DON'T FALL!".
Maybe a young athletic person can handle a fall, and the injury that goes with it. But for an old man with cancer, an injury can last for the rest of their life.
--
There is so much to write about, that this is becoming a daily blog again. I'm sure that won't last for long.
I woke up at 8 after a good night sleep. (drug assisted).
I decided to make the day a leg only day. No Wheelchair.
The leg went on in record time. It is getting easier every time. There is still the problem of it not going in far enough, but it will settle as the day goes on, and the leg will get shorter.
Last night my Texas buddy and I were chatting about how the brain never really knows where the prosthetic leg is. Like when you get out of a chair and find your leg is numb and asleep. There is no feeling, and no feedback of what it is doing. So you sit down and massage it till the feeling comes back. I live with that "no feeling" every day.
All the modern prosthesis, whether mechanical like mine, or computerized bionic ones, all leave the human brain out of the loop. I never KNOW positively what is happening. I simply eventually build up trust that the leg will be, where it should be. The position of the leg is always a probability. We strive for 100%, but it never will be.
I used to walk about 10,000 steps a day. If the leg is 99.99% always in the correct position, that still means I will fall once every day. That falling will probably be at the worst time, when something important distracts me. (Like a coming train, or an attacking dog)
A fall a day means, an injury a day.
I found online about some guys that are working on this exact problem. They are trying to incorporate some means of telling the brain what is happening.
http://www.amazon.com/Neuro-Robotics-Interfaces-Rehabilitation-Augmentation-Performance-ebook/dp/B00S16PTL0
They are wanting the prosthesis to be a robot controlled by the human brain.
One thing I found interesting in the excerpt from this book, was that they used many force sensors to measure everything on a prosthetic leg. One thing they measured was the force applied by the human muscle to push the stump downward when rising from sitting.
They found that more force was applied when using a power servo assisted knee than with a non assisted knee. The more assistance in getting up, the more force from the human. Exactly backwards from the way you would think.
--
11:30
Whew. I just walked to the big gate down the street like I did when learning the crutches. Only a few hundred meters, but it is a start. I can walk much faster than I can crutch. When going fast, I can feel the leg snap straight better. I was keeping the good leg, and prosthesis leg length of stride the same. This knee does that kind of walking well.
As usual I used the two crutches, but the left one never touches the ground. It is for fall stopping only.
The knee doesn't do busy standing well. While cooking my breakfast it collapsed twice, but I stand with the leg almost against the cabinet, so the knee hits the cabinet, and stops, and that also warns me.
I need a warning buzzer when the leg is not locked, and weight is on the heel. The only time this condition exists, is when sitting down, or falling down.
--
13:00
I decided to play with the adjustment on the leg. I want to make it have more resistance when collapsing to give me more time to catch myself. I call it stumble recovery. The official manual calls it "Stance phase resistance to knee flexion when the prosthesis is loaded." I guess that would be "sprtkfwtpil" for short.
The sprtkfwtpil adjustment is a tiny Allen screw that is hidden, and hard to reach. Not like the swing phase adjustment that are big easy knobs.
I get a mirror, and have to bend way over to reach, and see the back of the knee. I struggle to get the Allen head wrench in the sprtkfwtpil hole while upside down using a mirror. The mirror makes the upside down, upside up but backwards, so everything is upside up, except my head. Now...I have to turn the screw which way?
I take my leg off, and put it on my lap.
I find that the screw is all the way at maximum resistance already. I wish it could go much farther.
Oh well...That was a total waste of a half an hour.
I put the leg back on, but it is a bit skew, so when I stand I look like a duck (well half a duck).
I take it off and try again. Now I am pigeon toed.
I try again, and third time I am lucky.
I wasn't quite as skewed as this guy.
--
17:00
I have walked to the gate twice more. That's 600 meters for the day. On the second trip I tripped. :-) But that crutch held just off the ground at the 10 O'clock position saved me. It hit the ground hard at exactly the right angle. My legs were way back behind me. I don't know what happened. I think I didn't push on the toe with enough force, and it thought I was still in stance mode, and starting to sit, so the hydraulics were tight to lower me into a chair slowly, and what I wanted was zero hydraulics to swing the leg forward.
A simple thing like that means a bad fall. Without that crutch, I probably would have been hurt bad. There is nothing to break your fall except the one hand. That is why there are so many broken wrists from leg prosthesis.
Usually when a two legged person trips, a knee is first to hit the ground. But with a prosthetic, the good leg is behind you with the bad leg. Both feet are together behind you as you fall. Similar to being tackled in football or rugby.
That old man at the pharmacy had it right. If I make a 3 page list of the important things to do when walking on a prosthesis. Top of the list is "DON'T FALL". Now got to page three and you will see the things that Bradley talks about.
"Keep the strides the same between prosthetic and the good leg" That is on page 3.
"Keep your hips forward so the hip flexors can be used to put pressure on the toe." That is on page 3.
Everything listed on page one and page two is "DON'T FALL!"
That old man, when he got to work, he locked the knee straight. On a R230,000 bionic knee, and his first and only thought was "DON'T FALL!".
Maybe a young athletic person can handle a fall, and the injury that goes with it. But for an old man with cancer, an injury can last for the rest of their life.
--
Saturday, 9 January 2016
Jan 9 - Learning to walk again.
07:00
I am starting this blog early because there have been a zillion things to write about, and I have been up about 20 minutes. I'll forget these things.
Bradley told me a few times, that the morning procedure is to wake up, put on the silicone liner, put on the leg, THEN get up and start the day. Don't brush your teeth first, Don't pee first. Don't lay there first. He was especially concerned about today because of the strain the stump took yesterday, it will be swollen, and not fit easily into the socket.
I wake up and lay there for a bit, after a great nights sleep, and I have to pee. I have been going to bed with out drinking lots of water. I know that is bad, but sometime it is so hard to get to sleep because of the phantom pain, that when I do get to sleep I want to stay sleeping for the maximum time. If I get up to pee, then I sometimes battle to get back to sleep. It is the maintenance of sleep that is a problem, as well as getting to sleep initially.
Then I realize, that the spray to lubricate the socket is in the other room. So I jump in the wheel chair and zoom to get the spray, lubricate the funny fold I have in the stump, put on the liner. (it is tighter than normal), then get in the wheel chair and fetch the leg, then head for the bathroom. All the grab bars in the bathroom make me feel comfortable. Then I lubricate the socket and slip it on, then stand up and bounce the stump into the socket. Well....Most of the way into the socket. I bounce and bounce. I press the vacuum release button and hear the whoosh, and feel the change in the stump. I figure that stump size will be greater if it is in a vacuum, so I release the vacuum, bounce, release the vacuum, bounce. Still not in all the way.
I reach down and remove the vacuum release button. I can now stick my finger in the hole, and feel how far the stump is into the socket. Still a few inches (5 cm) from where it was yesterday.
Poor Bradley goes and gets the new leg within millimeters of the correct length, and here I am within a few inches of the correct length because I can't get the stump into the socket, so the leg is about 5 cm to long. Duh!.
My main problem when walking with the new leg is when it swings forward. It swing forward in secret. I can feel nothing, yet the leg must be forward and the heel planted securely and the knee held back before it can take weight. If I think it is forward, and it isn't, then when I transfer weight to it, it isn't there,and I will fall. If it is forward, but the heel isn't down first, then it isn't locked even if it is forward, and I will fall. Now with the leg being 2 inches longer than it should be, the chances of it swinging all the way forward are very slim. It seems it always drags on the floor, and only the toe is on the ground which is the signal to the leg to collapse and swing forward, but it is behind me, and I don't know this.
It seems to be a percentage game...compute the probability of the leg collapsing and falling. 30% would be nice. I feel now there is a 50% chance the leg won't be locked when I put weight on it.
It needs something like a buzzer that buzzes when the leg is locked so I know it is ok to step forward. The only other way is to look. But looking requires being hunched over looking at the floor as I walk.
I still have to pee.
So I quickly sit in the wheel chair. but now the leg is dragging on the ground. Holding the leg off the ground requires one hand. One hand wheelchair operation is not easy. So I need to quickly find the left leg rest. I have not used the left foot rest since,... EVER. It is hiding behind the big chair. No way can I reach it. So I move the wheel chair to get a grabber while dragging the leg. I get a grabber, and get the leg rest, but it won't fit. All my adjustments to the wheel chair now make the foot rest unable to fit.
I still have to pee.
I grab the crutches and crutch/walk/stumble to the toilet, then proceeded to dribble all over my new foot.
Now I also remember Bradley saying. Always get the leg dressed for the day before putting it on. Opps..to late for that. Try to get a pair of shorts on a leg that you can't move, and the foot is permanent at 90 degrees, and it is "way" over there. I end up using 2 grabbers to get the shorts over the leg. But now how to balance while pulling the shorts up. I need some way to stand with both hands free to get dressed.
Then it dawns on me, Duh!....use the prosthetic leg as a leg, and just stand up. Duh! That works.
Yesterday I walked about 2 or 3 hundred meters total. Today if I make it to the bathroom without the leg collapsing, it is a major accomplishment. I do not trust this leg!
Now I want to sit at the computer. Back in the wheelchair, and drag the foot.
--
18:00 Much Later
I have had a busy day. I decided I needed the glycerin, and alcohol to make the spray, that lubricates the inside of the socket before I put it on.
I crutch/walk to the car and drive to the local pharmacy. It is busy, and I have to park about 100 meters from the pharmacy. Once inside I gather up the stuff I want, but alcohol is only available at the prescription counter. ??
I wait in the line and finally get to see a pharmacist. He is an old man, maybe 55ish. I tell him what I want, and he looks at me and says that he is also an amputee. He said it sounded like I was mixing the spray for the socket. This is cool. We chat for about 20 minutes, and then he says "let me carry this stuff to the checkout counter for you." We then stood together in the checkout line for another 10 minutes. I must have asked a thousand questions.
He lost his leg due to bone cancer in the year 2000. He is an above knee like me, but his stump is much shorter than mine. He uses an OttoBock C-Leg knee. It is a bionic knee, and has a small computer in it.
http://www.ottobockus.com/C-Leg.html
Here is a picture from their web site:
He says he needs a new knee, as he sent it for overhaul last year and they sent it back. They said a new one would be cheaper than fixing the old one. The C-Leg is supposed to last 3-5 years. He has worn that one 15 years. A new C-Leg is about R230,000. He says he will get the new ankle that talks to the knee. When the leg swings forward, the toe is brought up by the ankle. This greatly reduces the chance of catching the toe during the swing forward phase, and also make sure the heel is the first thing to touch the ground..
He says that he no longer uses the socket mixture I was going to make. He says that the glycerin slowly builds up a layer of gunge, and is very hard to clean out of the socket. He also said that so much of what the prosthesis guy teach is to try to make you look as inconspicuous as possible in daily life. He said "F**k that. All that matters, is not falling."
He said that me using 2 crutches and the prosthesis is a great idea, and I should do that as long as I feel insecure.
He has had many falls. He broke his wrist on one fall, and his jaw on another. Face first onto a curb. His worst fall was at a friend house. He had just finished in the bathroom and he caught his toe on a rug. As he fell he grabbed a towel rail. The rail snapped in half, and one of the halves sharp end went into his palm, and came out near the elbow.
He showed me how he walks. He first unlocked his leg. While at work, he locks the leg straight, and only unlocks it when he gets in the car to go home. He does almost everything Bradley says don't do. He takes small steps with the bad leg, and large ones with the good leg. Bradley says to never do that.
He kicks the prosthetic forward hard. He can then feel when the leg is snapped straight, then he brings it down hard on the heel. I tried walking like he does, and it sure does feel a lot more secure. I can feel when the leg is straight, and the heel is down. It looks like a Nazi goose step. Bradley would have a heart attack if he saw me do that.
I walked about 400 meters today. All with the crutches, and the prosthesis. The left crutch is the fall protector. Most falls are toward the 10 O'clock position. I keep the left crutch pointed that way. The other crutch I use as an aid like I had a sprained left ankle. By keeping weight off the bad leg, I reduce the speed of a collapse if it happens.
I have learned a lot about things I like, and things I don't, regarding walking with a prosthesis. So much more to learn tomorrow.
--
I am starting this blog early because there have been a zillion things to write about, and I have been up about 20 minutes. I'll forget these things.
Bradley told me a few times, that the morning procedure is to wake up, put on the silicone liner, put on the leg, THEN get up and start the day. Don't brush your teeth first, Don't pee first. Don't lay there first. He was especially concerned about today because of the strain the stump took yesterday, it will be swollen, and not fit easily into the socket.
I wake up and lay there for a bit, after a great nights sleep, and I have to pee. I have been going to bed with out drinking lots of water. I know that is bad, but sometime it is so hard to get to sleep because of the phantom pain, that when I do get to sleep I want to stay sleeping for the maximum time. If I get up to pee, then I sometimes battle to get back to sleep. It is the maintenance of sleep that is a problem, as well as getting to sleep initially.
Then I realize, that the spray to lubricate the socket is in the other room. So I jump in the wheel chair and zoom to get the spray, lubricate the funny fold I have in the stump, put on the liner. (it is tighter than normal), then get in the wheel chair and fetch the leg, then head for the bathroom. All the grab bars in the bathroom make me feel comfortable. Then I lubricate the socket and slip it on, then stand up and bounce the stump into the socket. Well....Most of the way into the socket. I bounce and bounce. I press the vacuum release button and hear the whoosh, and feel the change in the stump. I figure that stump size will be greater if it is in a vacuum, so I release the vacuum, bounce, release the vacuum, bounce. Still not in all the way.
I reach down and remove the vacuum release button. I can now stick my finger in the hole, and feel how far the stump is into the socket. Still a few inches (5 cm) from where it was yesterday.
Poor Bradley goes and gets the new leg within millimeters of the correct length, and here I am within a few inches of the correct length because I can't get the stump into the socket, so the leg is about 5 cm to long. Duh!.
My main problem when walking with the new leg is when it swings forward. It swing forward in secret. I can feel nothing, yet the leg must be forward and the heel planted securely and the knee held back before it can take weight. If I think it is forward, and it isn't, then when I transfer weight to it, it isn't there,and I will fall. If it is forward, but the heel isn't down first, then it isn't locked even if it is forward, and I will fall. Now with the leg being 2 inches longer than it should be, the chances of it swinging all the way forward are very slim. It seems it always drags on the floor, and only the toe is on the ground which is the signal to the leg to collapse and swing forward, but it is behind me, and I don't know this.
It seems to be a percentage game...compute the probability of the leg collapsing and falling. 30% would be nice. I feel now there is a 50% chance the leg won't be locked when I put weight on it.
It needs something like a buzzer that buzzes when the leg is locked so I know it is ok to step forward. The only other way is to look. But looking requires being hunched over looking at the floor as I walk.
I still have to pee.
So I quickly sit in the wheel chair. but now the leg is dragging on the ground. Holding the leg off the ground requires one hand. One hand wheelchair operation is not easy. So I need to quickly find the left leg rest. I have not used the left foot rest since,... EVER. It is hiding behind the big chair. No way can I reach it. So I move the wheel chair to get a grabber while dragging the leg. I get a grabber, and get the leg rest, but it won't fit. All my adjustments to the wheel chair now make the foot rest unable to fit.
I still have to pee.
I grab the crutches and crutch/walk/stumble to the toilet, then proceeded to dribble all over my new foot.
Now I also remember Bradley saying. Always get the leg dressed for the day before putting it on. Opps..to late for that. Try to get a pair of shorts on a leg that you can't move, and the foot is permanent at 90 degrees, and it is "way" over there. I end up using 2 grabbers to get the shorts over the leg. But now how to balance while pulling the shorts up. I need some way to stand with both hands free to get dressed.
Then it dawns on me, Duh!....use the prosthetic leg as a leg, and just stand up. Duh! That works.
Yesterday I walked about 2 or 3 hundred meters total. Today if I make it to the bathroom without the leg collapsing, it is a major accomplishment. I do not trust this leg!
Now I want to sit at the computer. Back in the wheelchair, and drag the foot.
--
18:00 Much Later
I have had a busy day. I decided I needed the glycerin, and alcohol to make the spray, that lubricates the inside of the socket before I put it on.
I crutch/walk to the car and drive to the local pharmacy. It is busy, and I have to park about 100 meters from the pharmacy. Once inside I gather up the stuff I want, but alcohol is only available at the prescription counter. ??
I wait in the line and finally get to see a pharmacist. He is an old man, maybe 55ish. I tell him what I want, and he looks at me and says that he is also an amputee. He said it sounded like I was mixing the spray for the socket. This is cool. We chat for about 20 minutes, and then he says "let me carry this stuff to the checkout counter for you." We then stood together in the checkout line for another 10 minutes. I must have asked a thousand questions.
He lost his leg due to bone cancer in the year 2000. He is an above knee like me, but his stump is much shorter than mine. He uses an OttoBock C-Leg knee. It is a bionic knee, and has a small computer in it.
http://www.ottobockus.com/C-Leg.html
Here is a picture from their web site:
 |
| How cool is that socket art. That's what I want. |
He says that he no longer uses the socket mixture I was going to make. He says that the glycerin slowly builds up a layer of gunge, and is very hard to clean out of the socket. He also said that so much of what the prosthesis guy teach is to try to make you look as inconspicuous as possible in daily life. He said "F**k that. All that matters, is not falling."
He said that me using 2 crutches and the prosthesis is a great idea, and I should do that as long as I feel insecure.
He has had many falls. He broke his wrist on one fall, and his jaw on another. Face first onto a curb. His worst fall was at a friend house. He had just finished in the bathroom and he caught his toe on a rug. As he fell he grabbed a towel rail. The rail snapped in half, and one of the halves sharp end went into his palm, and came out near the elbow.
He showed me how he walks. He first unlocked his leg. While at work, he locks the leg straight, and only unlocks it when he gets in the car to go home. He does almost everything Bradley says don't do. He takes small steps with the bad leg, and large ones with the good leg. Bradley says to never do that.
He kicks the prosthetic forward hard. He can then feel when the leg is snapped straight, then he brings it down hard on the heel. I tried walking like he does, and it sure does feel a lot more secure. I can feel when the leg is straight, and the heel is down. It looks like a Nazi goose step. Bradley would have a heart attack if he saw me do that.
I walked about 400 meters today. All with the crutches, and the prosthesis. The left crutch is the fall protector. Most falls are toward the 10 O'clock position. I keep the left crutch pointed that way. The other crutch I use as an aid like I had a sprained left ankle. By keeping weight off the bad leg, I reduce the speed of a collapse if it happens.
I have learned a lot about things I like, and things I don't, regarding walking with a prosthesis. So much more to learn tomorrow.
--
Friday, 8 January 2016
Jan 8 - Walking at last
08:00
I slept well, and am ready to get my prosthesis today :-)
First coffee and an egg.
The Prosthesis company just called to remind me to bring a left shoe to match the right shoe.
I slept in the silicone liner which is not normal, but we want the stump as shrunk as possible. He made everything assuming the stump will shrink more in the next few weeks.
I quickly removed the liner, and washed everything with water only, then put the liner back on.
--
18:30
A long, tiring, wonderful, day.
I arrived at the prosthetic place just before 10:00. We went into the training room. It has a set of parallel bars bolted to the floor, and quite a few roll around chairs.
There was Bradley, the prosthetic fundi, and his Serbian assistant, and through out the session different people that work there came in to watch. They say that working there is good because they change so many lives for the better. Lots of job satisfaction.
Bradley is amazing. If you ask any prosthetic related question, he doesn't just know the answer, he is actually an expert on that topic. Cool Dude. He has run 4 Comrades Marathons and I have run 2 so we have something in common.
First was to try on the socket. Bradley didn't like the strength of the plastic socket, so he wrapped a layer of fiberglass around it. He assembled the leg, and put on the foot, silicon fake foot cover, then a kevlar sock, then my shoe.
Shoes are important because the angle of the foot is quite important. A shoe with a higher heel will change the locking dynamics of the knee. Bradley said that after a week or so he will show me how to do the different adjustments for different shoes. Most prosthetic people just have one pair of shoes, so they don't have to adjust the knee so often.
He showed me how to put the socket on. It takes almost my full body weight to force the stump into the socket. He sprayed a lubricant inside the socket before trying it on. We rested the socket bottom on a box, so it was the right height, then I pushed down hard. He then tried to pull it of. No way would that socket budge on the stump. As the stump went into the socket, it pushed out all the air, forming a strong vacuum between the stump and the socket. My silicone liner has a movable ring that acts like a one way valve. It lets air out of the socket, but won't let any air in.
The only way to get the socket off the stump is to let air in. There is a small push button on the side of the socket to let air in. When you press that button the air whooshes in and the feeling inside the socket is funny. The whole stump shrinks in a second.
I had with me my small video camera (like a cheap GoPro). It usually lives in the front of my bicycle in the states. Now I set it up to show me when I walk. Most of the video is the back of Bradley's head :-) I took a total of 2 gigs of video. It is a good thing, because I have a record of everything Bradley talked about during the 3 hours of instruction.
Next Bradley attached the rest of the leg to the socket.
Now we worked on standing straight, and getting the pelvis level. He then took the leg and adjusted the pylon length, and other things, then brought back the leg, and we adjusted it again and again. Finally I could stand up straight.
My amputation operation was on 23 October. Now was 8 January. 77 days.
This knee has different modes. In the normal walking mode, the leg is never locked straight. I must use muscles to keep the leg from collapsing. When the weigh is on the heel AND the knee is all the way straight, it is a very tiny bit over center, and therefore "locked"..
Try this at home. Stand with your back to a wall, and your heels against the wall. Now push one heel back hard against the wall. Hold the pressure. I bet that is a muscle you seldom have used. That force is what keeps the leg from collapsing. I would find that a difficult action to NEVER forget. Like if I am standing and a pretty girl walks past, my concentration would wander, and the knee would collapse.
Now I worked on shifting weight between legs. Then I worked on the action to break the leg stance. If I have the knee hard in a straight "locked" position, and weight on the heel, it is actually very strong, and does not give. If I relax, or move the knee forward, then either the weight comes off the heel, or the leg gets over center and collapses. These are two separate actions, with two very different results.
With a straight leg, and weight on the heel, the leg is locked. If weight shifts off the heel onto the toe, ( like your good leg has just moved forward.) then the leg thinks you are walking and it swings back, then forward with little resistance. Hopefully the leg swings far enough forward to have the heel strike the ground and now if you pull back on the knee, the leg will lock. Just before you put weight on it. Lots to do in a short time.
Again...With a straight leg, and weight on the heel, the leg is locked. if the knee is pushed forward while weight is still on the heel, then the leg gives a slow collapse. Maybe 2 seconds. The knee thinks you are sitting down in a chair, and it lowers you into a sitting position. This is also handy if you stumble. It give a slow descent to the ground, and maybe even time to catch your self.
The different adjustments take some getting used to. He let me play around and some felt bad. I decided that A4 was the best setting. It turns out that he sets beginners at A3. I am set at A3.
I did a lot of back and forth on the parallel bars, then we walked out to the main lounge and up and down the halls We went into the one office to practice on carpet. When we were all done and leaving I did something wrong and fell. Riaan caught me. He said my heel caught the carpet and the toe came down and released the leg. Scary. I did not like having the knee collapse on me.
Bradley gave me some of the solution to put on the socket before putting it onto the stump. I'll buy some this weekend. Then we went out to the car and he showed me how to get in and out.
I then drove home. At home I walked a bit, but I was tired. There was little food in the house, so I went to the local shop.
I tried pushing a trolley around, but that was a disaster because my swing forward on the prosthesis kept hitting the trolley and not extending so I could get the heel down to lock the knee.
I asked for a cashier lady to help me. She was very nice. I was using crutches in case I fell. I was doing very good, then the lady asked which margarine I wanted, and I looked and the knee collapsed. I caught myself with my crutches. Scary.
Then we went to the yogurt area, and she asked me what yogurt I wanted. I was checking prices, and the knee collapsed.
Then we walked far over to the deli and I bought some pizza slices. The lady behind the counter asked me which ones I wanted. I looked, and the knee collapsed.
I have to stay concentrating on the forces required to keep the knee locked. A small distraction and the knee collapses.
So I think tomorrow will be a day of trying to get confidence in the knee.
To be honest, the whole prosthesis thing right now feels like a party trick. "Hey guys! Watch this." And I walk 10 meters.
But It seems impractical till the locking becomes second nature and instinctive.
--
I slept well, and am ready to get my prosthesis today :-)
First coffee and an egg.
The Prosthesis company just called to remind me to bring a left shoe to match the right shoe.
I slept in the silicone liner which is not normal, but we want the stump as shrunk as possible. He made everything assuming the stump will shrink more in the next few weeks.
I quickly removed the liner, and washed everything with water only, then put the liner back on.
--
18:30
A long, tiring, wonderful, day.
I arrived at the prosthetic place just before 10:00. We went into the training room. It has a set of parallel bars bolted to the floor, and quite a few roll around chairs.
There was Bradley, the prosthetic fundi, and his Serbian assistant, and through out the session different people that work there came in to watch. They say that working there is good because they change so many lives for the better. Lots of job satisfaction.
Bradley is amazing. If you ask any prosthetic related question, he doesn't just know the answer, he is actually an expert on that topic. Cool Dude. He has run 4 Comrades Marathons and I have run 2 so we have something in common.
First was to try on the socket. Bradley didn't like the strength of the plastic socket, so he wrapped a layer of fiberglass around it. He assembled the leg, and put on the foot, silicon fake foot cover, then a kevlar sock, then my shoe.
Shoes are important because the angle of the foot is quite important. A shoe with a higher heel will change the locking dynamics of the knee. Bradley said that after a week or so he will show me how to do the different adjustments for different shoes. Most prosthetic people just have one pair of shoes, so they don't have to adjust the knee so often.
He showed me how to put the socket on. It takes almost my full body weight to force the stump into the socket. He sprayed a lubricant inside the socket before trying it on. We rested the socket bottom on a box, so it was the right height, then I pushed down hard. He then tried to pull it of. No way would that socket budge on the stump. As the stump went into the socket, it pushed out all the air, forming a strong vacuum between the stump and the socket. My silicone liner has a movable ring that acts like a one way valve. It lets air out of the socket, but won't let any air in.
The only way to get the socket off the stump is to let air in. There is a small push button on the side of the socket to let air in. When you press that button the air whooshes in and the feeling inside the socket is funny. The whole stump shrinks in a second.
 |
| You can see the push button vacuum release. |
Next Bradley attached the rest of the leg to the socket.
Now we worked on standing straight, and getting the pelvis level. He then took the leg and adjusted the pylon length, and other things, then brought back the leg, and we adjusted it again and again. Finally I could stand up straight.
 |
| Standing on my own two feet. First time for 77 days. |
This knee has different modes. In the normal walking mode, the leg is never locked straight. I must use muscles to keep the leg from collapsing. When the weigh is on the heel AND the knee is all the way straight, it is a very tiny bit over center, and therefore "locked"..
Try this at home. Stand with your back to a wall, and your heels against the wall. Now push one heel back hard against the wall. Hold the pressure. I bet that is a muscle you seldom have used. That force is what keeps the leg from collapsing. I would find that a difficult action to NEVER forget. Like if I am standing and a pretty girl walks past, my concentration would wander, and the knee would collapse.
Now I worked on shifting weight between legs. Then I worked on the action to break the leg stance. If I have the knee hard in a straight "locked" position, and weight on the heel, it is actually very strong, and does not give. If I relax, or move the knee forward, then either the weight comes off the heel, or the leg gets over center and collapses. These are two separate actions, with two very different results.
With a straight leg, and weight on the heel, the leg is locked. If weight shifts off the heel onto the toe, ( like your good leg has just moved forward.) then the leg thinks you are walking and it swings back, then forward with little resistance. Hopefully the leg swings far enough forward to have the heel strike the ground and now if you pull back on the knee, the leg will lock. Just before you put weight on it. Lots to do in a short time.
Again...With a straight leg, and weight on the heel, the leg is locked. if the knee is pushed forward while weight is still on the heel, then the leg gives a slow collapse. Maybe 2 seconds. The knee thinks you are sitting down in a chair, and it lowers you into a sitting position. This is also handy if you stumble. It give a slow descent to the ground, and maybe even time to catch your self.
The different adjustments take some getting used to. He let me play around and some felt bad. I decided that A4 was the best setting. It turns out that he sets beginners at A3. I am set at A3.
I did a lot of back and forth on the parallel bars, then we walked out to the main lounge and up and down the halls We went into the one office to practice on carpet. When we were all done and leaving I did something wrong and fell. Riaan caught me. He said my heel caught the carpet and the toe came down and released the leg. Scary. I did not like having the knee collapse on me.
Bradley gave me some of the solution to put on the socket before putting it onto the stump. I'll buy some this weekend. Then we went out to the car and he showed me how to get in and out.
I then drove home. At home I walked a bit, but I was tired. There was little food in the house, so I went to the local shop.
I tried pushing a trolley around, but that was a disaster because my swing forward on the prosthesis kept hitting the trolley and not extending so I could get the heel down to lock the knee.
I asked for a cashier lady to help me. She was very nice. I was using crutches in case I fell. I was doing very good, then the lady asked which margarine I wanted, and I looked and the knee collapsed. I caught myself with my crutches. Scary.
Then we went to the yogurt area, and she asked me what yogurt I wanted. I was checking prices, and the knee collapsed.
Then we walked far over to the deli and I bought some pizza slices. The lady behind the counter asked me which ones I wanted. I looked, and the knee collapsed.
I have to stay concentrating on the forces required to keep the knee locked. A small distraction and the knee collapses.
So I think tomorrow will be a day of trying to get confidence in the knee.
To be honest, the whole prosthesis thing right now feels like a party trick. "Hey guys! Watch this." And I walk 10 meters.
But It seems impractical till the locking becomes second nature and instinctive.
--
Wednesday, 6 January 2016
Jan 6 - First Prosthesis Day :-)
Jan 5
08:00
I slept great from 22:30 til about 01:30. I have been awake since.
Today I go see the prosthesis guys. I am VERY fortunate that the factory for the prosthesis is 1 km from my house. I used to walk past it 5 times a week. There are no signs, and it is a factory, and not a retail store. Everybody is covered in fiberglass dust, and it FEELS like a factory. Full of skilled workers. I feel comfortable there.
I hope they approve of how I have been doing the coning.
--
13:00
I went to see Bradley the (prosthesis guy) at 10:00. At first his assistant saw me, then Bradley walked in. He said he was still on holiday, but the family was doing their separate things so he figured to go to work. He likes his job.
The one lady asked if this was my first appointment to have a prosthesis fitted, I said yes. She ran around getting plaster of Paris ready to mix.
Bradley asked me many questions about my chemo, then got a big form and started taking measurements. I had to take off my good shoe, and get my foot measured. The artificial foot needs to be the same size as the good foot so the same pair of shoes will fit both.
He then took the wrapping of my stump. He said I had wrapped it very well. He was then quite rough with it and treated it mean. Then he asked "Any pain?"
I said "no", and he was happy.
He measured the stump, then the good leg to see what the differences were. Then he asked about the times that I wrap it, and how often I washed it.
He said he had certain things that were prerequisite to prosthesis fitting. Like range of motion of the stump, (I passed with lots of extra motion) and strength of new muscles, He said they were very strong for a first fitting, but would be about 3 time as strong in 6 months.
Then he measured the stump in many ways, and said I needed a #38 silicon stocking, and sent the lady to find one. She came back with a 35,36, 39, and 40....No 38. Bradley got on the phone and arranged one to be delivered by 08:00 tomorrow morning. He told me to be there at 9:00.
Once the silicon stocking is fitted, it is worn 24/7. It is a very special stocking. It has a band around it that is like a one way valve, so when you put the leg socket on, all the air is squeezed out, and it can't get back in. So the prosthetic is stuck on the stump by vacuum. To release the vacuum so you can remove the leg, you open a valve to let air in. Ossur (the Icelandic manufacturer) has a new silicone liner with a movable ring. This allows a greater variance in the suction you require to keep the leg on. Mine will have a movable valve ring, so we will have to adjust it correctly.
 |
| This is the Normal Silicon liner with a fixed vacuum ring. |
 |
| This will be my liner with a movable vacuum ring. |
Then the plaster lady will make a mold of my stump. He says to bring a book. They will then remove the mold, and the lady will start making the fiberglass socket. The fiberglass socket will only be done on Friday afternoon.
Also tomorrow Bradley will start assembling the leg. Foot, shank, knee, and the socket attachment.
Initially for stability reasons, I will not have an ankle.
The knee will be a Ossur Mauch. This knee has many settings, and is quite complicated. Kind of like learning to drive a car the first time.
 |
| Notice the 2 dials on the hydraulic cylinder, and the U-shaped valve that lock the knee in fail safe mode. |
One setting it has is a fail safe mode. I will be in this mode for a few days. I asked Bradley which knee he would want if he needed one. He said the Total 2000 is the best walking knee made, but the Mauch knee does everything. It can do stairs, and bicycles, and long distance walking. He would choose the Mauch, then buy a Total 2000 for everyday use.
Bradley says he is sure that if all goes well my training on Friday, I will go home with the prosthesis on. If things don't go so well, then I will only wear it home on Saturday.
I will probably use crutches for the first week or two until the stump gets stronger. I will only put between 25% and 30% of my weight on the prosthesis.
I just got an e-mail saying that R77,000 of the prosthesis invoice was rejected by medical aid, and must be paid by the client. (me) They will only pay R41,000 of the R118,000 invoice. Grrrr.
-------------------------------------------------------
Jan 6 07:00
I wanted a good night sleep because of the important day today, so I pilled up last night, and slept well.
--
11:00
There is so much they told me today. I fear I'll forget most. I am so excited about the prosthesis, that I sometimes forget about the elephant in the room.
Bradley started out by apologizing for the intimacy of the next hour. He
said they will spend time at the very top of the thigh, in the inside
and outside. He had asked me to wear a swimming suit so it would be easy
to reach the top of the thigh..
He again measured the stump. He said he is sure that in a week or two, the
new socket will not work anymore. He says there will still be major
shrinkage from the silicone compression sock.
He showed me the silicone sock. He says they cost about R20,000. It has
a movable vacuum seal ring. Most socks have fixed rings. These end up
always forming a tight ring in the same place, and the ring sometimes
wears out before the sock. I will only have to replace the ring after 6
months. The sock should last a year. He says some people get 2 years out
of them, and some are totally wore out in 6 months. He says in 5 years time,
all socks sold will have movable rings. It is both cheaper and better.
One slight problem is that if my stump shrinks too much, the liner will
need to be replace with a smaller size.
He then put on the sock. Then took it off and I put it on. It is not
hard to do, but there are some things that make it better and easier.
Already I can feel the upper edge sliding and causing friction. He said
that may happen, especially if it is warm out, and today will be in the
high 30C's. (98F). The solution is to apply a tiny bit of aqueous gel
around the lip. TINY is the word.
It can't get much hotter than an 1/8th inch of silicon rubber all over
the stump. He says when I take it off tonight to shower, I will pour
sweat out. The lady suggested I remove it in the shower, then only wash
the liner after I get out of the shower. The liner needs to be washed
daily with a special solution. He showed the cheap version that is
available at a pharmacy. It is called Sanex Zero. No fragrance, no
colorants, and no ethanols. A very mild body wash. This is used every
night to clean the inside of the liner. I'll do that when I shower. A
shower is pretty much mandatory every day.
He then spent some time explaining what we will do today.
With the silicone liner in place, they will make a plaster cast of the
stump. It will be very important that I do two things.
One: keep my pelvis level.
Two: Relax the muscles in the stump.
Keeping the pelvis level is very hard. Try something...Stand normal and
notice how the pelvis is level. Now pick up one leg keeping the pelvis
level. Almost impossible. So I will have a strong grip on a bar attached
to the floor, and force the pelvis level using force on the bar.
Relaxing all the muscles in the stump is hard. When ever I feel
imbalanced, even by a tiny bit, it is instinctive to correct. This has
been with the hamstring and quadriceps for 64 years. Now to just relax
those muscles. The socket will use these muscles to help stabilize the
socket to the stump.
So as I stood gripping the bar and keeping the pelvis level, and
relaxing all muscles in the stump, they proceeded to slop plaster of
Paris all over. They have to work quick, and therefore it was a bit
sloppy. They moved the stump in a funny position behind the other leg,
and let it all dry. They then removed the mold, and proceeded to draw
lots inside of the mold. These were special places of interest. Once the dry
mold was safe out of the room, we began clean up. What a mess. My brand
new silicon liner was now covered in white plaster of Paris residue
It had been clean and new for about 10 minutes.
My swim suit was also covered with white, as well as my good leg and
shoe. We wiped me down, and cleaned up as best as possible. They took
off the new liner and the lady took it away to clean it. She came back
and I put it back on again.
The silicone liner is very hot, and tight. It does mean I don't have to wrap the leg every 6 hours.
Bradley says he will start on the fiberglass socket after lunch, and it
should be ready 10:00 on Friday. He said that I should plan on a 5 hour fitting and adjustment session on Friday. Then on the following Wednesday a 3 hour session with a physio training me to walk.
I have a blood test on that day because chemo is the next day :-(
He then brought out all the part to make up the leg. We looked at the
knee, foot and all the connecting parts. It was good to see all this
stuff in boxes with my name on it. This is finally happening.
The foot looks so cool, but it is carbon fiber, so is extremely strong, but needs protecting. A rubber sock protects it. The sock looks like a real foot. This isn't for cosmetic reasons as much to protect the foot, and allow a shoe to be worn.
 |
| This is my actual foot. |
 |
| This is the foot protector. |
He said he will assemble the leg with me watching because I will enjoy
that. He showed me how the alignment works, and all the adjustment.
Wow.. what a lot of ways to adjust the alignment of the knee, foot, and
pylon.
I then drove to buy the Sanex Zero, and back home.
The liner is hot and tight.
I asked the accountant lady at the factory about the letter from the medical aid saying I have to pay R77,000 to them from my pocket.
She thought a bit then she gave a big smile. She had taken a chance, and submitted the invoice for R118,000 to the medical aid on 30 Dec 2015.
They only paid R41,000 and the client must pay the rest.
But she had planned on submitting the invoice in the New Year when she knew the funds would be available. She took a chance and submitted it during last year. Since they paid R41,000 out of last years account, that means we have R41,000 more available for this years account. :-)
Oh... did I mention that the liner is hot and tight?
--
I have started doing mini loads of laundry. 3 t-shirts and 2 underwear. These I can hang up in the shower. I have one of those expanding clothes racks near the ceiling in my shower. Using the big grab bar across the shower, I feel safe hanging up the laundry.
--
Sunday, 3 January 2016
Jan 3 - A bad few days, and a few bad jokes.
It is 03:48 on the morning of 3 Jan 2016.
The last few days have been rough on me. But Happy New Year to you anyway, (if you use the Gregorian calendar).
I wonder what percentage of the world does.
When I was in Addis Ababa, at the airport they had the Gregorian, Islamic, and the Coptic (Julian?) calendars on the wall. If you get confused with time zones, you better stay away from the different calendars.
The last few days have been rough on me. But Happy New Year to you anyway, (if you use the Gregorian calendar).
I wonder what percentage of the world does.
When I was in Addis Ababa, at the airport they had the Gregorian, Islamic, and the Coptic (Julian?) calendars on the wall. If you get confused with time zones, you better stay away from the different calendars.
I think the chemo gave me diarrhea again. Today was the second day without even opening the front door. I really need to feel the sun. I also need to take out the trash, as it stinks bad. It is hard to be philosophical when the trash stinks.
I get so tired talking about my various illnesses. I sometimes just want
to keep it to myself.
The short version....New Years Day. I puked 5 times between 03:30 and 09:00. I spilled the puke bowl on the carpet. I had diarrhea bad. I messed 2 underwear so I put on a diaper, then of course nothing happened. I took 3 showers in that time. I was so hot and sweaty I laid under the ceiling fan on high. Then at about 05:00 I got cold. Tracksuit and duvet till 09:00.
When I puked, it was chicken breast and veggies. They looked like they had
just gone in. I ate them around 20:00, and at 03:00 they still were in the stomach, and looked perfect.
No digestion at all. I don't know?
to keep it to myself.
The short version....New Years Day. I puked 5 times between 03:30 and 09:00. I spilled the puke bowl on the carpet. I had diarrhea bad. I messed 2 underwear so I put on a diaper, then of course nothing happened. I took 3 showers in that time. I was so hot and sweaty I laid under the ceiling fan on high. Then at about 05:00 I got cold. Tracksuit and duvet till 09:00.
When I puked, it was chicken breast and veggies. They looked like they had
just gone in. I ate them around 20:00, and at 03:00 they still were in the stomach, and looked perfect.
No digestion at all. I don't know?
Yesterday was a man diaper day. I call it a man diaper, like a purse can be called a man bag. But a man bag it still just a purse, and what I wear, is still just a diaper.
I should have put it on sooner. Why on earth would I delay putting on a diaper? Like I'm afraid someone will see me? I might get embarrassed? It must be an Alpha male sort of thing. "I won't let some silly diarrhea tell ME what to do!"
I have been eating toast with anchovies paste for two days. I need some real food.
But most of all I need a good nights sleep. I have slept so much the last few days, that I fear tonight will be a sleepless night.
The night isn't over yet, so maybe I'll drift off. But I doubt it. Too much phantom pain.
--
I'm up at 09:30. Just took a shower. I thought I stank, but it is the trash.
House has no eggs, no milk, and no bread.
I got the most wonderful video from my friends in Texas. That did my soul a heap of good.
My whole thinking towards blacks has changed in the last few months. Most are so caring toward any old or disabled people. Just the opposite of whites. White people suck. I now always ask a black for help, and I talk to each one. After chemo, I asked a black guy to help me with the parking ticket computer because it didn't want to take my money, and I was balanced on crutches. All the white people in the line behind me were just impatient, none offered to help me. He was so kind and helpful. When done, in Setswana I said " I have seen what you have done for me." (That is how they say "thank you"). He looked at me and said back in Setswana " Thank you my grandfather. You have seen me as a man. I have seen what you have done for me."
It was like I was the first person that day that treated this parking
attendant as a man, and not as a nothing.
Blacks seem more "people" oriented, where whites are more "things" oriented. The black people in South Africa did not have even a wheel before the white man came. Their culture is different, and it is changing at a much faster rate than the white culture is changing. Blacks are moving from spears to cyber warfare in just 120 years. Whites are only moving from guns to cyber warfare in that time.
The problem is when blacks try to act like whites, with politics, and running large corporations. That just doesn't work.
The Saudis have the right idea. If you want something done, hire someone to do that job.
The blacks seem to think more along the lines of "If a white man can do it, then I can also do it." If the black man would accept and "use" the white man to do, what white men do best, like the Saudis do, then South Africa would be a much better place.
Hmmm...I just used 3 "do"s in one sentence.
I am chewing on a big chunk of Venison biltong. My hemoglobin count was low last blood test. I need to eat lots of liver, I am sorry, that is just not going to happen. Biltong will have to do.
Last night I got the brilliant idea of doing laundry in very small batches, and hanging it in the shower. I installed one of those expandable laundry racks in the top of my shower. With my fancy overhead bar in the shower, I could easily hang laundry up there.
At chemo I asked the oncologist why my good leg was now swollen up like my bad leg was before they chopped it off. She answered, "Oh, that could be the Paclitaxel, or maybe it is the Tramacet, or maybe because you sit all day in a wheelchair, or maybe it is the other chemo drugs we are giving you, then again it may be the Robaxin, and of course you don't walk like you used to, I don't think it is the angiosarcoma.."
I think a blatant "I DON"T KNOW." would have been sufficient. That seem to be the angiosarcoma motto "I DON'T KNOW!".
The thing that makes me most despondent is that the treatment they do for cancer just doesn't work. Like they are saying. "We are going to give you drugs to make you very sick, and they will wreck your whole life. You will still soon die of cancer, but at least we are doing "something", even if what we are doing doesn't work."
Maybe they should try leeches.
It is like building a car that you know will kill people, but you don't know any other way to build a car, so you just keep building it over and over. After all, it still makes you money.
I need to figure out how to take out the trash.
--
Cancer Jokes:
At chemo I asked the oncologist why my good leg was now swollen up like my bad leg was before they chopped it off. She answered, "Oh, that could be the Paclitaxel, or maybe it is the Tramacet, or maybe because you sit all day in a wheelchair, or maybe it is the other chemo drugs we are giving you, then again it may be the Robaxin, and of course you don't walk like you used to, I don't think it is the angiosarcoma.."
I think a blatant "I DON"T KNOW." would have been sufficient. That seem to be the angiosarcoma motto "I DON'T KNOW!".
The thing that makes me most despondent is that the treatment they do for cancer just doesn't work. Like they are saying. "We are going to give you drugs to make you very sick, and they will wreck your whole life. You will still soon die of cancer, but at least we are doing "something", even if what we are doing doesn't work."
Maybe they should try leeches.
It is like building a car that you know will kill people, but you don't know any other way to build a car, so you just keep building it over and over. After all, it still makes you money.
I need to figure out how to take out the trash.
--
Cancer Jokes:
A woman visits her doctor complaining of a strange feeling in her lower stomach. The doctor examines her and states;
"Well, I can tell you that you'll need to be buying lots of nappies in about nine months time."
"Am I pregnant? That is wonderful news."
"No, you have bowel cancer."
I needed a new wallet. I went into a store and found one guaranteed for life. I asked the clerk, "Don't you have one that will last longer than this crap?"
The Doctor calls. "I have good news and bad news. Which will you have first?"
"The good news." "OK. The reports say that your cancer has metastasized all over and that you have 48 hours to live."
"You call that good news? It must be the bad news. What could possibly be worse?"
"Well, the bad news is that I tried to call you yesterday."
A man isn't feeling well, so he goes to see his doctor. The doctor examines him, and then asks to speak with his wife. The doctor tells his wife that her husband has cancer. The wife asks "can he be cured?".
The doctor replies "there's a chance we can cure him with chemotherapy, but you will need to take care of him every day for the next year - cooking all the meals, cleaning up the vomit, changing the bed pan, getting little sleep, washing diapers, driving him to the hospital for daily treatments, and so on".
When the wife comes out to the waiting room, the husband asks her what the doctor said.
The wife answers "He said that you're going to die".
A man hears from his doctor that he has cancer and only has six months to live. The doctor
recommends that he marry a nice Jewish girl and move to a secluded ranch in Montana.
The man asks,
"Will this cure my cancer?" "No," said the doctor, "but the six months will seem much longer!
Doctor: The tests show that your cancer is advanced. You have six months to live.
Patient: But, doc, I can't pay off my medical bills in six months.
Doctor: In that case, I will give you a year.
Doctor: "It's bad news, you have cancer and Alzheimer's."
Patient: "Oh well, it could be worse - at least I don't have cancer."
--
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