A Train to Portland

This fall we are planning a trip to Eastern Europe. We are not planning to rent a car since the car would be of little use in most European cities and are planning to be dependent on public transportation. Public transportation is much better in Eastern Europe than it is in much of the United States although it is unclear how much of their public transportation will be wheelchair accessible. We decided to test how easy it was to get around with nothing but public transportation by planning a trip to Portland Oregon. The plan was to park at the local park and ride, take the bus to the train station, take the train to Portland and then use the Portland light rail to get around Portland.

We plan to do this with another couple. The man we're going with suffered a spinal injury at roughly the  same time that I did and has a similar level of injury so we expected to encounter relatively similar problems. Verna and I drove to the local park-and-ride and waited for the bus. After the bus was a half hour late and it looked like there was some danger of missing the train, we decided to abandon the first leg of our public transportation journey and to simply drive to the train station.

We met our friends at the station and were offered a special line to board the train and also the opportunity to board before other passengers. Amtrak has a ramp to allow wheelchairs to get on the train. It is a little steep at the end and I asked for help because I was a little afraid of becoming unstable in the steep portion like getting up was no real difficulty. they put us in a compartment where seats were removed in one area allowing wheelchairs to be parked. The area was a little bit small and I simply transferred into a train seat and stow the wheelchair for the rest of the journey allowing my friend to have the entire space.

To train the Portland is gorgeous running along Puget Sound for much of its length and then toward the end of along the Columbia River. The Portland station is in the middle of downtown and less than two blocks away there is a light rail station which can take you too much of Portland. An added bonus is that in downtown Portland the light rail is free. Light rail stations are elevated a couple of feet so that the station and the floor of the train are at the same level. There is a small ramp which bridges the gap between the train and station allowing a handicapped person to roll into the train. The hotel was only a couple of stops from the train station and we discovered, fortuitously, a nice food court at the tram stop allowing us to pick up lunch on the way to the hotel. We stayed at the Marriott in a room labeled as a handicap room although, other than some bars in the bathroom, I could not see much difference from a regular hotel. The door was heavy and difficult but not impossible to open from a wheelchair. out

After a nap we visited the Portland Saturday market, a collection largely craft stalls in a park and neighborhood on the Columbia River. The one stroll that I really remember was one which offered to sculpt a garden gnome in your shape.

That evening we went to a nice restaurant and came back to the hotel.

The next day we visited Portland Chinese garden. They have laid out has so that people in wheelchairs can get to much of the garden which has many interesting plants and a giant Koi pond.

One of the things that we learned on the trip was not to unbalance the wheelchair. On the way down I had a piece of luggage strapped to the front of the wheelchair on luggage carriers. The carriers worked well but the luggage, while small, was also that's happiest thing that we carried and coming down a steep ramp off of the train the wheelchair fell forward until I caught it with my arm. There was at least one other occasion when all of that weight on the front of the chair made life difficult. The conclusion was that we might carry less weight on the wheelchair but the weight that we carry should be balanced.

Blake Island

I have been going sailing with the group called footloose sailing. This group  provides the opportunity for handicapped people to go sailing. They have a number of able-bodied volunteers to help get people in the boats. They have a lift on the dock which can lower someone who cannot otherwise get in a boat into the boat. For people whose arms are limited they have boats where the controls are electric and can be run with a joystick. Throughout the summer they have days where disabled people will go out on their boats with a volunteer to help and supply knowledge.

The major event of the summer is a trip to Blake Island.  Blake Island is a state park in the middle of Puget Sound. There is an Indian Lodge on the island which does regular salmon cookouts. There are mooring docks and worry Louise allowing people to take boats over from Seattle, is about a two-hour motor, and a stay at the island. The park has a number of camping locations. Every year footloose organizes a Blake Island trip. Volunteers go over on Thursday and reserve a number of campsites. On Saturday morning the footloose boats and the number of boats contributed by interested parties load the camping gear for people who have signed up including those who are disabled.

This year we had five people with wheelchairs, several folks with walkers and canes and a group Down's syndrome. We also had a number of spouses, significant others and able-bodied volunteers. On Saturday morning everybody met at the Elliott Bay Marina on the Seattle waterfront and were assigned to boats. We had one person in an electric wheelchair. These devices way over 300 pounds and the group has no facilities to get them onto a boat so he went over with a tour group that visits the Indian Lodge. The rest of us piled into boats with all of our gear.

I took a small footstool which I intended to use as an aid to help me get out of and into my wheelchair. Unfortunately I had failed to communicate to my wife that we needed the boat with us rather than with our luggage which went on a separate boat. Verna was well aware of the fact that we needed to stool but failed to mention it. I thought she had sent it with the regular luggage and sent people searching for the stool when in fact Verna had kept it safely with the stuff that we needed on the boat. In the end it showed up and I was able to use it to get on the boat.

While this was supposed to be a sail it was fairly obvious as we set out that the sound was dead calm and that this was turning into a motor. We did not even attempt to raise the sale on the way over.

We got there and landed at a floating dock.there were some doubts as to whether I could get up the ramp to the dock but I was able to do this by grasping both sides of the railing on the walkway and pulling myself up. The campgrounds look like the picture a number of tents in a dry grassy field. There were greener parts of the park and one of the things that we noticed was a number of the very tame deer grazing on the grass in these areas. I saw groups of deer grazing within 20 feet of a playground full of children. Obviously these animals are aware that nothing bad is going to happen to.
   The funniest thing that happened was an incident in the evening. The only person on the trip in an electric wheelchair (which weighs 500 pounds) came over with a tour boat since it would be impossible for him to come in the sailboat. He came with an attendant. At some point he wandered off and his attendant was looking for him. He walked up to me and said "have you seen Brian?"

I responded "who's Brian".

He said "he's the guy in the wheelchair."

I told this story back at the campfire to the entire group which included about five people in wheelchairs and they completely broke up.

Solstice Parade

This Saturday I marched in the Fremont solstice Parade. The parade is a wild assortment of artistic types that runs through Fremont a neighborhood of Seattle which among other things is proud of a statue of Lenin located it what it calls the  "center of the world". I marched with a group of atheists who were carrying a representation of the flying spaghetti monster.

The monster and is accompanied by a group of pirates representing global warming (well read the Wikipedia article it describes how pirates or rather the lack thereof cause global warming). I was using the dragonfly which allowed me to make the approximately two-mile parade without requiring someone to push me or totally wearing myself out.

The parade always starts with a collection of nude bicyclists. This is an unofficial and not sanctioned but highly loved section of the parade.

The by cyclists are followed by a very eclectic collection of floats. The flying spaghetti monster is of course one of such a collection. This year, because Washington state has legalized gay marriage, there was a wedding cake float featuring a number of same-sex couples.

There was also a giant spider, a Dragon made of plastic garbage and numerous other floats.

A Walking Junkyard

what the picture below illustrates is the technology used to measure the joint position on the device. A shaft, at least a half inch in diameter and probably larger is held by to iron pillow blocks. These are the blue pieces shown at the center of the shot. The position is measured by a potentiometer, that is a variable resistor on the white circuit board at the left. A lot was made of the fact that the electrical connectors are all RJ11connectors that were removed from older telephones. This is an interesting piece of recycling of fairly generic equipment but the RJ11 is by modern standards a fairly large connector. In modern times there might be a high temptation to use wireless to connect everything and if not wireless to use some form of Ethernet  or even to choose a modern micro USB which is widely available for very small amounts of money and takes up significantly less room. More significant, however is a choice of an extremely large and heavy iron pillow block to hold the assembly. These were chosen because they are donated and would certainly do the task in a device where weight is simply not a consideration.

it is very interesting that going to the website they shall walk.org there is a picture of the small Indian child in a wheelchair and a picture of the team shown below in which the only thing that is in a wheelchair is the air tank. I searched the site long and hard and although they are up to version 15 of the suit it is very difficult to see a picture of any version at all.

I am not sure that I am totally shocked by this. Given this problem and given my condition I could walk into Microsoft research today and present a very convincing case that exoskeleton for a paraplegic represents an interesting and novel piece of wearable computation with major novel user interface problems. This is exactly what that organization loves. Okay

Polio

I was at the University of Washington's spinal injury forum  a great place to meet people with similar issues and injuries as well as those whose problems are subtly different. I work at an organization called Disability Pride (another post) with a number of folks with different physical and mental disabilities including a couple of folks with Osteiogenesis Imperfecta. This is a condition leading to a reduced height and fragile bones. Frequently these people are in wheelchairs. At the forum I found myself chatting with a woman in a wheelchair, a little larger than my friends but not very large. She stated that her condition was Osteiogenesis Imperfecta. Of course we chatted about our mutual friends. I thought that everyone in town with that rare condition would know others with a similar affliction.
After a while she introduced her daughter, also in a wheelchair. The daughter was a brown skinned girl, maybe in her mid teens. I asked whether she had Osteiogenesis Imperfecta and she replied "no I had polio'. I almost blurted out "wait you are too young - no one gets polio anymore". Then I reconsidered her skin and the likelihood that she might not be from this country. Suddenly it became clear - who would adopt a child confined to a wheelchair but someone used to living in a wheelchair herself.
The daughter it turns out is adopted and is from India.

Gimp in the Air

I have not been flying since my accident and I had some serious doubts as to whether I would ever want to get in the air again. Eventually a friend who I had introduced a flying persuaded me to try to get in his aircraft. He has a high wing plane and the seats are considerably above the level of my wheelchair and I had grave doubts that I would ever be able to get into the craft. Eventually I was persuaded to try and the solution that we came up with is shown in greater detail below.

Having found that I could fly, the next question is whether I was willing to do so. We went up and took a short 25 mile flight to a local airport with a nice restaurant. We had lunch and then flew home. Pilots called this the one hundred dollar hamburger because at the time the expression was coined it would cost about a hundred dollars to rent a plane and make that kind of a flight. Given fuel prices and the cost of aircraft one hundred dollars might be an underestimate but if you on your own plane it is not that far off.

Once I found that I was both physically and psychologically prepared to fly we decided to go to our college reunion. Every year Caltech has a seminar day in which professors give talks on interesting topics and all of the alumni come down for a grand reunion. This meant that we needed to fly from Seattle to Los Angeles. Since my friend's sister lives a little bit east of Sacramento her place made an obvious intermediate stop. The route we took is shown below. on the first day we flew to the middle of Oregon, refueled and then flew to the Auburn California airport. Auburn was not our first destination but in the air I read a NOTAM, and FAA notification on our original destination and discovered that the runway was closed so we called his sister on our cell phone and shows a new destination.

the next day we flew to Bakersfield and picked up a package that I had arranged to be left at one of the companies headquartered the airport . From there he flew into Van Nuys, a very busy airport with lots of private jets landing. That evening my friend went to his fortieth reunion dinner, I was in a slightly earlier class and I went out to dinner with a friend of mine.

The next day we went to seminar day. The first talk I went to was on a technique for treating spinal cord injuries by implanting an electrical stimulator below the injury. The talk was fascinating and I spent a significant period of time afterwards talking with the professor but that is another blog entry. The other talks I went to covered development of a vaccine for AIDS given by a Nobel Prize laureate who used to be the president of Caltech, a lecture from one of the directors of the Jet Propulsion Laboratory on water in the outer solar system, a lecture on the new Mars Rover, a lecture on climate change and how models of clouds change the picture.

That night we went to the alumni barbecue and met some of my old classmates.

The next day we took off for Auburn where my friends sister had organized a musical get together allowing my friend to demonstrate his fiddling skills.

That night we got to watch an annular solar eclipse. Had we been in Seattle eclipse would be obscured by clouds but in California the viewing was excellent.

On the way north we looked past Mount Shasta giving us some excellent pictures. In Oregon we were forced by clouds to stop at Medford and my friend, who had recently gotten his instrument rating got to file an instrument flight plan for the rest of the trip back to Seattle. We spent the time beyond Medford in and out of clouds eventually flying through a solid line of clouds about a half a mile thick a few miles south of the Renton airport that was our home.

It was a great trip and I realize how much I love flying and I hope I will he be able to continue to do so.

Getting Into the Plane
Transferring from the chair across the landing gear to a bathroom chair

 

Transferring from the bathroom chair to the back of the plane behind the seats

Transferring onto the passenger seat - slid as far back as possible

Bringing my feet over the pilots seat

Braille Display

I was at a board meeting for DisabilityPride when visitor who happened to be blind pulled out an interesting device. It was a Braille display terminal. The device maintained a wireless connection to her cell phone. It had a pad with a series of bumps that could be electrically raised or lowered creating braille characters based on text transmitted from the phone. In this sense it functioned very much like a conventional display terminal except for a blind person.

The display portion of the device look like the picture above taken from an product on Amazon. the actual device was a little more complex with several buttons which appeared to be able to send text possibly in a similar manner to that used by pre-smartphones.

I was, of course, amazed at the technology. I have known for some time that such a device would be possible and probably not extremely difficult to build. In fact, I have her discussion about turning the entire touch sensitive screen of something like an iPad into a braille display using vibration rather than raising of dots. It is a little unclear how this would work or even if it is possible. What is amazing is how practical such a device can be.

As an aside, we might wonder in an age where more devices are learning to speak in more clever ways whether braille is becoming increasingly obsolete as are smart devices are able to read and interpret what they see for blind people without passing through the touch sensitive stage.

Nonetheless I applaud the makers of the device and the users who can use it so effectively.

Braces and the Expert

In previous posts I have stated how many problems I have been having with my braces. one of the suggestions I read was to take the braces to a local expert and asked for advice. I did call the company and after a few conversations they proposed that I come over at a time when they had a national expert on RGO braces to look at the situation and make suggestions.

Two weeks ago I did that. I brought the braces over and their expert, who is well known to my orthotist and has lectured in her classes, took a good look. After a couple of hours of having him look and having me walk back and forth in the parallel bars, he came up with a long list of changes he wanted in the braces. he felt that the hips were too loose, that the feet were at the wrong angle, that some of the attachments were of an incorrect length, that some of the attachments were put on correctly which might account for some mechanical weakness that we had been having and that I should be able to balance in the braces without using crutches as long as I am not moving. This is something that I clearly cannot do at the present time.

There was also a long discussion about alternate knees. There are two options: a purely mechanical system and an electromechanical system. The purely mechanical system uses a rod to lock the knee whenever the foot is resting on the ground and to release it when the foot is raised. The electromechanical system uses a sensor and what sounds like a motor but might actually be a brake to accomplish much the same thing. I plan to come back and try one or both of these systems if it is at all possible. Problems with the knees being locked at all times are a major subset of the difficulties that I have with my current braces and I am eager to explore alternatives although I am not sure quite what they will mean in terms of my gait or anything else that I might do.

I have sent the braces back to the manufacturer to have some of the changes made and plan to hire the local company to make other changes as much as possible. This means that I will spend several weeks to a month without the braces and plan to find other ways to exercise. I am hoping that what I get eventually will significantly improve my ability to walk.

Locked in the Van

a very curious thing happened to me a couple of weeks ago. I had coffee with a friend who has a high cervical injury and is in a motorized chair. Recently she acquired a van which allowed her to driver herself. We agreed to meet for coffee. When she got there she discovered that she was locked into the van with no way to get out.

Let me start by explaining how people spinal cord injuries drive. There are three options for ways to drive depending on the level of injury and the amount of work you are willing to do. for people with low levels of injury and good arm function, one option is to use a fairly ordinary car and after transferring from the wheelchair to the car disassemble the wheelchair and place it in the passenger seat. This is the option that I choose. When there is an able-bodied passenger the wheelchair may simply be placed in the back especially if the car is chosen with a large enough back to easily do this.

A second option is to choose a van with a ramp or a wheelchair lift. The ramp or lift requires a much larger parking space than is required for a car or even for the first option. If the person can easily transfer from the wheelchair into a seat it is possible to set up the van so that he can roll in up the ramp, part the wheelchair next to the driver seat and transfer from the chair into the seat. He can then drive the van from the drivers seat using hand controls similar to the first option.

For people who have difficulty transferring because of arm weakness and this will include most people were using motorized wheelchairs a third option is to drive from the wheelchair itself. In almost all cases this involves a motorized chair. There is no chair in the driver seat and once the chair is rolled up the ramp it is rolled into a special clamp in the driver seat and locked in place. The car may then be driven using hand controls with the person sitting in the wheelchair. When the person wants to leave the van he pushes a button unlocks the lock holding the wheelchair in place and allows him to roll backwards out of the clamp and then out of the van.

Now we go back to our story. The clamp is electromechanical and the release mechanism might fail. This is exactly what happened to my friend. The release mechanism failed to work and she was stuck with no way to get out of her car. I saw her drive up and rolled up into the van so that I could watch her get out  and thus pretty much saw the whole thing. The idea of being stuck in your car with no way to get out is, as you can imagine, very unpleasant. Eventually she was able to call the company that had installed the mechanism. Luckily, someone answered and was able to give her help. He explained that if the mechanism failed there was a lever that you could pull to release the chair. Unfortunately the lever is very deeply under a large electrical wheelchair. It is impossible to imagine someone with limited arm function being able to reach that far and engage the lever. Fortunately, I was there and was able to take the call. I drove my chair out of the van and around to the driver's side. My friend never opens the driver side door. She gets in to the ramp that comes out the side of the van. She had to move the car to create enough room for me to come around to the driver side and feel around for the box locking the chair. Eventually by feel rather than sight I was able to find lever and pull it unlocking the chair.

I found the entire incident very disturbing. Even knowing how to release the chair there is no way that my friend could have done so without external help. We considered several arrangement the most promising of which is to tie the release lever to the driver side door so that opening the door would release the wheelchair. The mechanics of this arrangement are not simple because the chair would have to drive over whatever attachment was made. I am very concerned about the idea that someone could be locked in their car with no way to release themselves.

I discussed this with a friend of mine at pushing boundaries who told me a story about a man who drove into a similar van which was parked in his garage with the ramp already down. After he had driven in causing his wheelchair to lock in the car, he discovered that the battery was dead and the car would not start and, of course, the unlocking mechanism would not work. Fortunately, he was able to use his cell phone to call AAA and they were able to get into the garage and recharge the battery. If he had been unable to use his phone or summon help in other ways he might well have died of hypothermia before he was able to get out.

Walking at Work

After using braces in therapy for several months I finally summoned the courage to take them in to work. I wrote the manager of our physical plant and had him meet me in the garage and walk with me to my office. There are a number of possible barriers. First there is a door between the parking area and the elevators. The door opens on a card swipe and then is fairly heavy - requiring first a swipe from a walker - not really difficult but time consuming. Then you need to put away the wallet and open the door so it will not relock. Then the door needs to remain propped open until you can get it wide enough to get the walker through, then you have to move the walker through the door without being knocked over or jammed in the door. Getting out is another issue but I will deal with that later. Next there are the elevators. There are three elevators. Pushing the button is not difficult but after that you have no idea which door is going to open. Once a door opens you need to be able to get into the door before it closes. If you are moving slowly in a walker, this can be a big problem especially since once you are in front of the door you are too far from the button to push it again.
   After getting help with the door and the elevator I arrived at my desk. I had them lower the office chair to allow enough space for the cushion I brought. Office chairs are not nearly soft enough for the easily damaged skin of people with spinal cord injuries. The next issue is that the chair can both rotate and move. This can be a bad thing if you need to back up to a chair and getting down is essentially a controlled fall. It turns out that a great solution is to place the chair tight in the corner on my cubicle where is is effectively constrained from moving back in two directions. Once the chair is braced it turns out the ability to rotate and roll is an advantage since I cannot move the chair with my legs but can easily pull it with my arms into a good position while occasionally raising my legs if they are dragging.
   Later in the day when I had to use the bathroom I needed to get back in a wheelchair. The maneuvers in the bathroom are way too complex for braces. I had left a wheelchair in the garage and needed to get it. I then remembered that one of the elevators is configured for freight and has a separate button. That made the issue of the elevator simple. Push the button, move right next to the door and when it opens push enough of the walker inside to insure the door will not try to close. After that there is plenty of time to get in. Once the uncertainty about which door is to open is resolved, elevators are not an issue.  It turns out that the building manager called an elevator maintenance person to slow down the door close time. I suspect he left the close time longer on the freight elevator but I no longer needed it.
    So having solved the elevator problem I found myself in the basement on the wrong side of the door to the parking area. The way the door works to get out, there is a motion sensor which unlocks the door. Of course, the sensor is not timed for someone in a walker so by the time you get to the door even if it has sensed you, the door has been unlocked and then relocked. That is OK, if the sensor fails there is a button on the wall to open the door. Of course, the button is on the hinge side rather than the knob side. So if you push the button you need to walk completely to the other side of the door and try to open it before the mechanism times out. My real hope was that someone would show up and I could ask for help. After about five minutes I gave up and called the building supervisor to ask for help. Of course, there is no cell service in the basement so it was back to my desk. When I got back I simply asked for the chair to be brought up.
    When I left I simply got in the chair and went down to the garage. After getting into my car I left the chair in the garage hoping it would not roll away from a position designed so I could drive up and use it.
     They have promised me a button to open the door to the garage. That was, of course, a few months ago but the were also trying to get a button to the door to the street. In ,my chair the door to the street is a bigger issue since it is heavier and the place to swipe your card is much farther from the door. There is no way I am likely to go out on the street in my walker - everything is way too far to walk - so The street door is a lower priority. besides I have managed it in my wheelchair, usually on the second try, so it is possible they can accelerate a solution to the parking garage.
  Well I feel like I should add to the Google bomb causing a Google search for Santorum to go to here.

Segways

   Last weekend I took my first ride on a Segway. I have been wondering for some time whether a paraplegic in braced with little or no movement in the lower part of his body could ride a Segway  and, more importantly, how he might arrange to easily get off and on. I answered one of those questions. If I can get up I can ride the device.
  I found someone in town who rents Segways and is a genuine expert. Then I invited a fairly tall and string friend to help he get on and we went out to his place. I received a long lecture on Segways and how it was necessary to turn on before stepping onto the device and if you push or pull the wrong way the device will scoot off - not really good. We ended up blocking the device  with 4 2x4s. Them two men picked me up and my feet immediately swung under the Segway.  From then it was back to the drawing board.
   The eventual solution involved a shop table which could be raised hydraulically and my pushing myself up rather than being lifted. Once on the device I was able to easily ride it - In the older models you make the unit go forward by leaning and turn by twisting a know in the left of a control bar. This makes the required control of leaning much less precise since you are only controlling a single direction. Newer models use lean for both go and turn.
  The older models also have a single rigid shaft. This is really needed since i need a place to hold on and help balance. One issue is that the bar is apparently quite fragile and made of "unobtainium" . There are commercial approaches to reinforcing the bar although I suspect I am better off looking for a solution that meets my needs and maybe even takes some weight off the bar placing it in other sturdier places.
  I am now looking for places to buy a Segway and good solutions to getting on it.


My friend posted a video here.

Stairs

a day or so ago I was at Pushing Boundaries practicing with my braces. I was talking with my trainer about stairs and whether it was possible to use stairs with the braces. He mentioned that they had some stairs and back that I could test. He has both 3 inch stairs and 6 inch stairs. 6 inches is basically this has standard height for a set of stairs. 3 inches is ridiculously low. However, 3 inches and is a height that I have handled in the past and might reasonably expect to handle. I decided to give them a try.

The stairs were narrow and handrails on both sides which gave you maximum advantage because you could push all of the very solid surface in order to get whatever  leverage was needed by the arms. Once again, these conditions are fairly unrealistic because the stairs are narrower than anyone would ever reasonably make them . Is also the case that you use the rails I had to leave my crutches behind and, of course, the moment I got the top I would find that I need my right choose again.

Getting up was not terribly difficult as you can see. Getting down was another story entirely and barely worked. After thinking about this for a while I realized that what was happening was this: When going up you unweight one foot, swing it up to the higher stair and transfer weight to the higher foot. Then you raise the lower foot and move it up. All well and good and the fact that your weight is on a higher foot helps in raising the lower. Down is different. You unweight a foot and move it to the lower stair. When you put your weight on the lower foot, there is a significant force down on the upper foot. This force makes it difficult, near impossible to raise the higher trailing foot.
   I need to review videos of how people in braces descend stairs. I recall a strange gait where both feet swing as a unit and what I felt may explain why.