My classmates helped me

And so, I was left using my old power chair which still ran. But I was having difficulties with it. I had the feeling the batteries were going.

I emailed the vendor, Tom and he said they were working on the solution for the new power chair's joystick placement. They had put a metal rod under the left arm rest to raise it some. But it only raised it three fourths of an inch.

I emailed and waited.

Two weeks later, or so the tech returned with another bracket for the chair. This one allowed him to position the joystick in the middle of the end of the armrest – where I wanted it in the first place. But he could not move it in or out, up or down, and that was disappointing.

I could touch the joystick. It wasn't in the best spot. It wasn't even close to the set up on my old power chair. But, because I could run the chair a little, I thanked the tech and the vendor.

But the way my hand was bothered me. I had to rest my left hand ON the joystick in order to use it. That made me really nervous. I was so afraid I would bump it accidentally. Even sneezing could be dangerous, and coughing also.

Reluctantly I started out using the chair just when the occupational therapy assistant was working with me. I thought she trusted me with the chair. But I told her I was not sure if I could take it outside the facility.

I think the nursing home therapists just wanted me to have another chair that would run. They knew my old one was going, all the staff did..

The next week my old power chair stopped and would not go anymore. I think I wanted to have the new power chair working so badly, that I said it was working even when it wasn't.

The first week of June I started using the new power chair exclusively.

The tech had tried two different joystick covers. Then we settled on the one I had. But I wondered about it. My arm was not high enough to move away from the joystick. And that really bothered me.

The fact was my left hand had to be constantly re-positioned in order to use the joystick. The joystick was up high enough that I could not use gravity to move my arm forward. I just don't have enough strength in my arm to extend it like you need to to run the joystick.

The first full week of June three classmates came to visit me. My 50th class reunion was to be in July and I could not go. So, they came to me. I was a nervous wreck because the power chair was not working the way that I felt comfortable using it.

We went to a little fast food place for lunch because it was only a couple blocks away and we wheeled and walked over there. It was a bit chilly. But I knew they'd remember the experience better if it was less than comfy. We had lunch and then came back to the nursing home. My one classmate ran the joystick over. I told her I was nervous and afraid that I could not go fast enough. She acted like it was okay and we all pretended that it was.

I was dubious about my new power chair. I also knew I needed to take it out somewhere to try it. That would be the test. I needed to find out how it would work inside a store when I wanted to shop and get somewhere.

They adapted it when I was in bed

So, I could not reach the joystick on the new power wheelchair. The tech was taking the chair to an exit, when I last saw him.

What followed was me waiting and nothing really happening. I emailed the vendor Tom several times to find out what was going on. At first I was told he was busy moving. Then, he told me the parts would be in the next week. Then he said someone was coming the next week to fix the chair, or adapt it. But, that person never showed.

One day, three weeks later, I was just about to lie down which I do in midafternoon to use my laptop – while I have my feet up. The tech came to my door with an aide and asked where my chair was. I was told before that he did not take the chair with him. Instead, he left it in therapy. I told him I thought that's where it was. With that, he left.

When my aide came in to get me ready to lie down, I asked her if they were going to modify my chair and if they wanted me in it. She did not really answer me. So I got ready and got in bed.

The tech eventually brought my chair into the room where I was in bed. He showed me that he had moved the joystick on the inside of the left arm rest. I was so surprised. When he had suggested that, when he first brought the chair, I told him that would not work. I wanted it put in the center of the left arm rest.

After he put the joystick on the inside of the arm rest, he asked me what I thought. I asked him to try to sit down in the power chair and get back up again without bumping the joystick. He could do it. But he had to wiggle a bit to do it. That requires more mobility than I have.

I told him it would need to be repositioned – more in the center of the armrest. I felt the joystick should flip in and out. I also told him it would be helpful if the joystick could be moved in and out as well as up and down.

I got a kind of glazed look and he headed out with the power chair.

As I looked at him exiting my room, for the first time, I noticed there was an oxygen tank bracket on the back of the new power chair power chair. I don't use oxygen. I wondered why it was on there.

It had been such a confusing day. And even after I missed what the tech did to it until after it was finished. I still could not use it.So, I could not reach the joystick on the new power wheelchair. The tech was taking the chair to an exit, when I last saw him.

What followed was me waiting and nothing really happening. I emailed the vendor Tom several times to find out what was going on. At first I was told he was busy moving. Then, he told me the parts would be in the next week. Then he said someone was coming the next week to fix the chair, or adapt it. But, that person never showed.

One day, three weeks later, I was just about to lie down which I do in midafternoon to use my laptop – while I have my feet up. The tech came to my door with an aide and asked where my chair was. I was told before that he did not take the chair with him. Instead, he left it in therapy. I told him I thought that's where it was. With that, he left.

When my aide came in to get me ready to lie down, I asked her if they were going to modify my chair and if they wanted me in it. She did not really answer me. So I got ready and got in bed.

The tech eventually brought my chair into the room where I was in bed. He showed me that he had moved the joystick on the inside of the left arm rest. I was so surprised. When he had suggested that, when he first brought the chair, I told him that would not work. I wanted it put in the center of the left arm rest.

After he put the joystick on the inside of the arm rest, he asked me what I thought. I asked him to try to sit down in the power chair and get back up again without bumping the joystick. He could do it. But he had to wiggle a bit to do it. That requires more mobility than I have.

I told him it would need to be repositioned – more in the center of the armrest. I felt the joystick should flip in and out. I also told him it would be helpful if the joystick could be moved in and out as well as up and down.

I got a kind of glazed look and he headed out with the power chair.

As I looked at him exiting my room, for the first time, I noticed there was an oxygen tank bracket on the back of the new power chair power chair. I don't use oxygen. I wondered why it was on there.

It had been such a confusing day. And even after I missed what the tech did to it until after it was finished. I still could not use it.

This is not what I thought I was getting

Before I go on with the story, I want to tell you something that happened when I got my second full size power chair in 1991. I had asked a vendor I met if he had a power chair that was set up for a customer and was refused or did not work out. I asked if he would be willing to let me have it for what Medicare would pay. He said he had a chair he thought would work for me.. When I saw it, it had most of what I wanted. The seat was rigid and I was afraid it might be uncomfortable. But I rationalized that I could purchase a cushion. The vendor told me the chair as it was was worth $5600. He told me he would take the $3700 that Medicare would pay for it.**This was BEFORE I moved to a nursing home. I told him yes and got the chair. It worked well until after it was five years old.

Back to new power chair story…

One thing he told me was that I did not need a power chair with armrests that flipped up. They were just starting to make manual chairs with flip up armrests. He told me that would not work for me and to remind future vendors about that. That interesting fact had a lot to do with the rest of this story.asked

The tech said he would take the chair and work on the problem of adapting the joystick. I told him I needed some type of adjustable bracket for the joystick that would allow it to be moved up or down, right or left, forward and back. The tech seemed to only half listen to me. He headed toward a facility exit with the power chair.

I wondered what he would do to fix things.

Did the second Medicaid vendor listen?

I was dejected after the experience with Tom the Medicaid power chair vendor. I wondered why he had acted that way. How did he think I would use the loaner chair he brought? We had been working together since August and it was November 2015. I thought they were trying to push me so they could supply a power chair before the end of 2015. Now I knew that would not happen.

I wondered how many other nursing home residents had dealt with the situation. I knew there was another resident at my nursing home who got a power chair in late 2014. He had difficulty moving a manual wheelchair on his own. I thought it was because of neurological or cognitive problems. Somehow, someone thought he would be able to use a power chair. I knew that particular resident wanted one. Unfortunately, after he got it. He had difficulty controlling it. One day he accidentally knocked the drinking fountain off the wall. He had had some other close calls and the chair was taken away from him. It was deemed by the nursing home to be too dangerous. He was put back into his manual chair.I was dejected after the experience with Tom the Medicaid power chair vendor. I wondered why he had acted that way. How did he think I would use the loaner chair he brought? We had been working together since August and it was November 2015. I thought they were trying to push me so they could supply a power chair before the end of 2015. Now I knew that would not happen.

I wondered how many other nursing home residents had dealt with the situation. I knew there was another resident at my nursing home who got a power chair in late 2014. He had difficulty moving a manual wheelchair on his own. I thought it was because of neurological or cognitive problems. Somehow, someone thought he would be able to use a power chair. I knew that particular resident wanted one. Unfortunately, after he got it. He had difficulty controlling it. One day he accidentally knocked the drinking fountain off the wall. He had had some other close calls and the chair was taken away from him. It was deemed by the nursing home to be too dangerous. He was put back into his manual chair.

At a care conference in December 2015 I asked about talking to another vendor/supplier of Medicaid purchased power chairs. The nurse manager told me that I would have to wait until 2016. I felt like a child who was being punished for doing something wrong.

I wished there were some Medicaid entity that I could write to or complain to. I felt the whole thing was not done the way it should have been. All I could hope for was that I would meet a better vendor and have a different experience.

I kept asking about the new power chair. I would mention it to the occupational therapist when I saw her. It just kept hoping someone would find another vendor.

In March I was told that another vendor would come to see me about a new power chair. I met the vendor I'll call Frank in March. He had another man with him I'll call David. But David hardly said anything. I wondered what he was doing there. I guess I should've asked more questions.

Frank asked me what kind of chair I wanted. I told him I wanted the same brand as the chair I already had. He told me due to a government sanction that chair was not being sold in the US. He gave me two other manufacturers. Since I knew virtually nothing about either one, I asked him to recommend one. Was that a mistake? I didn't think so then but later on I realized it might have been.

He picked a manufacturer. He told me he thought I could get the new chair fairly soon. I was kind of surprised because in 2008 it took me eight months or more from the time the occupational therapist did the prescription ordering the chair until it was delivered to the nursing home. But Frank said that would not happen again.

Again, I asked Frank how he would adapt the new chair. This time I actually knew what that brand of power chair looked like. I had seen YouTube videos of it. But those were showing how quickly it would go on rough terrain. I did not want to be a speed demon. I just wanted to be able to get a new power chair that would run well and handle easily with the joystick.

He assured me I would love the chair. I questioned his blanket statement. I asked how it would be set up and he said he could not tell me that. I thought if he could not tell me who could. I showed him my old chair and suggested it be set up similarly. He said he didn't think it could be because it was from a different manufacturer. That's when I thought he was not listening.

I told him I was leery of a loner chair and he did not even suggest it. I also thought the chair was being ordered too quickly. I was afraid if they did not put enough thought into the joystick set up before they ordered it, I might end up with a power chair that I could not use.

Instead of the occupational therapist filling out the prescription order for the power chair, David (the guy with the vendor) did it. I thought this was peculiar. But apparently that's the way Medicaid does it now. I just thought it would have been better if the nursing home's occupational therapist would have made suggestions. She had seen me use the old chair. She also knew my functional limitations. I even asked her if she would make suggestions. She told me it was not her place.

I had an email dialogue with Frank all along. I wanted to make sure that we kept up communication. I never did have David's email. I always thought that was a mistake.

While my head was still a blur with so many unanswered questions, I was told the chair would be delivered in two weeks.

At a care conference in December 2015 I asked about talking to another vendor/supplier of Medicaid purchased power chairs. The nurse manager told me that I would have to wait until 2016. I felt like a child who was being punished for doing something wrong.

I wished there were some Medicaid entity that I could write to or complain to. I felt the whole thing was not done the way it should have been. All I could hope for was that I would meet a better vendor and have a different experience.

I kept asking about the new power chair. I would mention it to the occupational therapist when I saw her. It just kept hoping someone would find another vendor.

In March I was told that another vendor would come to see me about a new power chair. I met the vendor I'll call Frank in March. He had another man with him I'll call David. But David hardly said anything. I wondered what he was doing there. I guess I should've asked more questions.

Frank asked me what kind of chair I wanted. I told him I wanted the same brand as the chair I already had. He told me due to a government sanction that chair was not being sold in the US. He gave me two other manufacturers. Since I knew virtually nothing about either one, I asked him to recommend one. Was that a mistake? I didn't think so then but later on I realized it might have been.

He picked a manufacturer. He told me he thought I could get the new chair fairly soon. I was kind of surprised because in 2008 it took me eight months or more from the time the occupational therapist did the prescription ordering the chair until it was delivered to the nursing home. But Frank said that would not happen again.

Again, I asked Frank how he would adapt the new chair. This time I actually knew what that brand of power chair looked like. I had seen YouTube videos of it. But those were showing how quickly it would go on rough terrain. I did not want to be a speed demon. I just wanted to be able to get a new power chair that would run well and handle easily with the joystick.

He assured me I would love the chair. I questioned his blanket statement. I asked how it would be set up and he said he could not tell me that. I thought if he could not tell me who could. I showed him my old chair and suggested it be set up similarly. He said he didn't think it could be because it was from a different manufacturer. That's when I thought he was not listening.

I told him I was leery of a loner chair and he did not even suggest it. I also thought the chair was being ordered too quickly. I was afraid if they did not put enough thought into the joystick set up before they ordered it, I might end up with a power chair that I could not use.

Instead of the occupational therapist filling out the prescription order for the power chair, David (the guy with the vendor) did it. I thought this was peculiar. But apparently that's the way Medicaid does it now. I just thought it would have been better if the nursing home's occupational therapist would have made suggestions. She had seen me use the old chair. She also knew my functional limitations. I even asked her if she would make suggestions. She told me it was not her place.

I had an email dialogue with Frank all along. I wanted to make sure that we kept up communication. I never did have David's email. I always thought that was a mistake.

While my head was still a blur with so many unanswered questions, I was told the chair would be delivered in two weeks.

The first Medicaid power chair vendor

As we entered 2015 I started having trouble with my power chair.

I knew it was over six years old and I knew it would not last forever. I thought the batteries were probably going. They would cost $400 at least.

My nursing home said I could get a new power chair in 2015.

A vendor showed up in August of that year. Tom (not his real name) told me he could get me anything I wanted. I told him I wanted the same brand of chair. Then he told me he could not do that. He said the company who manufactured my previous power chair were sanctioned by the federal government and were not selling chairs at that time.

I had concerns because I had a lockdown bracket on my old power chair. I have a minivan with a fold down ramp in the rear. That lockdown device latched into a bracket on the floor of my van. If I did not get the same brand in the new power chair, I could not use the existing bracket.. New brackets cost $750. That was a dilemma.

I brought it up to Tom and he said that was something they did not do. I did some emailing online and asked some questions about the lockdown bracket.

Tom wanted to move on and order the new power chair. But I was not comfortable because I did not know exactly how he would set it up. Then, he visited and said he would provide the new bracket for my van's lockdown device and install it. That sounded too good to be true and I figured it probably was.

I kept asking Tom how he was going to adapt the armrests. Power chairs are made differently now and the armrests flip up and move. I was used to the older style kind that were difficult to move. Tom did not explain it to me.

Then Tom said he thought I needed to have a loaner chair. I wondered how they could loan an existing chair to me when I need everything modified so that I can use it with my left hand. He assured me he could do it.

Because he did not explain how the chair would be set up, I was leery. But I eventually told him I would try a loaner chair.

He said he would be in within a couple of weeks.

One day I was working at my computer. All of a sudden Tom knocked on my door. It was the afternoon and later than I would have liked. He brought the chair in. It was high off the floor – probably 23 inches. I am short 5'3". There was no way I could've gotten into that power chair. It also had the joystick on the right. Mine has to be on the left. When I looked at the seat, it was stained. It wasn't horrible or anything. But it did make me cringe a bit.

I asked Tom why he would bring a chair set up with the joystick on the right when he knew I needed it on the left. He just looked at me. I also told him the chair was too high for me to be able to get into it standing. Then, he continued to just look at me.

I told him there was no way I could use the chair the way it was set up.

He told me if I asked him to leave with it, it would sever our relationship. I thought that was a strange thing for a salesman and durable medical equipment provider to say.

With that, Tom left my room.

Subsequently, I emailed him and asked if something could be worked out. But he did not respond.

I found out from the regional long term care ombudsman that Tom felt I was difficult and no longer wanted to deal with me.

I was astounded. I did not think a medical equipment vendor could do this. But this one did.

Then I wondered what vendor could supply another power chair.

My older chair is six years old

Moving to another nursing home in a different city wasn't easy. But then too, I moved away from my power chair vendor. Who would fix my chair now?

I moved to a north central Ohio nursing home in September 2010.

I did not take long for me to have a power chair problem. It happened in May 2011.

My chair just stopped and I thought because it was two years old the batteries were dead. I was out on a shopping trip and we had to get back to my nursing home.

My sister found a power chair tech 10 miles from me who would come to my nursing home and replace the batteries. It was just a matter of the small fee of $375.

But that's okay, my sister or I had been paying it every two years for a while. Medicaid quit buying power chair batteries several years before.

So the power chair tech came and changed out my batteries. I was impressed.

But then, I had trouble with the batteries. On an outing my chair just stopped going, my driver had to call the fire department to get me back into my van.

I ended up going to Columbus to a vendor who told me I just needed new batteries. He told me the power chair tech may have given me a bad set of batteries.

It took me a while to talk the original power chair tech into replacing the batteries without charge.

But in October 2011, he did. After that my chair worked fine.

But that vendor refused to do any more work on my chair. He said he never should've agreed in the first place. But I wondered if that was really the reason. It would certainly have been convenient to keep using him.

Instead, I went to Columbus about once a year to have my chair checked out.

Unfortunately, three years ago I made my last visit there. It is too far away and too expensive for me to make that trip anymore.

There is no vendor in this area.

When my chair turned five years old in 2013, I wondered if Medicaid would ever get me a new one.
My sister mentioned crowdfunding as a way to get others involved in assisting me to get a new power chair.

I talked with my nursing home in 2015 and they told me that Medicaid would purchase a power chair for me.

Since I'd been through that process once, I thought I could get through it again.

But little did I know how complicated it all would be.

Breast cancer and involuntary discharge

I got used to my new power chair. As I said, it wasn't exactly what I wanted. The center wheel drive thing was hard to get used to. I had previously had rear wheel driven chairs.

But over time I got used to it. I went through a lot in the next several years.

In the beginning of 2009 I had my third incidence of breast cancer. During that time I was seeing an oncologist. But apparently he mistook the lump under my arm for infection, or something.

When I found out there was a lump, I stopped seeing him. I found a surgeon close to me and had as many cancerous lymph nodes removed as I could.

Then, I had six months of chemotherapy. Luckily, it was in a town close to my nursing home.

I made every chemo trip an adventure. Afterwards a friend took me out. We went shopping and had lunch. That way I had no time to be nauseous from getting those poisonous cancer drugs.

Chemo ended at the end of 2009.

Trying to get radiation in 2010 was difficult. I went to two different radiation oncologists at two different medical facilities. Neither one of them wanted to treat a quadriplegic female experiencing breast cancer for the third time.

But, with inquiries, I discovered I could go to a major university hospital and get the treatment I needed.

Unfortunately, I had to travel there five days a week leaving the nursing home at 7:30 a.m. I rode in the back of an ambulance which is not my preferred method of travel. But even though it's not what I wanted to do, I was able to listen to music on my way there which was a plus. I even helped the ambulance drivers better find where they were going – since I knew the area.

After 31 radiation therapy treatments I had severe radiation burns on my side, under my left arm. It was quite painful. But I recovered quickly. It always seemed like there was relief when chemo and radiation were done. But I always wondered what would happen afterwards.

I asked my oncologist about further treatment. At first he did not recommend it. Then he suggested Fasoldex Injections. It started out getting those in July 2010. I got a 250 mg shot in my arm. I knew they were supposed to be given in your hip. But since I use a power wheelchair, I guess they thought that would be too difficult.

I went for the shot every 28 days.

In mid-August I received an involuntary discharge letter from the nursing home where I had lived for 14 1/2 years. I was stunned. I knew I had to find another nursing home.

I had a rough time with the chemo and radiation because it wore me out. I was also in full-blown cancer treatment mode. I had warned the nursing home management that it might be difficult caring for me when I was battling cancer. The only other time I did it was when I lived on my own in the community with private caregivers. But, I lived by myself, and could somewhat control my environment. That was difficult to do in a nursing home. I was moody. I took a different stronger antidepressant to try to help with that. But, I don't know that it worked that well.

Even so during radiation it would not have worked as well anyway. Radiation takes its toll on everything including the way medication works in your body.

I had to move about 80 miles away from where I had lived for most of my life. I was moved to a smaller (50 bed) cognitive behavior facility. It was pretty scary when I got here. I was used to a nursing home where most of the people were at least over 75 years old. Most of them had dementia. There were a few combative residents but not anything like where I live now.

Three weeks after I got here, a traumatically brain injured young woman grabbed at me in the hallway. I knew she did not know any better, but she accidentally scratched the full length of my left arm. It was bright red and she broke two layers of skin. I still have scars.

But I moved on and tried to get along. I kept using the power chair that I got in 2008.

First Medicaid power chair 2008

So far in this saga, I am using my third power chair. The first one I got after moving to a nursing home.

The one thing getting a new power chair takes is a lot of time. When I had the 1999 chair for five years, I could tell it was wearing out. They are just made to wear out after that long. Even though many disabled people pay dearly to keep them running longer than that.

In 2008 I wrote letters everywhere. I wrote to my state representative and senator telling them I needed a new power chair. Medicaid was still buying them for nursing home residents, I was told. But I still think they thought it was a luxury for nursing home resident to have one. To me it was no luxury. It afforded me freedom and the ability to get around at least somewhat on my own.

I think the measurements for that chair were taken by the facility's occupational therapist in the spring. Then I waited. And I waited. I wrote more letters.

The power chair I got in 1999 had stopped running in the middle of the store in February. I had to go to the vendor who would supply the one if Medicaid ever decided to purchase it, and asked if they would put a used controller on my chair if I gave it to them my old one when the new one arrived.. They agreed and installed a used controller and I was moving again.

In November 2008 I was told I would be getting the new power chair purchased by Medicaid soon. I wondered when that would be.

They delivered it on December 8. In order to make sure it would go into my lift equipped van, I had a friend come over to watch while we tried it out. They found they had to raise the foot rests because they interfered with the lift. But after that it was okay.

The new chair was the same brand but it was center wheel driven. That was a new concept to me. The chair is more difficult to control. But it does turn and circle easily and quickly.

The next day my friend and I went shopping. There even was a little skiff of snow that I had to deal with. My arm was a bit sore. And I had used a few epithets because of frustration. But all in all, I was getting used to the new chair.

The Voc Rehab power chair

So, as you can see I got two power chairs without all that much trouble. Yes, there were snags. No I did not get exactly what I wanted. But I got most of what I wanted.

Then after I moved to a nursing home, I needed a new power chair. BVR came into the picture again. My counselor was a colleague from the past who thought I should be working at the nursing home where I lived. So he made some arrangements and had me do some writing and developing of plans to get me in that direction. He also provided some rehab engineering that helped to evaluate and update my workstation. I needed a new computer, scanner, printer, monitor etc. BVR helped with that.

But I did not get the new power chair until I became a part-time communications coordinator for the nursing home where I lived. I did their family newsletter and developed an employee newsletter that was passed out once a month. They both were popular.

BVR worked with me and the occupational therapist who evaluated me for the chair had some ideas. We put our heads together and came up with a chair that worked for me. It was different from what I had had in the past and it was a different brand. But, I was able to adapt and use that chair.

Was it the best chair for me? I don't know about that. It was pretty swift and I have to admit I had some problems with it. I felt it went too fast. There were a couple of times I went off my modified van's lift (a 3 foot drop) – into a parking lot – because I could not slow the chair down. You could say that chair had a lot of speed. It would go really well outdoors. It seems in the world of power chairs I seem to almost always get some of what I want – but it's difficult to get all of it.

I knew the next power chair HAD TO BE different for my own safety.

My first larger motor power chair

As they say, truth is stranger than fiction.

Since I could not possibly have made these scenarios up,.  I want to share it with you. Although, it will take a few installments. I will try to break them up so you won't feel like you're reading my version of a book.

I've lived in nursing homes for over 20 years. Since I have moved to nursing homes, I've gotten three power chairs. The first two were supplied when I lived in a nursing home in southeastern Ohio.

My first ever power chair was purchased by the Ohio Bureau of Vocational Rehabilitation (BVR) when I was working a full-time job. Since I already had a job, BVR wanted me to be more mobile and a power chair would assist me with that. The process did not seem scary to me. I went to Columbus to be fitted for the chair at a medical supply store. I thought they had everything right. Back then, I was 37 and living in the community with private caregivers to assist me.

When the chair was delivered to my work office, it was too high off the floor for me to get in it. So I refused it. I knew I had to have that I could use.

My voc rehab counselor called me that same afternoon to ask what the problem was. When I told him, he told me he would get back to me. It wasn't long until I went to the supplier back to Columbus and was refitted for the chair I was supposed to have.

The next power chair I got was purchased by Medicare in 1991. I had just been the part-time manager of a disability conference in Columbus. I had met a vendor. I explained I needed a new power chair and asked if he had any that had been made for a customer and then did not work out for them. I also asked if he would take for payment the $3700 Medicare paid for power chairs back then. He said he would.

It wasn't very long until he found me a chair I could use. Was it the optimum? No, it wasn't. Did it meet my needs? Yes it did. I use that chair from 1991 until 1999. By then, I was living in a nursing home.

How it goes in nursing homes

I have lived in nursing homes since March 1996. Moving into one at age 47 was a challenge. I came from my own home with caregivers to take care of me.

I had worked in the past full-time and part-time. I even worked from home. But it wasn't done as much 20+ years ago.

I have been quadriplegic since  the age of 19 following a fall in my parents home. I walked for 15 years and after that had to sit down to earn an income and get out into the world.

I have worked part time at a nursing home where I lived as a communications coordinator. I have also done volunteer work such as newsletters, activities calendars, and other word processing.

Since 2008 I have written a blog about my nursing home resident experience. You can find it at iadvanceseniorcare.com (formerly Long Term Living Magazine), under my name.