As of July this year I went to see my new specialist. She told me that My first attack was called Transverse Myelitis. She said they usually see this two ways.
1. In a car accident : This is when someone spinal cord is jarred from impact.
2. Factory workers; This is when someone is pounding on concrete and jumping in and out of machines,robotics like the profession of millwrights, machinist. This is where I fell in the category .
So in my case, I work long hours, was on call and always work hard at my job.
She explained:
It is like someone getting a cold, just an everyday cold. You don't know where you got it. It is a virus. You deal with it get better.
In my case works the same way, I got a cold. But my spine was weak, pulled muscles etc.. My brain said hey there is something wrong here and the spinal cord did what it was suppose to do.It shut my body down. Now in cases that doctors do know what has happen. The first 36 hours are critical to get the patient up and walking again. So the brain and spinal cord will say oh it just a cold all is good. But since no one knew what was going on I stay in the bed in the hospital for 8 days. Then they took me to physiotherapy for 2 days. Then was released to go home. I never say a physiotherapist for 2 years. My wife help me with exercises the best way she can and does all my transfers.
The doctor said along with this I am hyper-sensitive to weather change. For example I got a little sunburn and 4 months later I felt the affects. Not a pleasant feeling.
There is a chance of me walking but since I had no physiotherapy for such a long span, it would take double the time to be up and walking again.in my case it will take a real miracle. I will never run any marathons, And I might need a walker or even a cane to get around.
As of June of this year Home Services cancelled my physiotherapist said that there was no need for it. So I am back with my wife doing our own exercises.
As for my second attack they are still investigating and more test are to follow. I will keep you posted to their findings.
A small note if someone would like to hear more of my story in depth or has any questions you can write to me at: spidermonkey62@hotmail.com
Tuesday, 26 July 2011
Monday, 25 July 2011
The Day My Life Changed
In this Blog i am going to write how we have and are being treated. Please people just because people are in wheel chairs doesn't not mean that we are contiguous. You won't catch it. In the past 3 years we have had such a hard time. Trying to get a little help or support is so hard to deal with. My wife has been and still my 300% caregiver. I am not able to do things I used to do. I can not do outdoor chores even the simple ones.
When I received Home Services they put us on such a tight lock down that it was so hard to breathe some days. These people are suppose to make life easier and they made our life very difficult.
The treated my wife and I with so much disrespect it was hard to watch. I was always taught to treat people with respect. And with me in the chair and being so weak. It made me very depressed. There were times I thought it would be better if I was not here and then they would get off my wife's back. She had to do everything.
On many occasions they wanted to put me in a home.
My wife told them on many occasions that this was our home and we are staying together. What they don't seem to understand. We have a rare and unique love we want and need to be together. Take us apart and we will lose the will to live.
I no longer have Home Services they have discharged me saying that they don't have what I need.
I want to express when someone gets sick or an rare illness we are still the same person. Treat us with respect, treat us like how you want to be treated. Don't treat us like a number. We are human. Treating us with disregard and that we don't matter just as long as you get what you think is your job and you get a pay. It doesn't work like that. You took an oath to help people, regardless what there health issue is.
Another issue i would love to state is Contractors. Their job is to do the work get paid. But they forgot one big issue. Listen to the person that is paying you for the job to be done. They have a big problem listen to women like they don't know anything. And then to disrespect a person in a chair is just not right. We had some work done in our home to make things more accessibly for me. which at this time is still not accessibly for me even though the work has been done. I have asked many parties to help while this was taken place and was pushed aside and said you know nothing.. With the work done in our home and has not been done correctly or safely there are areas in our home that i can't get too. And is very frustrating.
I also want to state that before I became disable. I help all that needed it. Even though I was tired and had allot of our own work to do I still found time to help friends and neighbours. Once I became disable they have treated us like we have a major plague.
Just to get a simple job done is like pulling teeth.
I though neighbours help neighbours. When did it become one sided.
When I attending my specialist appointments we stayed in Hotels, Where does it say that people that are disable are millionaires. Where does it state that they can be treated like garbage, and decide themselves to charge more then stated. And in there defense they say you have the money .
When did our society change that people treat people different. Is it that you are afraid of change. Or just don't want to learn.
I hope my Blog will open some eyes and help people learn to treat people whatever there disability is with the same dignity of someone that is not disable .
I also wanted to thank my wife for all she has done and still does every day and that she has her own disability to deal with everyday and never complains and takes care of me the best way she can.
So remember that your life can change in a blink of an eye. How would you survive.
When I received Home Services they put us on such a tight lock down that it was so hard to breathe some days. These people are suppose to make life easier and they made our life very difficult.
The treated my wife and I with so much disrespect it was hard to watch. I was always taught to treat people with respect. And with me in the chair and being so weak. It made me very depressed. There were times I thought it would be better if I was not here and then they would get off my wife's back. She had to do everything.
On many occasions they wanted to put me in a home.
My wife told them on many occasions that this was our home and we are staying together. What they don't seem to understand. We have a rare and unique love we want and need to be together. Take us apart and we will lose the will to live.
I no longer have Home Services they have discharged me saying that they don't have what I need.
I want to express when someone gets sick or an rare illness we are still the same person. Treat us with respect, treat us like how you want to be treated. Don't treat us like a number. We are human. Treating us with disregard and that we don't matter just as long as you get what you think is your job and you get a pay. It doesn't work like that. You took an oath to help people, regardless what there health issue is.
Another issue i would love to state is Contractors. Their job is to do the work get paid. But they forgot one big issue. Listen to the person that is paying you for the job to be done. They have a big problem listen to women like they don't know anything. And then to disrespect a person in a chair is just not right. We had some work done in our home to make things more accessibly for me. which at this time is still not accessibly for me even though the work has been done. I have asked many parties to help while this was taken place and was pushed aside and said you know nothing.. With the work done in our home and has not been done correctly or safely there are areas in our home that i can't get too. And is very frustrating.
I also want to state that before I became disable. I help all that needed it. Even though I was tired and had allot of our own work to do I still found time to help friends and neighbours. Once I became disable they have treated us like we have a major plague.
Just to get a simple job done is like pulling teeth.
I though neighbours help neighbours. When did it become one sided.
When I attending my specialist appointments we stayed in Hotels, Where does it say that people that are disable are millionaires. Where does it state that they can be treated like garbage, and decide themselves to charge more then stated. And in there defense they say you have the money .
When did our society change that people treat people different. Is it that you are afraid of change. Or just don't want to learn.
I hope my Blog will open some eyes and help people learn to treat people whatever there disability is with the same dignity of someone that is not disable .
I also wanted to thank my wife for all she has done and still does every day and that she has her own disability to deal with everyday and never complains and takes care of me the best way she can.
So remember that your life can change in a blink of an eye. How would you survive.
The Day My Life Changed
I will be continuing my story. Since the day I came home from the hospital, there was no possible way for me to go outside. The only way I could get there was to open the doors and sit by the door frame and smell the fresh air. I long to go outside. So my wife came up with an idea and was willing to try. She got me as close to the stairs as she could and had a chair at the bottom of the stairs. She got me to stand and I held on to here and she walk me down the stairs. Now keep in mind I have no ablitity to walk so she had to move my legs and hold on to me. I had upper strength. So approx. 1.2 hour later I was sitting down in the yard and very very tired. This was not done on a regular bases. We were able to get a temporarily ramp but that last a total of 5 minutes. Due to the fact that it was so flimsy that with the weight of the chair with me in it and my wife pushing me up the ramp it started to buckle. So we called the company back and said this will not work.
My wife was doing all my care. We got some home care come in but had to wait for 2 weeks before we saw anyone. We were given a nurse, support worker for the time being.
The nurse was coming in 2 times a week, and the support worker the same. But they we little help, since my wife still had to do all the work, to get me where i needed to go.
Now with me being paralzed and the doctors not knowing why they were very nervous in even trying to transfer me in any manner.
I had sponge baths for over a year. and so desperately want to go and have a bath. But since it was not set up for me, and worried about falling it just was not possible.
I did many trips to the hospital by ambulance I was spiking fevers. Doctors not knowing what is going on or what was causing them.
My family doctor made me some appointments with some specialist. We did the appointments they we just a confused. They did many many test MRI, Cat Scans, Blood Work, and everything came back negative. I was getting very frustrated and depressed.
In all the frustrations I asked to see other specialist in bigger cities, in hopes of coming up with answers to this. They agreed but it was going to take some time to figure what kind of doctor to send me too.
There was few things we need to get done for me. We desperately need a ramp built but did not have the funds to do so. We look for different organizations or people to help but we fell short in finding any one to help. Now in fact there were people coming and saying what can we do do to help, but when we said what was needed they either didn't return or said sorry we just can't do it.
After about one year we finally got a deck and ramp built. You can not know how much this meant to me. That i could come out of the house on to the deck and be able to sit and listen to the birds and trees russle. But i still needed my wife assistance to get me there. If I wanted to go down to the grass my wife needed to take me down the ramp. It was steep to go down and going up felt like i was going up hill. But it was done and I was happy more than words could explain.
That night I went back in to the house and was sitting on the couch and my wife and were talking. She said you have a birthday coming up. I said I have a deck and able to get outside, I am home and happy. Still not understanding why I can't walk. But I was at home.
That night I spiked another fever. So back to the hospital I went. They said I got an infection. Gave me some medications and call my wife to come and get me.
The next day I asked if I could go back out and my wife was getting me ready to go back and sit on the deck. But my wife asked me what was wrong. I told her that I was not feeling well all of a sudden.
Now at all times before I go to the hospital my wife asked me do you want me to call the ambulance. This time she didn't do that.
I remember sitting on the couch and I just fell over. The ambulance was here pretty quick. but they also knew me quite well. Back to the hospital i go again. And this time they kept me for 8 days.
This time I became very depressed. I did n't know what was going on and they kept doing test but not shedding any light to me what was going on.
So I was imagine the worse. But I was wrong. It was not a Stroke or Heart Attack. The test came back negative .I was so relieved. But still didn't know what was going on.
So as of this time I was now and still paralzed from the waist down and had new problems that I had lost my whole right side.
You can never imagine how i was feeling and how scared I was. My wife stayed by my side night and day. The only time was for a few hours when she had to go home and get me a change of clothes. She got permission from the doctor so she could stay.
They gave me some high doses of Predisone.
The doctor that was taking my case said that she was going to a larger city to see if she could get some answers to what was going on. She had an idea but wanted to make sure before saying anything.So before she left my wife said I want to take him home. And she said OK. Home was the best medicine for him. So my wife made arrangements to get me to go home and got the medications and supplies for me to come home. She came back after my nap but I woke before she got back and I was very emotional , that she was not there. After she arrive she was packing up my last minute things and said she needed to go find a chair to go outside. I loved that idea.
So my wife wheeled me outside and to the car I looked at her and said where are we going she said home. That is where you belong. I was crying in happiness. But just to make sure I asked her many time. I was so glad to see our home and deck.
I got a call from my family doctor that they were sending me to see another specialist. We had a long drive to get there and this was going to be my first long trip in 2 years. I was so excited, maybe finally we were going to get some answers.
Once we got to our destination we went and meet this new doctor. He told us that I had something called Transverse Myelitis. I was glad to finally get a name. So the first attack was TM the second attack they were not sure , since the doctor explained it does not usually attack twice. But sometime in very rare occasion but when a second attack happens it is within days or weeks not months. So off we go again to get more testing. I was starting to feel like a human pin cushion.
I have seen many new specialist and have them scratching there head. To this day I have been told that my first attack was for sure Transverse Myelitis,.. The second attack they are not sure and are still investigation's and doing test. I will be so happy on that day they they can tell me why this happen and will I be able to walk again.
The first day when this all happen to me was July 2008 and it is now July 2011 and I am still in a chair and still fighting everyday for strength to walk again and get some answers.
My wife was doing all my care. We got some home care come in but had to wait for 2 weeks before we saw anyone. We were given a nurse, support worker for the time being.
The nurse was coming in 2 times a week, and the support worker the same. But they we little help, since my wife still had to do all the work, to get me where i needed to go.
Now with me being paralzed and the doctors not knowing why they were very nervous in even trying to transfer me in any manner.
I had sponge baths for over a year. and so desperately want to go and have a bath. But since it was not set up for me, and worried about falling it just was not possible.
I did many trips to the hospital by ambulance I was spiking fevers. Doctors not knowing what is going on or what was causing them.
My family doctor made me some appointments with some specialist. We did the appointments they we just a confused. They did many many test MRI, Cat Scans, Blood Work, and everything came back negative. I was getting very frustrated and depressed.
In all the frustrations I asked to see other specialist in bigger cities, in hopes of coming up with answers to this. They agreed but it was going to take some time to figure what kind of doctor to send me too.
There was few things we need to get done for me. We desperately need a ramp built but did not have the funds to do so. We look for different organizations or people to help but we fell short in finding any one to help. Now in fact there were people coming and saying what can we do do to help, but when we said what was needed they either didn't return or said sorry we just can't do it.
After about one year we finally got a deck and ramp built. You can not know how much this meant to me. That i could come out of the house on to the deck and be able to sit and listen to the birds and trees russle. But i still needed my wife assistance to get me there. If I wanted to go down to the grass my wife needed to take me down the ramp. It was steep to go down and going up felt like i was going up hill. But it was done and I was happy more than words could explain.
That night I went back in to the house and was sitting on the couch and my wife and were talking. She said you have a birthday coming up. I said I have a deck and able to get outside, I am home and happy. Still not understanding why I can't walk. But I was at home.
That night I spiked another fever. So back to the hospital I went. They said I got an infection. Gave me some medications and call my wife to come and get me.
The next day I asked if I could go back out and my wife was getting me ready to go back and sit on the deck. But my wife asked me what was wrong. I told her that I was not feeling well all of a sudden.
Now at all times before I go to the hospital my wife asked me do you want me to call the ambulance. This time she didn't do that.
I remember sitting on the couch and I just fell over. The ambulance was here pretty quick. but they also knew me quite well. Back to the hospital i go again. And this time they kept me for 8 days.
This time I became very depressed. I did n't know what was going on and they kept doing test but not shedding any light to me what was going on.
So I was imagine the worse. But I was wrong. It was not a Stroke or Heart Attack. The test came back negative .I was so relieved. But still didn't know what was going on.
So as of this time I was now and still paralzed from the waist down and had new problems that I had lost my whole right side.
You can never imagine how i was feeling and how scared I was. My wife stayed by my side night and day. The only time was for a few hours when she had to go home and get me a change of clothes. She got permission from the doctor so she could stay.
They gave me some high doses of Predisone.
The doctor that was taking my case said that she was going to a larger city to see if she could get some answers to what was going on. She had an idea but wanted to make sure before saying anything.So before she left my wife said I want to take him home. And she said OK. Home was the best medicine for him. So my wife made arrangements to get me to go home and got the medications and supplies for me to come home. She came back after my nap but I woke before she got back and I was very emotional , that she was not there. After she arrive she was packing up my last minute things and said she needed to go find a chair to go outside. I loved that idea.
So my wife wheeled me outside and to the car I looked at her and said where are we going she said home. That is where you belong. I was crying in happiness. But just to make sure I asked her many time. I was so glad to see our home and deck.
I got a call from my family doctor that they were sending me to see another specialist. We had a long drive to get there and this was going to be my first long trip in 2 years. I was so excited, maybe finally we were going to get some answers.
Once we got to our destination we went and meet this new doctor. He told us that I had something called Transverse Myelitis. I was glad to finally get a name. So the first attack was TM the second attack they were not sure , since the doctor explained it does not usually attack twice. But sometime in very rare occasion but when a second attack happens it is within days or weeks not months. So off we go again to get more testing. I was starting to feel like a human pin cushion.
I have seen many new specialist and have them scratching there head. To this day I have been told that my first attack was for sure Transverse Myelitis,.. The second attack they are not sure and are still investigation's and doing test. I will be so happy on that day they they can tell me why this happen and will I be able to walk again.
The first day when this all happen to me was July 2008 and it is now July 2011 and I am still in a chair and still fighting everyday for strength to walk again and get some answers.
Saturday, 23 July 2011
The Day My Life Changed
I am writing this Blog so people will understand that your life can change so fast with out any warning. I was always a good worker, worked more than I needed to. Always willing to help anyone that needs it. I have always had a large heart and am and still a very passion person.
My wife and I decided that we wanted a slow lifestyle so we made plans to move to the country. We we working to get the house in order, as well as the landscape. We thought things were good. Being more relaxed and taking our time. As the weeks passed I noticed that my legs and feet were getting sore. I was just thinking it was because I was starting to relax more. And really didn't think much of it. Then we were getting ready to go out and visit a gem and mineral show. Later that day my foot was really hurting and needed to sit down allot. My wife said i think we need to go see a doctor. But new to the area I didn't have a family doctor. So we went to an after-hours clinic. The Doctor there examine me. But with no test. Said that I pull a muscle in my Sciatica and to go home and rest for 1-3 months and I would be fine. So home we went.
A few days after seeing the doctor I was taking it easy but the pain in my foot was getting worse and worse. So we decided to go see an accupurist to see if they could help the next day. So I was getting ready for bed around 10 pm. I was in the wash room and I felt what was like a taizer on the back of my spine and my legs felt like jelly. I was able to get to the bedroom but with a great deal of pain. I was in such unbelievable pain it felt like i had Charley horses times 100 in both legs. My wife came running.She tried to rub my legs and the pain increased. So she gave me a few Advil's got some pillow to separate my legs and I finally fell asleep.
And Now This is when My Life Changed.
The next day my wife came in to wake me up so we could get to our appointment. And I realized when I tried to get up I could not. My legs were not working. My wife got a chair to see if i could sit in it, but getting me out of bed was a struggle. After a few minutes, my wife called the ambulance..
When the ambulance service came they thought I was joking. They said the only way i was getting out if this house was to get up and walk to the bed outside. Once they realized that I was serious, my wife got me out of bed and put me in a make shift wheelchair from the ambulance worker . They took me outside but still refused to put me on the bed, So my wife took me out of the chair and put me on the bed. Only then did they started to buckle me up and transport me to the hospital. Once I got to the hospital they were dumb folded and had know idea what was going on. So they sent me the the City to a bigger hospital so they could do an MRI. My wife called and they told her to stay home and not to come that i was going for some test. She asked if she could go and they said no. So she stayed home and waited for a phone call. They called her that night after I got back at 1am in the morning and told her to come and get me that I was released. The MRI showed nothing wrong. So my wife drove to the hospital to come and get me. Once she got there they told her to go back home because i was admitted. They told her that I could not use crutches so there was no sense of going home til another doctor came in to look at me. The nurses on the night shift were very ignorant and yelled at my wife and said I told you to go home. My wife finally left but she was not happy about it. She was pretty scared and not knowing what was going on. I was in the hospital for over 10days. The care i got was not the greatest. When I asked if I could have a shower , they brought me a bowl of water and soap and said go ahead. My wife stayed with me as long as she could till they asked her to go. My wife gave me a shower, changed my bed, and even helped me get out of bed into a wheelchair so we could go outside.None of the nurses would not even move me they said that they didn't want to hurt themselves, and said they would go get a lift. My wife was not happy and she found a way to make it work . Finally this new doctor that just moved to the area said he needs to have another couple of test and back I went to the City for more test. The test they did came back negative, but this whole time never said what they were looking for. The doctors were stumped. They said there is no reason why you can't walk. But only could i not walk my bladder and bowls were not working either. So this doctor said lets try some intervenes with Predisone and see if that helps at all. I seem to feel a bit better but still was not able to walk or move my legs. After spending 10 days in the hospital my wife ask the doctor if he can come home. She was doing all the work at the hospital so he would be more comfortable at home. The doctor agreed, But she said he could go home if we had a ramp. So my wife called around for a temporarily ramp and they said that most of the places she called said they could not get to the house for a month. The Doctor said how are you going to get him in the house . I said i will find a way. My wife went to a local Lion's Club and rented a wheelchair. The Doctor said we are going to book an ambulance to take him in the house. I was being released at 3pm , so my wife went ahead of me to get supplies before I got home. The nurse came to me and said since you have been release here is a chair and you have to go sit in the waiting room, since we need your bed. I called my wife around 6 pm and told her that the ambulance services said that he was not a priority and he would have to wait til they were free to take me. So my wife got a friend and came to pick me up at the hospital to take me home. I finally got picked up at 8pm . Once we got home we got some neighbours together and 5 people picked up the chair with me in and up the stairs and into the house I went. I was so happy to be home. And from that day I was released to almost a year I stayed prisoner in my home with no way of getting outside.
My wife and I decided that we wanted a slow lifestyle so we made plans to move to the country. We we working to get the house in order, as well as the landscape. We thought things were good. Being more relaxed and taking our time. As the weeks passed I noticed that my legs and feet were getting sore. I was just thinking it was because I was starting to relax more. And really didn't think much of it. Then we were getting ready to go out and visit a gem and mineral show. Later that day my foot was really hurting and needed to sit down allot. My wife said i think we need to go see a doctor. But new to the area I didn't have a family doctor. So we went to an after-hours clinic. The Doctor there examine me. But with no test. Said that I pull a muscle in my Sciatica and to go home and rest for 1-3 months and I would be fine. So home we went.
A few days after seeing the doctor I was taking it easy but the pain in my foot was getting worse and worse. So we decided to go see an accupurist to see if they could help the next day. So I was getting ready for bed around 10 pm. I was in the wash room and I felt what was like a taizer on the back of my spine and my legs felt like jelly. I was able to get to the bedroom but with a great deal of pain. I was in such unbelievable pain it felt like i had Charley horses times 100 in both legs. My wife came running.She tried to rub my legs and the pain increased. So she gave me a few Advil's got some pillow to separate my legs and I finally fell asleep.
And Now This is when My Life Changed.
The next day my wife came in to wake me up so we could get to our appointment. And I realized when I tried to get up I could not. My legs were not working. My wife got a chair to see if i could sit in it, but getting me out of bed was a struggle. After a few minutes, my wife called the ambulance..
When the ambulance service came they thought I was joking. They said the only way i was getting out if this house was to get up and walk to the bed outside. Once they realized that I was serious, my wife got me out of bed and put me in a make shift wheelchair from the ambulance worker . They took me outside but still refused to put me on the bed, So my wife took me out of the chair and put me on the bed. Only then did they started to buckle me up and transport me to the hospital. Once I got to the hospital they were dumb folded and had know idea what was going on. So they sent me the the City to a bigger hospital so they could do an MRI. My wife called and they told her to stay home and not to come that i was going for some test. She asked if she could go and they said no. So she stayed home and waited for a phone call. They called her that night after I got back at 1am in the morning and told her to come and get me that I was released. The MRI showed nothing wrong. So my wife drove to the hospital to come and get me. Once she got there they told her to go back home because i was admitted. They told her that I could not use crutches so there was no sense of going home til another doctor came in to look at me. The nurses on the night shift were very ignorant and yelled at my wife and said I told you to go home. My wife finally left but she was not happy about it. She was pretty scared and not knowing what was going on. I was in the hospital for over 10days. The care i got was not the greatest. When I asked if I could have a shower , they brought me a bowl of water and soap and said go ahead. My wife stayed with me as long as she could till they asked her to go. My wife gave me a shower, changed my bed, and even helped me get out of bed into a wheelchair so we could go outside.None of the nurses would not even move me they said that they didn't want to hurt themselves, and said they would go get a lift. My wife was not happy and she found a way to make it work . Finally this new doctor that just moved to the area said he needs to have another couple of test and back I went to the City for more test. The test they did came back negative, but this whole time never said what they were looking for. The doctors were stumped. They said there is no reason why you can't walk. But only could i not walk my bladder and bowls were not working either. So this doctor said lets try some intervenes with Predisone and see if that helps at all. I seem to feel a bit better but still was not able to walk or move my legs. After spending 10 days in the hospital my wife ask the doctor if he can come home. She was doing all the work at the hospital so he would be more comfortable at home. The doctor agreed, But she said he could go home if we had a ramp. So my wife called around for a temporarily ramp and they said that most of the places she called said they could not get to the house for a month. The Doctor said how are you going to get him in the house . I said i will find a way. My wife went to a local Lion's Club and rented a wheelchair. The Doctor said we are going to book an ambulance to take him in the house. I was being released at 3pm , so my wife went ahead of me to get supplies before I got home. The nurse came to me and said since you have been release here is a chair and you have to go sit in the waiting room, since we need your bed. I called my wife around 6 pm and told her that the ambulance services said that he was not a priority and he would have to wait til they were free to take me. So my wife got a friend and came to pick me up at the hospital to take me home. I finally got picked up at 8pm . Once we got home we got some neighbours together and 5 people picked up the chair with me in and up the stairs and into the house I went. I was so happy to be home. And from that day I was released to almost a year I stayed prisoner in my home with no way of getting outside.
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