Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night? Days so rich in experience and life it seems impossible that they were only days?
My day started with an initial consultation for Mrs PS. Mrs PS has just joined the Enable Me pilot project and I will be her personal trainer for the next several weeks. She will turn 90 during this period. She has started to be a bit wobbly on her feet. Her goals were to improve her balance and walking. When I asked what 'improve' meant to her -- she said that she wanted to feel more confident when she was walking, that she didn't want to have to think about every step as much, especially when she was turning, and that if she could learn some techniques that she could rely on she wouldn't have to work out where to put her feet every time she wanted to move. Shhhh -- don't tell -- I switched hats -- this is a job for Lisa the conductor, not Lisa the personal trainer. Mrs PS also said that since she fell -- and she quickly pointed out that over two years ago she had had one fall and nobody would let her forget it -- she has lost her confidence. She is not the first person to tell me that it was hard to know if the walking difficulties were actually due to some sort of problem with the legs or were physical manifestations of lost confidence, but regardless, walking was a challenge. I hope that if and when I turn 90 I can fathom the idea of some personal trainer showing up at my door with her exercises and equipment first thing in the morning. I hope that if and when I turn 90 I still believe that that it is worth giving something a go, that things can get better, and that you are never too old to learn a new trick or two.
Next I went to see Mrs BS -- we have been working on managing osteoarthritis and regaining core and leg strength and on mobilizing her hips and knees following hip injuries and replacements. Mrs BS is motivated; she practices and works on everything I show her, and has made brilliant improvements, and is moving through the world relatively pain free. Mrs BP is motivated; she is caring for a husband with a neurodegenerative condition who is in a nursing home and she needs to be mobile and well so she can help him. I knew he was in a nursing home, I knew he had dementia, but today she told me about the neurodegenerative disorder, about how she tries to help him stand and how she gets him in and out of the car when she takes him out of the home for the day. Next week and for a few weeks afterwards I will go with her to the nursing home to see if there is anything I can teach her to make it easier for her to help him; he won't remember that I have been but I hope that I can help her. I will not charge her for my time -- she is a regular client, and I am my own boss and only have to be accountable to myself for how I spend my time. Being self employed can be chaotic and challenging, but when things like this come up and I don't have to ask anyone for permission to do what I feel is right or justify decisions I make around the service I provide I am reminded that I am where I want to be professionally.
I then went to see FG, a young adult with atheosis and dystonia. FG is a force to be reckoned with -- this fiery redhead is a policy officer working at the state disability and discrimination legal centre. I admit it -- I was very intimidated by her when we first met 8 years ago. At the time she was a law student and disability rights advocate, and I a soft spoken and shy little Canadian conductor trying to get an adult program off of the ground. Over the years we have had some heated discussions and debates; she has been an incredibly valuable resource, an advocate for Conductive Education, and a friend. A few months ago she opted for deep brain stimulation -- electrodes implanted into her brain to help her manage her dystonia. It was a brave risky surgery, I believe that she was the first in Australia with cerebral palsy to have the implant -- but it proved the right decision and has helped her tremendously. Until about a month ago, when she had a fall and one of the wires broke. Today we were 'kicking it old-school' -- pulling out the old and almost forgotten tricks that we had worked out several years ago to make living with dystonia a bit more manageable. Today we were talking about emotional rollercoasters; what it is like to struggle, take a risk, get better and then have to go back to struggling again; about getting mentally prepared for another round of risky brain surgery next month; about consoling worried parents when you are worried and scared yourself. I find myself taking mental notes on dealing with set backs and hoping that when faced with adversity, like FG I can 'fall down seven times, stand up eight'. I find myself thinking, once again, how lucky I am to have people in my life that teach me life's little lessons.
From there I went to the hospital -- they had a special deal on just for me today -- I could see two clients for the price of one parking ticket. CW has had her spinal fusion; her surgeon is very pleased with the way it all went. CW looks a bit frankenstein-esque with a mad scar across the front of her throat and a another one from her head to the middle of her back. Last week she pushed to be moved out of ICU -- as her husband put it, her brain was ready, but her body wasn't quite there yet. Today, as CW said, both were ready and she had just moved into her room in the regular ward and is on the mend. She is gearing up for a long rehab period, but already thinking about what we are going to work on first once she is out of the hospital. CW's sister is a nurse and is very involved in everything to do with CW -- but she is currently on the other side of the world. CW assures me that her sister is as involved as ever, calling ICU and getting the updates before CW gets the information. I think about the special bond between sisters and wonder how my sister and my little niece way over there on the other side of the world are doing.
I then went across the hospital to the spasticity clinic where I met KD. She asked me to accompany her to this appointment; we were hoping to get some sort of understanding as to why her spasms have become so constant, so violent, and so painful over the past few months, and of what could be done to make things better for her. The disability health adviser for the Cerebral Palsy Alliance and KD's house manager were there also -- everyone knew KD in different contexts and had different information to bring to the table. As a conductor you never know how you will be received in a formal clinic at a hospital and whether you will be just dismissed because you are not a physio. This doctor that we saw was amazing. We were with him for nearly 2 hours answering questions and discussing what was happening and how things had changed for KD -- he listened to what everyone had to say and treated everyone with respect without regard for our professional disciplines and using the various perspectives to help him put a case history together. Most importantly -- he spoke directly to KD , looked her in the eye, verified everything we said directly with her, and made it clear that he was genuinely interested in her and wanted to try to help her. In fact when he saw the way that she was spasming he offered to come out to assess her in her home where she could transfer and lie comfortably and be spared the horror and indignity that being examined on a standard examination table would have meant for her. I have never heard of a high ranking specialist offering something like this. I was reminded that there are amazing people in positions of authority who are humane and kind and humble, and noted my surprise at this, and noted that I had come in prepared to advocate and fight for KD (and for the validity of my professional opinion), and, noted that my cynicism was perhaps an unhelpful attitude that required adjustment.
Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night? Days so rich in experience and life it seems impossible that they were only days? Amazingly enough most of my days are days like this -- actually I believe that everyday can be like this for everybody -- if you take the time to experience and live and learn.
http://www.mashuptown.com/files/13_Bring_Me_Back_To_A_Day_In_The_Life.mp3
My day started with an initial consultation for Mrs PS. Mrs PS has just joined the Enable Me pilot project and I will be her personal trainer for the next several weeks. She will turn 90 during this period. She has started to be a bit wobbly on her feet. Her goals were to improve her balance and walking. When I asked what 'improve' meant to her -- she said that she wanted to feel more confident when she was walking, that she didn't want to have to think about every step as much, especially when she was turning, and that if she could learn some techniques that she could rely on she wouldn't have to work out where to put her feet every time she wanted to move. Shhhh -- don't tell -- I switched hats -- this is a job for Lisa the conductor, not Lisa the personal trainer. Mrs PS also said that since she fell -- and she quickly pointed out that over two years ago she had had one fall and nobody would let her forget it -- she has lost her confidence. She is not the first person to tell me that it was hard to know if the walking difficulties were actually due to some sort of problem with the legs or were physical manifestations of lost confidence, but regardless, walking was a challenge. I hope that if and when I turn 90 I can fathom the idea of some personal trainer showing up at my door with her exercises and equipment first thing in the morning. I hope that if and when I turn 90 I still believe that that it is worth giving something a go, that things can get better, and that you are never too old to learn a new trick or two.
Next I went to see Mrs BS -- we have been working on managing osteoarthritis and regaining core and leg strength and on mobilizing her hips and knees following hip injuries and replacements. Mrs BS is motivated; she practices and works on everything I show her, and has made brilliant improvements, and is moving through the world relatively pain free. Mrs BP is motivated; she is caring for a husband with a neurodegenerative condition who is in a nursing home and she needs to be mobile and well so she can help him. I knew he was in a nursing home, I knew he had dementia, but today she told me about the neurodegenerative disorder, about how she tries to help him stand and how she gets him in and out of the car when she takes him out of the home for the day. Next week and for a few weeks afterwards I will go with her to the nursing home to see if there is anything I can teach her to make it easier for her to help him; he won't remember that I have been but I hope that I can help her. I will not charge her for my time -- she is a regular client, and I am my own boss and only have to be accountable to myself for how I spend my time. Being self employed can be chaotic and challenging, but when things like this come up and I don't have to ask anyone for permission to do what I feel is right or justify decisions I make around the service I provide I am reminded that I am where I want to be professionally.
I then went to see FG, a young adult with atheosis and dystonia. FG is a force to be reckoned with -- this fiery redhead is a policy officer working at the state disability and discrimination legal centre. I admit it -- I was very intimidated by her when we first met 8 years ago. At the time she was a law student and disability rights advocate, and I a soft spoken and shy little Canadian conductor trying to get an adult program off of the ground. Over the years we have had some heated discussions and debates; she has been an incredibly valuable resource, an advocate for Conductive Education, and a friend. A few months ago she opted for deep brain stimulation -- electrodes implanted into her brain to help her manage her dystonia. It was a brave risky surgery, I believe that she was the first in Australia with cerebral palsy to have the implant -- but it proved the right decision and has helped her tremendously. Until about a month ago, when she had a fall and one of the wires broke. Today we were 'kicking it old-school' -- pulling out the old and almost forgotten tricks that we had worked out several years ago to make living with dystonia a bit more manageable. Today we were talking about emotional rollercoasters; what it is like to struggle, take a risk, get better and then have to go back to struggling again; about getting mentally prepared for another round of risky brain surgery next month; about consoling worried parents when you are worried and scared yourself. I find myself taking mental notes on dealing with set backs and hoping that when faced with adversity, like FG I can 'fall down seven times, stand up eight'. I find myself thinking, once again, how lucky I am to have people in my life that teach me life's little lessons.
From there I went to the hospital -- they had a special deal on just for me today -- I could see two clients for the price of one parking ticket. CW has had her spinal fusion; her surgeon is very pleased with the way it all went. CW looks a bit frankenstein-esque with a mad scar across the front of her throat and a another one from her head to the middle of her back. Last week she pushed to be moved out of ICU -- as her husband put it, her brain was ready, but her body wasn't quite there yet. Today, as CW said, both were ready and she had just moved into her room in the regular ward and is on the mend. She is gearing up for a long rehab period, but already thinking about what we are going to work on first once she is out of the hospital. CW's sister is a nurse and is very involved in everything to do with CW -- but she is currently on the other side of the world. CW assures me that her sister is as involved as ever, calling ICU and getting the updates before CW gets the information. I think about the special bond between sisters and wonder how my sister and my little niece way over there on the other side of the world are doing.
I then went across the hospital to the spasticity clinic where I met KD. She asked me to accompany her to this appointment; we were hoping to get some sort of understanding as to why her spasms have become so constant, so violent, and so painful over the past few months, and of what could be done to make things better for her. The disability health adviser for the Cerebral Palsy Alliance and KD's house manager were there also -- everyone knew KD in different contexts and had different information to bring to the table. As a conductor you never know how you will be received in a formal clinic at a hospital and whether you will be just dismissed because you are not a physio. This doctor that we saw was amazing. We were with him for nearly 2 hours answering questions and discussing what was happening and how things had changed for KD -- he listened to what everyone had to say and treated everyone with respect without regard for our professional disciplines and using the various perspectives to help him put a case history together. Most importantly -- he spoke directly to KD , looked her in the eye, verified everything we said directly with her, and made it clear that he was genuinely interested in her and wanted to try to help her. In fact when he saw the way that she was spasming he offered to come out to assess her in her home where she could transfer and lie comfortably and be spared the horror and indignity that being examined on a standard examination table would have meant for her. I have never heard of a high ranking specialist offering something like this. I was reminded that there are amazing people in positions of authority who are humane and kind and humble, and noted my surprise at this, and noted that I had come in prepared to advocate and fight for KD (and for the validity of my professional opinion), and, noted that my cynicism was perhaps an unhelpful attitude that required adjustment.
Do you ever have days that you look back on amazed that so many wild and wonderful things can happen between leaving your house in the morning, and coming home that same night? Days so rich in experience and life it seems impossible that they were only days? Amazingly enough most of my days are days like this -- actually I believe that everyday can be like this for everybody -- if you take the time to experience and live and learn.
"It is shocking to find how many people do not believe they can learn, and how many more believe learning to be difficult. Muad'Dib knew that every experience carries its lesson."
--Frank Herbert (Dune)
http://www.mashuptown.com/files/13_Bring_Me_Back_To_A_Day_In_The_Life.mp3