Friday, March 1, 2013
Fidgety-Fairy-Tales
If you live in the Twin Cities, this is a great production to check out: Fidgety-Fairy-Tales
The first set of performances listed below are free to the public.
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Tuesday, February 26, 2013
My Rights As A Patient
I'm excited to have guest bloggers as I continue to recover from a serious accident. Continuing on the theme of self advocacy Nicole in Australia writes about her desired
rights as a patient.--Allyson
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rights as a patient.--Allyson
My Rights As A Patient
My right to knowledge
inclusive of the big words, the ups and downs and the real facts good and bad.
My right to have you care
for how I feel just as much as give me a diagnosis or a treatment plan.
My right to hear to say
you have listened to my reality and value this as true knowledge.
My right to a treatment
plan that places me in the drivers seat.
My right to say I am
scared, anxious, frightened and that I don’t know what to do.
My right for you to know I
am here in need of your help to find me some answers.
My right to details,
results and explanations as they are discovered.
My right to ask questions,
lots of them and for you to do your best at answering them.
My right to know and fully
understand my problem is in my body not “all in my head.”
My right to be heard by an
attentive and understanding professional who chooses to seek
understanding by looking behind my silence, fear, tears, pain, anxiety, behaviour
or frustrations to really hear what I am saying.
My right to disagree with
how you have treated me.
My right to walk away and
seek further advice.
My right to be treated
with respect in treatments despite me asking you the same questions, results
that keep coming back normal, presenting to you with the same symptoms or
having no reaction to medications given.
My right to have you treat
me as a person and not just a patient.
My right for you to
understand that you can make mistakes and that it is my responsibility as the
person seeking treatment to call you on these.
My right to hear that you
don’t know what is going on either.
My right for you and I to
work as a team.
My right for you to tell
me that you see that I am frustrated, anxious and in pain and that you will
help me by taking me seriously.
My right for you to know
the minute I leave this space my experience continues.
© Nicole Fernley
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My rights as a patient.docx
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Friday, February 8, 2013
Question Everything!
Today I went to my family practitioner as a follow up to my head and neck injury. I learned why I have not been able to write a post since the short one after returning from the hospital. I look at a page and stare. That does not happen to me often. I usually find something to say either if it's face-to-face or in writing, maybe not profound, but something.
"Do you feel you've had a loss of cognitive functioning?" the doctor asked.
"I know there is information I should know, but I can't retrieve it. Also, I've tried to keep up my blog, I have nothing creative to say."
"Seems like you've had a loss. The sheer fatigue form the injury and the pain can cause that response too," the doctor said. "What's hard is you look like you are tracking, but I see now that you are not following everything I say."
My warning to my daughter's personal care attendant (PCA) when I returned home was, "If something I say seems off--question it--question everything!" Her chuckle reminded me that I had asked her to come an hour earlier for work than I had intended that morning.
While in the office the doctor went over all of the reports from the hospital. I had already been to two doctors and had a list of tests to schedule. I asked him to check on an ultrasound that was ordered on my liver. Neatly typed next to it was a finding that no one had told me about AND I clearly remembered no one had told me. There were also clear directions to get an ultrasound on both areas--"sooner than later."
Of course after determining a loss of my cognitive functioning I knew that my doctor may not believe me when I told him that I could clearly remember that no one told me. "Check the discharge orders," I sort of commanded. "Does it list it there?"
"No. There is nothing here. They missed it. I really don't think they are going to find anything serious though," he tried to comfort me.
"But what if they do? Or what happens with another patient when a doctor forgets to include the order and doesn't mention the finding to the patient?
When I was in the hospital my husband was home with my children much of the time. I was left as patient and advocate while on significant doses of pain killers. As advocacy is my passion I forced myself to focus, pay attention and question everything. No matter how much I did it obviously was not enough.
After my appointment my doctor "released" my medical records. Now I can read them on-line and while I can't review them all at once without fatiguing, over the next couple of days I will read every word. I quickly noticed two other things that were not accurate.
When I said "question everything" to my daughter's PCA when speaking with me, I said it laughing at myself knowing that I may not be completely accurate right now. But when I say to you as one advocate to another "question everything" when it comes to medical reporting it is no laughing matter.
--Allyson
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"Do you feel you've had a loss of cognitive functioning?" the doctor asked.
"I know there is information I should know, but I can't retrieve it. Also, I've tried to keep up my blog, I have nothing creative to say."
"Seems like you've had a loss. The sheer fatigue form the injury and the pain can cause that response too," the doctor said. "What's hard is you look like you are tracking, but I see now that you are not following everything I say."
My warning to my daughter's personal care attendant (PCA) when I returned home was, "If something I say seems off--question it--question everything!" Her chuckle reminded me that I had asked her to come an hour earlier for work than I had intended that morning.
While in the office the doctor went over all of the reports from the hospital. I had already been to two doctors and had a list of tests to schedule. I asked him to check on an ultrasound that was ordered on my liver. Neatly typed next to it was a finding that no one had told me about AND I clearly remembered no one had told me. There were also clear directions to get an ultrasound on both areas--"sooner than later."
Of course after determining a loss of my cognitive functioning I knew that my doctor may not believe me when I told him that I could clearly remember that no one told me. "Check the discharge orders," I sort of commanded. "Does it list it there?"
"No. There is nothing here. They missed it. I really don't think they are going to find anything serious though," he tried to comfort me.
"But what if they do? Or what happens with another patient when a doctor forgets to include the order and doesn't mention the finding to the patient?
When I was in the hospital my husband was home with my children much of the time. I was left as patient and advocate while on significant doses of pain killers. As advocacy is my passion I forced myself to focus, pay attention and question everything. No matter how much I did it obviously was not enough.
After my appointment my doctor "released" my medical records. Now I can read them on-line and while I can't review them all at once without fatiguing, over the next couple of days I will read every word. I quickly noticed two other things that were not accurate.
When I said "question everything" to my daughter's PCA when speaking with me, I said it laughing at myself knowing that I may not be completely accurate right now. But when I say to you as one advocate to another "question everything" when it comes to medical reporting it is no laughing matter.
--Allyson
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Thursday, January 24, 2013
First Hand Experience As Self Advocate
All of January the focus of this blog has been on advocacy--for self and others. In the wee hours last Friday morning I blacked out and struck my head against a cast iron bathtub. I spent four days under careful scrutiny of the ER, Trauma and Neurosurgery units at the University of Minnesota. While it was decided that I was dehydrated other reasons for the black out are not yet known. I'm being treated for a nasty knot on my head, a broken nose and possible ligament damage in my neck. I'm seeing the world through a cervical collar for the next few weeks. And yes, there are stories to tell as my strength comes back to sit at my laptop for longer periods of time.
Allyson
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Allyson
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Thursday, January 17, 2013
First Ever Raffle at Seasons of Potential
What fun! I have asked some of the vendors of the products I LOVE most to provide giveaways. Most of them graciously agreed. So here goes. First ever raffle for Seasons of Potential. Look for a new raffle each Friday!
Drumroll please! This week's giveaway is PrepositionBuilder an app by Mobile Education Store.
a Rafflecopter giveaway
Self Advocacy: Listen To And Trust Yourself
A Guest Blog Post From Ken Barlow...
I knew when I was younger that something wasn't quite right. I remember in college that I really never could sleep. I didn't need to.
As I knew this wasn't normal I sought out the college mental health counselor who suggested I see a neurologist. I had an EEG, a brain scan, which came back clean. I told the doctor that the EEG results must be wrong. He said, "No, you are."
For the next twenty five years I went on with life and my massive ups and downs. I thought it was all in my head and that there was nothing wrong with me.
In 2006 I moved to Boston for a job closer to my mom after my dad unexpectedly passed away. My family stayed in Minnesota while my kids finished school. I flew back and forth between the Twin Cities and Boston every weekend. I had no problem keeping up with this rigorous schedule. At least that's what I thought. I started to lose weight and wasn't sleeping. Because of these symptoms I went to a doctor who prescribed something to help me sleep.
Usually my lows were the worst at the end of August which again brought me to the doctor. She thought I had an August grass allergy and gave me a prescription and an inhaler. Neither of which helped. Turns out it was the declining daylight which was a 'trigger' for my depression.
One night I mixed another medicine I was taking for a familial hand tremor (harmless hereditary shaking) with the sleeping aid. I ended up in the hospital. While there doctors on staff asked about my schedule and why I was taking a sleeping aid. I explained that I hadn't been able to sleep and I had that problem my whole life. But I also had times when I couldn't get out of bed. I wasn't sad. I just didn't care about anything.
With all of this in mind, along with additional testing and interviews it was determined that I had bipolar disorder. Initially it was diagnosed as the less severe type known as Bipolar II. Some things happened in the hospital that provided the doctors with additional information such that they instead diagnosed me with Bipolar I. I was isolated in a 24 hour watch for another week before finally being released.
Six years later I have come full circle from anger and denial to acceptance. To me this is the single most important part of my success (so far) at managing my illness. The problem is that I knew the whole time that something was wrong, but it took the hospitalization to finally get the right diagnosis and the long sought after help I needed.
My advice for others--listen to and trust yourself. It's the same hindsight you hear from people finally diagnosed with other conditions. I wish I had gone for a second and third opinion. I KNEW something wasn't right with me but I just assumed the first doctor was correct even though my gut (and head) thought differently. Adults should go to their family doctor who will hopefully suggest a psychiatric evaluation. And if they don't request it.
If I could travel back in time to 1982 I would find the campus counselor and say to him, "My brain scan looks fine, now what do we do?"
Ken Barlow, Founder and President
The Wellstone-Barlow Mental Health Initiative
www.wellstonebarlow.org
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I knew when I was younger that something wasn't quite right. I remember in college that I really never could sleep. I didn't need to.
As I knew this wasn't normal I sought out the college mental health counselor who suggested I see a neurologist. I had an EEG, a brain scan, which came back clean. I told the doctor that the EEG results must be wrong. He said, "No, you are."
For the next twenty five years I went on with life and my massive ups and downs. I thought it was all in my head and that there was nothing wrong with me.
In 2006 I moved to Boston for a job closer to my mom after my dad unexpectedly passed away. My family stayed in Minnesota while my kids finished school. I flew back and forth between the Twin Cities and Boston every weekend. I had no problem keeping up with this rigorous schedule. At least that's what I thought. I started to lose weight and wasn't sleeping. Because of these symptoms I went to a doctor who prescribed something to help me sleep.
Usually my lows were the worst at the end of August which again brought me to the doctor. She thought I had an August grass allergy and gave me a prescription and an inhaler. Neither of which helped. Turns out it was the declining daylight which was a 'trigger' for my depression.
One night I mixed another medicine I was taking for a familial hand tremor (harmless hereditary shaking) with the sleeping aid. I ended up in the hospital. While there doctors on staff asked about my schedule and why I was taking a sleeping aid. I explained that I hadn't been able to sleep and I had that problem my whole life. But I also had times when I couldn't get out of bed. I wasn't sad. I just didn't care about anything.
With all of this in mind, along with additional testing and interviews it was determined that I had bipolar disorder. Initially it was diagnosed as the less severe type known as Bipolar II. Some things happened in the hospital that provided the doctors with additional information such that they instead diagnosed me with Bipolar I. I was isolated in a 24 hour watch for another week before finally being released.
Six years later I have come full circle from anger and denial to acceptance. To me this is the single most important part of my success (so far) at managing my illness. The problem is that I knew the whole time that something was wrong, but it took the hospitalization to finally get the right diagnosis and the long sought after help I needed.
My advice for others--listen to and trust yourself. It's the same hindsight you hear from people finally diagnosed with other conditions. I wish I had gone for a second and third opinion. I KNEW something wasn't right with me but I just assumed the first doctor was correct even though my gut (and head) thought differently. Adults should go to their family doctor who will hopefully suggest a psychiatric evaluation. And if they don't request it.
If I could travel back in time to 1982 I would find the campus counselor and say to him, "My brain scan looks fine, now what do we do?"
 |
| Ken Barlow |
Ken Barlow, Founder and President
The Wellstone-Barlow Mental Health Initiative
www.wellstonebarlow.org
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Tuesday, January 15, 2013
Reducing The Stigma Associated With Mental Illness
I came across this new initiative and could not share it quickly enough with others. This project is focused on reducing stigma associated with mental illness and is a collaboration between Dave Wellstone and Ken Barlow.
To find out more visit their website at Wellstone-Barlow Mental Initiative and to demonstrate your support in their efforts visit and like their Facebook Page.
What a great partnership!
--Allyson
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They are requesting stories about experiences dealing with mental illness.
To find out more visit their website at Wellstone-Barlow Mental Initiative and to demonstrate your support in their efforts visit and like their Facebook Page.
What a great partnership!
--Allyson
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Monday, January 14, 2013
Kahn Academy: Changing How We Think About Education
 |
| Salman Kahn Founder of Kahn Academy |
In this Ted Talk: Let's use videos to reinvent education Salman Kahn gives a history and an explanation of what Kahn Academy set out to achieve. As he explains, it began when he created a few You Tube tutorials on math for his nephews. In a short period of time his audience grew worldwide.
As a result Salman Kahn created Kahn Academy, a non-profit organization, now offering lectures on Math, Biology, Chemistry, Physics, Cosmology and Astronomy, Organic Chemistry, Finance and Capital Markets, Microeconomics, Macroeconomics, Computer Science, Healthcare and Medicine, and Test Prep. All of these lectures are free and can be found at: http://www.khanacademy.org/.
Salman Kahn uses a visual approach to learning and mixes in an easy going personality and sense of humor. But his success is based more on an educational model and approach. A teacher or student selects a lecture based on where the individual learner is and what he needs to know. By the mere ability of being able to push a rewind button a student can repeat the lesson as many times as needed to master a concept.
Instead of delivering one lecture for all students, each student in effect has a lecture customized for them. Some teachers assign these lectures for homework and "flip the classroom" as they now are able to focus on individual needs. With private investments from the Gates Foundation and other organizations Kahn has been able to create collaborative projects with teachers and their classrooms to test these methods and gather data.
Last summer I watched my ten-year-old mesmerized with these videos. She learned multiplication facts and the beginnings of long division over the summer. She had minimal progress in both subjects during the school year. Part of it was that while in a special education classroom the expectations and exposure to these concepts were lower than for her peers. With an iPad in hand my daughter could decide for herself if this was something she wanted to learn.
And learn she did.
I'm also struck that Kahn Academy's website is alive. By that I mean if Salman Kahn finds a subject that he feels warrants attention he creates a lecture. I happened upon his website today and there was a link to a talk on the history behind Les Miserables. I appreciated this information as I saw the movie last weekend and left with questions about where this event fit into the French Revolution. He saw that people were confused and he did something about it.
Recently I have read critical reviews of Kahn's work and while I have not found a review that I agree with I find each fascinating. For the first time in a long time the discussion about education has become dynamic and exciting.
Most importantly the focus is on the individual learner and mastery. If it works, who can argue with that?
I'm along for the ride and can't wait to see where we go.
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Sunday, January 13, 2013
Just Ask Her...
She shouldn't?
She won't ever?
She can't?
She might not be able to?
She musn't?
Just ask her...
Then step out of her way and cheer her on.
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She won't ever?
She can't?
She might not be able to?
She musn't?
Just ask her...
Then step out of her way and cheer her on.
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Saturday, January 12, 2013
Rekindling My Curiosity About Beauty Pageants
This past week two headlines caught my attention.
Tonight is the broadcast of the Miss America Pageant. While I have not watched a beauty pageant in over twenty years, I plan to watch when Alexis Wineman takes to the stage with her platform, "Normal is Just A Dryer Setting, Living with Autism." If she is one of the fourteen finalists, she will perform a stand up comedy routine for the talent competition.
Her story caught my eye and rekindled my curiosity about beauty pageants as did Tasha Schuh, Ms. Wheelchair USA, featured in Gillette Children's Speciality Healthcare website. Tasha, has written a memoir about her experience, My Last Step Backward.
Both of these women sought out opportunities to try things they never thought possible. Their stories teach us about hope, promise and possibility.
--Allyson
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First Ms. America Contest With Autism
Tonight is the broadcast of the Miss America Pageant. While I have not watched a beauty pageant in over twenty years, I plan to watch when Alexis Wineman takes to the stage with her platform, "Normal is Just A Dryer Setting, Living with Autism." If she is one of the fourteen finalists, she will perform a stand up comedy routine for the talent competition.
Her story caught my eye and rekindled my curiosity about beauty pageants as did Tasha Schuh, Ms. Wheelchair USA, featured in Gillette Children's Speciality Healthcare website. Tasha, has written a memoir about her experience, My Last Step Backward.
Both of these women sought out opportunities to try things they never thought possible. Their stories teach us about hope, promise and possibility.
--Allyson
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First Ms. America Contest With Autism
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