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Member since '10
Chrissy
-
Artist (also certified to to teach art K-12)
status:
New blog post: http://lifeparalyzed.blogspot.com/2011/07/control-freak-with-no-control.html
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Chrissy
replied to topic:
Bowel Program Questions
Thanks for the tea recommendation. I went to see my physiatrist recently & she had given me several suggestions. I'm following up on each one separately so we can narrow in on what's effective & what'...
Chrissy
commented on
Disabled Artists
To be honest, I'm not sure how copyrighting works in terms of artwork. I mean throughout history there have been artists painting in similar styles, during different movements (surrealist, impressionist, cubism, pop art, futurist, minimalist, etc.). When I think about artists like Picasso & Braque, some of their cubist paintings are near identical. Then you have artists like Andy Warhol that used familiar (copyrighted) imagery, like Mickey Mouse & Campbell soup in his pop art paintings. I'm not sure how it all works, but if it's an image by a living artist, you should do some research before using it, or reproducing it (if you intend to profit from it). Interesting question. I'm contracted with AMFPA & I'm still a little fuzzy on reproductions rights & such. Now that most artists post stuff on the web, it is important to try & protect your original work & give artists credit when reposting other people's images.
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Chrissy
replied to topic:
What function would you like to regain?
1- upper body (especially hands & fine motor skills).
2- the ability to wash, dress, feed & take myself to the bathroom
3- bowel & bladder control
4- sexual function/sensation
5- walking
Honest...
Chrissy
commented on
Gamers
How will movement be controlled? Are there any specific game titles listed yet? I know some people with limited arm & hand movement (and obviouslly paraplegics) can play Nintendo Wii. I personally don't have enough arm control to make getting a Wii worth while. I pretty much stick with stylus driven games on my iPad & Nintendo DS (which I play by mouth). Curious to hear more about the Xbox. I have the original Xbox, which has been collecting dust (along with my Gamecube) since my accident...
Chrissy
updated their status
New blog post:
http://lifeparalyzed.blogspot.com/2011/07/control-freak-with-no-control.html
Chrissy
commented on
JohnF
John, I sent you a reply. I hope it went through ok. FYI- the person I recommended is "Richard" on my buddy list. I hope everything works out well for you. Good luck :)
JohnF
commented on
Chrissy
Chrissy, It's been several weeks since I've been on the site and see that you have changed your photo. Very beautiful photo update. I am writing a book - "Faces of Inspiration - Life After Spinal Cord Injury." The first part of the book will be an introduction to SCI - the the second part will focus on personal profiles. Originally I wanted 50 profiles one from each State. I think your story is worth telling - will you consider being my NJ. I will be posting a group here on the Chris Reeve site, I also have a separate website dedicated to the book, which will be available on Monday. 50 % of sales proceeds will go to Chris Reeve and SCI research. I will be posting a questionnaire on my website and on this site for those who want to participate as a profile participant. You can also email me directly at FacesOfSCI@gmail.com Blessings to all, John
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Chrissy
updated their status
So
cold...can't
seem to warm up today :( Anyone else try a product called "Vasulera?" It's a medical food designed to reduce the underlying causes of hemorrhoids.
Chrissy
commented on
Paraplegic Stands, Revisited
Hey Sam, Thanks for the update! I've been wanting to write about this case on my own blog page for some time now. I wrote to (info@spinalcordmedicine.com) shortly after reading your first blog, the CDRF FAQ sheet and several mainstream media articles. Like you said, the media tends to focus on the hype, and not so much on the details. For those of actually living with SCIs the devil is in the details. I for one, have a C4/C5 complete injury and was very curious if/how this type of research might apply to me. I sent the (info@spinalcordmedicine.com) a list of specific questions, hoping to get some clarification. I did get a response, from an Emily Coons, saying "thanks for your interest, but I'm unable to answer your questions at this time." I tried following up with her last week & she said she forwarded my questions to "the researchers," whatever that means. Anyway, I thought maybe you would have some of the answers I'm looking for. I know we discussed a few of these issues in your first post, so please bear with me. I wanted to send you a private message, but didn't see a button or place on your page. Maybe I overlooked it. Anyway, these are the questions I sent. I'm hoping you won't mind clarifying a few. Please feel free to send me a message. Also, forgive me for this being one huge paragraph. My iPad never recognizes paragraph breaks for some reason :( .........
Questions:
1- I was hoping you could clarify Rob's functional mobility,
before/during this experiment. The CDRF article, and FAQs clearly say he
is paraplegic. However it also says he had a "complete C7-T1 spinal cord
injury and no muscle control below mid-chest." Did he have some control
of his arms and hands, prior to the electric stimulation sessions and is
that a crucial necessity, to this type of treatment?
.................
2- I'm wondering what, if any, practical applications could be used, for
quadriplegics, using this type of treatment? Is this type of treatment
only being targeted for use with paraplegics (I know you said in your last post, it was only for paras. Have you heard anything regarding quads? It's a bit confusing, since Rob has some cervical level injuries).
...................
3. Does/Did Rob have the ability to control the electrical stimulation
device? I'm wondering if he does not have control over the device, if
there are plans to make it so that he can operate the device, himself in
future? I mean, although this experiement has clearly been beneficial
for him, I would hope, the objective is to make him (and others, that
may seek out this type of therapy in the future) more self sufficient,
and as independent as possible.
...............
4. I understand 16 electrodes were inserted onto Rob's nerves, within
the lumbar region of his spinal column. That said, how/where was the
actual stimulation device hooked up to his body? It is something that he
has to wear on his body, at all times (like a catheter, or colostomy
bag)?
.................
5. Is there special/additional care that he has to do (or have someone
help him) to care for the site, where the electrodes were placed? If so,
what does that entail?
........ .....
6. What are the future implications, of this type of treatment, for Rob?
Will these electrodes be permanent implants? If so, what if they stop
working, or become faulty?
..............
7. Most people in the USA with SCIs receive medical benefits through
Medicare/Medicaide. I'm wondering if researchers have thought about the
practicality, of this type of treatment? Do they believe this type of
intensive treatment would be paid for, through private insurance, or
through the govt.? Right now, as I see it, most people in the SCI
community would not be able to afford this type of intensive treatment.
Are researchers considering ways, to make this type of treatment
accessible, to the general SCI population?(I know I asked this already, but have you discussed it any further with the researchers involved?)
..................
8. As of right now, there are only a dozen or so, facilitites in our
country, that are specialized in dealing with SCIs. I happen to live in
NJ, and we only have a couple. I went to Kessler Rehab (where
Christopher Reeve went) after my accident. I can assure you, from direct
experience, there is no way, Kessler could accommodate the hundreds (if
not thousands) of chronic SCI patients, that currently live in our
state, with this level of intensive locomotor training. They are
supposedly the best facility in our state. In my experience (of living
there for almost three months, as an acute inpatient), they were
extremely understaffed. They only had the equipment, man power, and
time, to provide locomotor training to a select few (people with less
severe, incomplete injuries). I have talked to dozens of other people
that went to Kessler, post SCI accidents, and they all report similar
experiences. For people with complete SCIs, the standard course of
rehab, and treatment, is more about education, and preparing patients to
face life in a chair. I'm wondering if the researchers that worked on
this experiment recognize, the lack of resources that currently exists,
and if they have any long term goals, to train, and help implement more
programs like this, to make this type of treatment of a realistic,
viable option, for the millions of us, that already make up the chronic
population? (I brought this up last time too. Have you heard of any new or existing programs that might be adding this type of treatment to their current therapies?)
............
Again, thanks!
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Eddie
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Depression.
Chrissy
updated profile
Chrissy
replied to topic:
Bowel Program Questions
I don't smoke or drink. I also don't believe God did this to me. I ended up paralyzed by making a stupid mistake. I think if there is a God, he/she gave us freewill. I just screwed up, and am paying a...
Chrissy
replied to topic:
Bowel Program Questions
I wish my problem was just some occasional chills during BP. For the last two years my health has gotten worse & worse and my doctors can never give me any good solutions or relief. On BP days I have ...
Chrissy
replied to topic:
Bowel Program Questions
Not a problem. Everyone is entitled to their own opinion. As far as me trying things, and being open to suggestions, within the last six months I've consulted with my regular MD, a rectal surgeon, my ...
Chrissy
replied to topic:
Bowel Program Questions
I've read everyone's advice & appreciate everyone's feedback. That said, what works for one person might not work for another. I'm not sure if you have IBS to contend with, on top of having a SCI. I h...
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My Info
Life; Paralyzed- Blogs about my day to day life, my thoughts and the struggles I face living with paralysis. I also blog about current scientific research, technology & advocacy initiatives related to spinal cord injuries and paralysis. (blogs are reposted from my website www.christinasymanski.com)
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Blog Latest Comments
Autonomic Dysreflexia, or Not Auton...
Hi I am a quad of 21 years and a woman' if the men only knew.......... I type slow, this might take awhile' I use my thu...
by
Athena3000
on Sunday, April 10, 2011
Shitty Day
Hi Chrissy, I am really sorry for your state of mind and the trouble it is causing you. I want to say that I believe...
by
Bill
on Friday, March 18, 2011
Shitty Day
Chrissy, I feel so terrible for you. I am a caregiver to my husband who is paraplegic and the absolute hardest part is t...
by
Renee
on Tuesday, March 15, 2011
Shitty Day
Chrissy, I landed in a wheelchair 9/15/2002 (T-4/5). This happened 3 months after I turned 50 and my divorce was final....
by
Ginny
on Tuesday, March 15, 2011
Shitty Day
Chrissy I so appreciate your giving words to thoughts I know my mom has had ever since her accident over 8 years ago. S...
by
zuzu
on Tuesday, March 15, 2011
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