Researchers at the University of Kentucky Department of Rehabilitation Sciences are inviting you to participate in a research study about early intervention services for young children with delayed motor development.
You are eligible to participate in the survey if: • Your child has a delayed motor development, physical disability, cerebral palsy or Down syndrome • Your child is receiving/received early intervention services (such as First steps, Help Me Grow etc.) provided by physical therapists or occupational therapists in the United States in the past 5 years • You are the child’s primary caregiver/guardian
Hi, I just signed up here, I'm a physical therapist and a researcher, I would like to reach out to parents of Cerebral Palsy and post a survey study flyer related to parents of young children with CP. If anyone is interested please let me know.
Hi, I am interested. I am also a HEOR researcher, so I'd be happy to collaborate. All the best, Dominique On Tuesday, June 25, 2019, 11:12:56 AM EDT, Afnan <[log in to unmask]> wrote:
Hi, I just signed up here, I'm a physical therapist and a researcher, I would like to reach out to parents of Cerebral Palsy and post a survey study flyer related to parents of young children with CP. If anyone is interested please let me know.
Great ! thank you. I'm a PhD candidate in the University of Kentucky and I'm conducting a survey study targeting parents of young children with motor delay. I'm waiting for the IRB approval, but I'm trying to find groups and email lists that connect me to parents of young children with motor delay.
Also, why don't you contact public schools. I can put you in contact with my son's former school PT if needed. Dominique On Tuesday, June 25, 2019, 12:18:58 PM EDT, Afnan <[log in to unmask]> wrote:
Great ! thank you. I'm a PhD candidate in the University of Kentucky and I'm conducting a survey study targeting parents of young children with motor delay. I'm waiting for the IRB approval, but I'm trying to find groups and email lists that connect me to parents of young children with motor delay.
Sure, please send me her email. In order to qualify for the study your child must be under 8 years of age and received early intervention services.
> On Jun 25, 2019, at 12:49 PM, Eric BRANDT <[log in to unmask]> wrote: > > Also, why don't you contact public schools. I can put you in contact with my son's former school PT if needed. > Dominique > On Tuesday, June 25, 2019, 12:18:58 PM EDT, Afnan <[log in to unmask]> wrote: > > > > Great ! thank you. I'm a PhD candidate in the University of Kentucky and I'm conducting a survey study targeting
On Tue, Jun 25, 2019 at 12:18 PM, Afnan<[log in to unmask]> wrote:
Great ! thank you. I'm a PhD candidate in the University of Kentucky and I'm conducting a survey study targeting parents of young children with motor delay. I'm waiting for the IRB approval, but I'm trying to find groups and email lists that connect me to parents of young children with motor delay.
Me too and I tired to unsusb and it is impossible. Heard the list changed to Facebook. I joined years ago to get info for my grandson with CP. He is now a young man and just finished his sophomore year at Harvard. Pretty much wheel chair bound and misses classes because of pain but doing well overall. Yoga helps the most and strength training.
I do have a son with CP but he is 15 now. So he may be out of your age range
Sent from Yahoo Mail for iPhone
On Tuesday, June 25, 2019, 11:02 AM, Afnan <[log in to unmask]> wrote:
Hi, I just signed up here, I'm a physical therapist and a researcher, I would like to reach out to parents of Cerebral Palsy and post a survey study flyer related to parents of young children with CP. If anyone is interested please let me know.
I’m not sure how u got my email but I’m interested in any info . As I was primary caregiver of my grandson with CP N BLIND FOR 2 yrs before ministry of bc removed him from my care do to neglect they claim . I have been attempting to fight get him back with no luck cause I not guardian. But what these people don’t understand is what they have actually done to this precious boy . They have no clue to the damage and trauma they have actually caused him by removing him from only person he trusted
I remember you. This e-mail list has been dormant for some time now.
Heather
> On November 3, 2017 at 12:42 PM Kathy Pink wrote: > > > Hello! My name is Kathy Jo Pink. I hope some of you remember me. > > --------------------------------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
On 2017-11-03 12:09, Carla MacInnis Rockwell wrote: > A lot of us have moved over to Facebook. > > Here I am =E2=80=94 https://www.facebook.com/crockwell2 = > <https://www.facebook.com/crockwell2> > > > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=3Dc-palsy
I'm at https://www.facebook.com/profile.php?id=100022750116119
On Fri, Nov 3, 2017 at 12:09 PM, Carla MacInnis Rockwell < [log in to unmask]> wrote:
> A lot of us have moved over to Facebook. > > Here I am — https://www.facebook.com/crockwell2 <https://www.facebook.com/ > crockwell2> > > > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
Burke FanariJust as tom and myrtle after the first drink mrs.He glowed with happy pride. I thought of those cold scenes of his, with their picturesque peasants and cypresses and olive-trees. They must look queer in their garish frames on the walls of the peasant house.bafanari
bafanari http://www.goo.gl/EOtMEo##jjo=13629&kbwmgolhpryostvqra=374938&yxhkgl&iqcqwfguoey&rjzovwxidjskeqsnyg==664782=4772& Burke FanariAnd it made her voice huskier and more charming than ever."What can I do? I shall wait till she sends for me."
OF COURSE KJ! I pay my own bills with online banking now.I use my atm card all the time when I go shopping, or when I want cash. Where are you living now? Your own apartment or in a group home? Thanks,Tamar Raine
On Thu, Jun 23, 2016 at 11:06 AM, Kathy Pink <[log in to unmask]> wrote:
> is Cerebral Palsy progressive ? > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
In general no, but Cerebral Palsy is a catch all diagnosis and some of the specific conditions associated with it can be progressive. For example, spasticity might lead to progressive wear and tear on joints or tendons, scoliosis due to poor tone can get worse over time, etc. Peter Hunsberger
On Thu, Jun 23, 2016 at 1:06 PM, Kathy Pink <[log in to unmask]> wrote: > is Cerebral Palsy progressive ? > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
Cerebral Palsy is not seen as progressive but as an active 59 year old I can say arthritis and pain and tiredness ha increased with age. I don't mind. It's just part of the picture. Also bone density is an issue.
Swami Suddhananda 108 Yogaville Way Buckingham, VA 23921 434-942-8622
On Thu, Jun 23, 2016 at 2:06 PM, Kathy Pink <[log in to unmask]> wrote:
My nlame is Keisha Browning and I just want to introduce myself. I am 35 years old and live in Lexington Kentucky. I look forward to meeting everyone soon.
Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible
Sent using Email (https://itunes.apple.com/app/apple-store/id922793622?pt=814382&ct=Email&mt=8)
Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible
Sent using Email (https://itunes.apple.com/app/apple-store/id922793622?pt=814382&ct=Email&mt=8)
Welcome, Keisha, from Texas Sent from my Verizon Wireless 4G LTE smartphone -------- Original message -------- From: Keisha Browning <[log in to unmask]> Date: 05/20/2016 6:16 AM (GMT-06:00) To: [log in to unmask] Subject: New member Hello all, My nlame is Keisha Browning and I just want to introduce myself. I am 35 years old and live in Lexington Kentucky. I look forward to meeting everyone soon. Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible Sent using Email (https://itunes.apple.com/app/apple-store/id922793622?pt=814382&ct=Email&mt=8) Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible Sent using Email (https://itunes.apple.com/app/apple-store/id922793622?pt=814382&ct=Email&mt=8) ----------------------- To change your mail settings or leave the C-PALSY list, go here:
Welcome. Most of the people here are on Facebook. I don't know why this list isn't, but anyway, if you want to see who I am, as well as any one else who answers is, go to Facebook and search the name.
----- Original Message -----
From: "Keisha Browning" <[log in to unmask]> To: [log in to unmask] Sent: Friday, May 20, 2016 7:16:19 AM Subject: New member
-----Original Message----- From: Keisha Browning Sent: Friday, May 20, 2016 7:16 AM Newsgroups: bit.listserv.c-palsy To: [log in to unmask] Subject: New member
Hello all,
My nlame is Keisha Browning and I just want to introduce myself. I am 35 years old and live in Lexington Kentucky. I look forward to meeting everyone soon.
Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible
I didn't know this list was still alive. Everybody seems to be using Facebook these days being it's faster to get conversations going. Here's a suggestion, why don't we get a Facebook CP group going?
I know I just finished up a mobile communication focus group where we primarily used Facebook to exchange messages with different members. It was very convenient, and we were able to get more data.
Not everyone wants to discuss their healthcare (or similar) issues in an environment like Facebook. There can be too many privacy issues, in particular, for people who may need help setting up even basic access for a web site, least of all configuring the many privacy options of something like Facebook. Peter Hunsberger
On Fri, May 20, 2016 at 11:39 AM, Anthony Arnold <[log in to unmask]> wrote: > I didn't know this list was still alive. Everybody seems to be using > Facebook these days being it's faster to get conversations going. Here's a > suggestion, why don't we get a Facebook
For our mobile communication focus group, we created a private page (only assigned members saw). It didn't appear on my friend's news feed that I was participating in this group.
On Fri, May 20, 2016 at 12:27 PM, Peter Hunsberger < [log in to unmask]> wrote:
> Not everyone wants to discuss their healthcare (or similar) issues in > an environment like Facebook. There can be too many privacy issues, > in particular, for people who may need help setting up even basic > access for a web site, least of all configuring the many privacy > options of something like Facebook. >
Yup, that works. Of course, now you have a new problem; how do people find out about it if it's private by default? A mailing list like this works pretty well.... ;-) Peter Hunsberger
On Fri, May 20, 2016 at 1:07 PM, Anthony Arnold <[log in to unmask]> wrote: > For our mobile communication focus group, we created a private page (only > assigned members saw). It didn't appear on my friend's news feed that I was > participating in this group. > > On Fri, May 20, 2016 at 12:27 PM, Peter Hunsberger < > [log in to unmask]> wrote: > >> Not everyone wants
My name is Kathy Jo Pink . I am 44 years old. I live in Wisconsin. Welcome!
On 5/20/2016 6:16 AM, Keisha Browning wrote: > > > > > > > Hello all, > > My nlame is Keisha Browning and I just want to introduce myself. I am 35 years old and live in Lexington Kentucky. I look forward to meeting everyone soon. > > > > > Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible > > > > Sent using Email (https://itunes.apple.com/app/apple-store/id922793622?pt=814382&ct=Email&mt=8) > > > > Keisha Browning [log in to unmask] (mailto:[log in to unmask]) Impossible = I'm Possible >
There are a lot of Cerebral Palsy groups on FaceBook.
On 5/20/2016 11:39 AM, Anthony Arnold wrote: > I didn't know this list was still alive. Everybody seems to be using > Facebook these days being it's faster to get conversations going. Here's a > suggestion, why don't we get a Facebook CP group going? > > I know I just finished up a mobile communication focus group where we > primarily used Facebook to exchange messages with different members. It was > Á…•ÕÁ¹þvery convenient, and we were able to get more data. > > On Fri, May 20, 2016
B"H flying out to you from Outlook.com [Mail] http://www.huffingtonpost.ca/dr-aubry-tager/media-reports-on-concussions_b_9721472.htmlMost Media Reports On Concussions Tell Only Half The Story Posted: 04/18/2016 3:09 pm EDT Updated: 04/18/2016 3:09 pm EDT Tatyana Tomsickova Photography via Getty Images Share 8 Tweet 0 Email 0Comment 0tumblr reddit ADVERTISEMENT I am a strong advocate for concussion awareness. A while back I predicted that concussion would be a story with legs, not just because of the Will Smith movie Concussion released late last year, but because of the strong connection to sports icons and the power of their voices. Fast forward nearly five months and the story
At 06:18 PM 3/15/2016, you wrote: >Does incontinent come with cp? > >----------------------- > >To change your mail settings or leave the C-PALSY list, go here: > >http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
It doesn't always, but it can start when you get older even if you didn't hsve it before. Ability to "hold it" can diminish with age if there is underlying bladder spasms. If you have an increase in incontinence the first thing you want to rule out is a bladder infection. If thats not it, your doctor might have you give a specimen and then do an ultrasound to see how much is left in your bladder. The more left over, the sooner you need to "go" again, and if you have bladder spasms you may be more likely to
http://www.cbc.ca/news/technology/wearable-technology-for-your-brain-1.3378658?cmp=rss&cid=news-digests-canada-and-world-morning Today's wearable technology can zap your brain, perhaps even safely'It’s really interesting … but we really don’t know what we’re doing,' says neuroscientistBy Laura Wright, CBC News Posted: Dec 25, 2015 5:00 AM ET Last Updated: Dec 25, 2015 6:36 AM ET
http://www.medgadget.com/2015/08/brain-controlled-exoskeleton-to-let-severely-disabled-take-a-walk-video.html Researchers at Korea University and TU Berlin have been working on integrating brain monitoring into a robotic exoskeleton to allow severely disabled people to move on their own. The system uses an EEG cap to detect steady state visual evoked potentials, which are brain signals generated when a person looks at a flashing light. In the experimental setup there’s an array of lights that strobe at different frequencies. The user of the exoskeleton simply focuses on one of the lights, each of which is associated with a specific motion such as “turn left”, and the EEG system recognizes the
Hello, I received this email. Can you give me more details, how can I help. Thanks
Sent from my iPad
> On 15 May 2015, at 00:17, along dan <[log in to unmask]> wrote: > > I'm the mother of a 17 months old cp baby. > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
My baby is 17months old. She has no neck control ‚not sitting n has more spasticity in her arms n so does not grab nythng.I'm very worried.does anyone has ts kinda problem in ter child?.HELP ! On May 16, 2015 3:25 AM, "Katalin Szvoboda" < [log in to unmask]> wrote:
> Hello, I received this email. Can you give me more details, how can I > help. Thanks > > Sent from my iPad > > > On 15 May 2015, at 00:17, along dan <[log in to unmask]> wrote: > > > > I'm the mother of a 17 months old cp baby. > >
At 9 months i took her to d neurologist n did EEG test n MRI.which was negative. No seizure n found no anomalies. I thought things will change but she doest seems to catch up wit her milestone. Wat shuld I do ??help On May 16, 2015 6:21 AM, "Barbara Hadley" <[log in to unmask]> wrote:
Does she have a PCP? She needs to be seen again...keep pushing for her!
On Fri, May 15, 2015 at 7:54 PM, along dan <[log in to unmask]> wrote:
> At 9 months i took her to d neurologist n did EEG test n MRI.which was > negative. No seizure n found no anomalies. I thought things will change but > she doest seems to catch up wit her milestone. Wat shuld I do ??help > On May 16, 2015 6:21 AM, "Barbara Hadley" <[log in to unmask]> wrote: > > > Has she been seen by a neurologist for a diagnosis? > > > >
Sorry PCP..?didn't get u. On May 16, 2015 1:29 PM, "Sundie Randolph" <[log in to unmask]> wrote:
> Does she have a PCP? She needs to be seen again...keep pushing for her! > > On Fri, May 15, 2015 at 7:54 PM, along dan <[log in to unmask]> wrote: > > > At 9 months i took her to d neurologist n did EEG test n MRI.which was > > negative. No seizure n found no anomalies. I thought things will change > but > > she doest seems to catch up wit her milestone. Wat shuld I do ??help > > On May 16, 2015
primary care physican a regular dr who can refer you to specialists. where are you located? Maybe you could try an agency called united cerebral palsy,oin california a Regional Center which is an agency for peeople with developmental disabilities... Thanks,Tamar Raine
take her to Shriners. She needs to be in lots of therapy right now. Massage, physical therapy, etc. When my grandson was diagnosed he had apptmts all day to get him going. Some things we did probably didn't help. Does she talk at all.
On 2015-05-15 20:54, along dan wrote: > At 9 months i took her to d neurologist n did EEG test n MRI.which was > negative. No seizure n found no anomalies. I thought things will change > but > she doest seems to catch up wit her milestone. Wat shuld I do ??help > On May
Thanku.my baby does'nt talk..she rarely does laugh out loud.I do give her simple home exercises being taught to me by a PT. On May 16, 2015 7:53 PM, <[log in to unmask]> wrote:
> take her to Shriners. She needs to be in lots of therapy right now. > Massage, physical therapy, etc. When my grandson was diagnosed he had > apptmts all day to get him going. Some things we did probably didn't help. > Does she talk at all. > > On 2015-05-15 20:54, along dan wrote: > >> At 9 months i took her to d neurologist n did EEG
Get in touch with the developmental preschool in your area. It may be called something else, but get in touch with the school administration in your town. I don't know what laws India has for children with disabilities, but the school will need documentation of your daughter's disability, so if she hasn't seen a developmental pediatrician or neurologist, you could be ahead of the game if you get in touch with them.. If you haven't and you're closs to a medical school, contact the school and ask for pediatrics or developmental medicine. If you aren't close to a med school,
Thanku for ur kind advice. On May 18, 2015 9:50 PM, "Kendall Corbett" <[log in to unmask]> wrote:
> Get in touch with the developmental preschool in your area. It may be > called something else, but get in touch with the school administration in > your town. I don't know what laws India has for children with > disabilities, but the school will need documentation of your daughter's > disability, so if she hasn't seen a developmental pediatrician or > neurologist, you could be ahead of the game if you get in touch with > them.. If you haven't and you're closs
How far is orthopaedic surgery helpful in a cp child?any success story?. I'm planning for my child as she has got more spasticity in her arm. On May 16, 2015 3:25 AM, "Katalin Szvoboda" < [log in to unmask]> wrote:
> Hello, I received this email. Can you give me more details, how can I > help. Thanks > > Sent from my iPad > > > On 15 May 2015, at 00:17, along dan <[log in to unmask]> wrote: > > > > I'm the mother of a 17 months old cp baby. > > > > ----------------------- > > > > To change your
Hello, My name is Jennifer and I have a 2 and a 1/2 year old son with cerebral palsy. My son was diagnosis when he was 11 months old. We were so overwhelmed with all the possible treatments we could try for our son. Unfortunately, we found that each doctor would suggest a different treatment. We found that through talking with other parents we got the most valuable information. This sparked an interest for my master's thesis in clinical psychology looking at what treatments parents and caregivers of children with CP find most effective. My study take approximately 15 mins
Hi Jennifer, therapy never ends for us CP folks. Don't forget to ask us too. I am 59 years old, and since college have tried quite a few therapies. Thanks,Tamar Raine
This sounds great! It might also be valuable to speak with adults with CP and find out what is most helpful to them so that you are coming from an inside position. To be honest, I think yoga has done the most for me. Jen
On Thu, Apr 2, 2015 at 7:34 PM, Jennifer Miller-Farias < [log in to unmask]> wrote:
On Sat, Apr 4, 2015 at 10:02 AM, reJennifer Bartlett <[log in to unmask]> wrote:
> Jennifer, > > This sounds great! It might also be valuable to speak with adults with CP > and find out what is most helpful to them so that you are coming from an > inside position. To be honest, I think yoga has done the most for me. Jen > > On Thu, Apr 2, 2015 at 7:34 PM, Jennifer Miller-Farias < > [log in to unmask]> wrote: > > > Hello, > > My name is Jennifer and I have a 2 and a 1/2
My email accounts have been receiving spam from me. I've seen in the header listing several from here. I've made several good friends here and want to keep you as friends. Passwords have been changed. Sorry for the unwanted emails from me.
It's pretty unlikely that your actual e-mail account was hacked. Usually when this kind of thing happens the "From:" e-mail account is spoofed by a Spambot running somewhere. Robots are subscribed to lists like this, collect our addresses, and then send out e-mails that look like they are from legitimate users even though they originate from somewhere else. That's why it's always a good idea to not include machine readable versions of your e-mail in a message. If you really want people to know your e-mail use something like "mjeff at aol dot com" to tell us your e-mail. It
Looking for something to do today. If at home, watch the Starfest Telethon Live on WEAU 13 and make a donation. Want to get out and enjoy the beautiful weather, head out to Snowbiz at Winterfest on Lake Altoona,lots of great activities to watch and take part in!
I haven't liked the telethon depictions either. I no longer have a TV so I was hoping the attitude had improved but doesn't sound like it from Tamars post. Please I don't want to be required to inspire pity or admiration because of a certain set of challenges. I am not brave or courageous nor super human nor sub human. Everyone has challenges. I would like to have what I do be just that - what I do. And how I do it is just - how I do it. There are so many stories of facing incredible situations and
Now throwing my two cents in. This is why we as a society of disabled individuals can't get anywhere. We are ONLY seen as a group always to be felt sorry for. I do things that can inspire people but that is not all what I or any of us are. We live, we love, we have emotions that need to be addressed as human beings. This past Monday was the International Day of Acceptance. This was started by to recognize that we as a disabled group of humans should be treated like what we are....HUMAN. If there really is
On 1/24/2015 3:22 PM, Tamar Raine wrote: > I can't believe they still have telethons. (I don't like the way they portray people with disabilities.) > Thanks,Tamar Raine > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > It is not our differences that divide us. > It is our inability to recognize, accept, and celebrate those differences. > ~ Audre Lorde > From: Kathy Jo Pink <[log in to unmask]> > To: [log in to unmask] > Sent: Saturday, January 24, 2015 7:49 AM > Subject: UCP Tele-thon---Eau Claire, Wisconsin > > Looking for something to do today. If at home, watch the Starfest > Telethon Live on WEAU 13 and make
I watched about all of it. There was no pity. I love TeleThons and things like that.
On 1/24/2015 5:21 PM, Swami Suddhananda wrote: > I haven't liked the telethon depictions either. I no longer have a TV so I was hoping the attitude had improved but doesn't sound like it from Tamars post. Please I don't want to be required to inspire pity or admiration because of a certain set of challenges. I am not brave or courageous nor super human nor sub human. Everyone has challenges. I would like to have what I do be just that -
What was the attitude if you don't mind saying? I am glad there was no pity. At least that one is off the table.
On Sun, Jan 25, 2015 at 1:31 PM, Kathy Jo Pink <[log in to unmask]> wrote:
> I watched about all of it. There was no pity. I love TeleThons and > things like that. > > > > > > > > > > > On 1/24/2015 5:21 PM, Swami Suddhananda wrote: > >> I haven't liked the telethon depictions either. I no longer have a TV so >> I was hoping the attitude had improved but doesn't
On Sat 24 Jan 2015 21:22:59 Tamar Raine wrote: > I can't believe they still have telethons. (I don't like the way they > portray people with disabilities.) Thanks,Tamar Raine
I'm not against telethons per se, I've never seen a US version, but I think the BBC does it rather well. They have an annual "Children in Need" which focusses on UK children's charities, and an even more successful, every two years, "Comic Relief", which covers worldwide charities.
In December, my parents and I had an argument about how much money I spend, how much pop I drink in a day, and where I live. We live 2-3 hours apart . is this normal?
No, it's not normal for parents to control their 35 year old kids!Do they give you money? or do you get money from the state? certainly pop isn't good for you, but it's your body, your choice!I know that California gives only a small stipend for people living in institutions if the state pays for the nursing home/etc. Are you stilworking for the phone company? Thanks,Tamar Raine
Funny, I still have that argument with my mom all the time, and my daughter is the disabled one. Its normal for parents to worry. although your an adult and it is up to you how much you spent, what you eat and such. The amount of time I spend dealing with my little one's issues, i think it will be normal for me to worry long after she's left the nest.
Yeah, I know I have that kind of argument with my parents. I'm 33 and we still bicker about how much candy I eat and how I should exercise more. My sister, with CP, is 26 and they still insist that she not listen to her iPod at the dinner table. I think it's a pretty common parent/child thing.
My folks are both gone now I am 58, with cp-dystonia and I wish my mom could pick on me and I would say to her - thanks for being my Awesome Mom. But I could not see the big picture of all she did for me when I was in your shoes. None of us will be here forever. Sometimes the best thing is for the kid to be the more mature one in the fight. I sure wish I had one more chance to tell my mom how amazing she was. Thanks for listening. Swami.
OnYes, they give me money from the government . No. I'm not working for the phone company . Kathy Jo Pink
1/2/2015 2:39 PM, Tamar Raine wrote: > No, it's not normal for parents to control their 35 year old kids!Do they give you money? or do you get money from the state? > certainly pop isn't good for you, but it's your body, your choice!I know that California gives only a small stipend for people living > in institutions if the state pays for the nursing home/etc. Are you stilworking for the phone company? > Thanks,Tamar Raine > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I am speaking as a parent. We worry about our children no matter what age. So of course they would worry about how you spend your money and your diet. That's what parenthood is all about. Get along with them. You won't always have them. I'm sure they want to try and instill right and wrong in you to be practiced long after they are gone. Appreciate them while you can. Good Luck!
I don't thinkI have seen you here, suddhananda, are you a swami, or is your nickname sarcastic? I ask because I know there are a few swamis who take advantage of young women for sex. Thanks,Tamar Raine
Hi Tamir My name is quite real. I have been a celibate Swami since 1991. There are some shady people in every area of life it's sad but true. Thanks for asking.
All for Him•All for Good
> On Jan 4, 2015, at 2:17 AM, Tamar Raine <[log in to unmask]> wrote: > > I don't thinkI have seen you here, suddhananda, are you a swami, or is your nickname sarcastic? I ask because I know there are a few swamis who take advantage of young women for sex. > Thanks,Tamar Raine > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > It is not our differences that divide us.
Just a friendly reminder to join Evidence to Care today at 2:00 pm (EST) as we showcase the Chronic Pain Toolbox for Children with Disabilities during the Registered Nurses' Association of Ontario's Champion Webinar.
Register for free: http://rnao.ca/events/champions-webinar-17
Presenters: Taryn Orava, Ashleigh Townley, Nick Joachimides, Linda Fay
Objectives:
* Provide details on current clinical practice using the Assessment and Management of Pain Best Practice Guideline to assess acute pain within inpatient units * Describe the gap in standard practice regarding the assessment of chronic pain in outpatient units * Following the Knowledge-to-Action Cycle, describe the integrated knowledge translation strategy used
Evidence to Care at Holland Bloorview Kids Rehabilitation Hospital (Toronto, Canada), would like to formally invite you to visit www.hollandbloorview.ca/toolbox<http://www.hollandbloorview.ca/toolbox> and download the Chronic Pain Assessment Toolbox for Children with Disabilities.
This compendium of best practice resources intends to support health care professionals in their efforts to accurately identify and assess chronic pain in children with disabilities. The Toolbox is made up of four sections:
In July, we received a resident (here at Hiawaitha (the group home that I live in)). She has beeninvading my space and teasing all the time and adding to my depression
Tell the person in charge of the group home to talk to this person about how to treat other residents. Cindy Holub [log in to unmask] -----Original Message----- From: Kathy Jo Pink <[log in to unmask]> To: C-PALSY <[log in to unmask]> Sent: Sat, Nov 29, 2014 3:57 pm Subject: New Resident In July, we received a resident (here at Hiawaitha (the group home that I live in)). She has beeninvading my space and teasing all the time and adding to my depression ----------------------- To change your mail settings or leave the C-PALSY list, go here: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
On 11/29/2014 4:12 PM, Cindy Holub wrote: > Tell the person in charge of the group home to talk to this person about how to treat other residents. > > > > > Cindy Holub > [log in to unmask] > > > > > -----Original Message----- > From: Kathy Jo Pink <[log in to unmask]> > To: C-PALSY <[log in to unmask]> > Sent: Sat, Nov 29, 2014 3:57 pm > Subject: New Resident > > > In July, we received a resident (here at Hiawaitha (the group home that > I live in)). She has beeninvading my space and teasing all the time and > adding to
One area ADA wasn't too clear about: http://blog.themobilityresource.com/blog/post/accessible-taxis-a-civil-right-or-a-nice-perk Michael Jeffries [log in to unmask]
Have you ever heard of Alternative & Augmentative Communication (AAC)? Kind Regards, Kathy Pink
On 11/22/2014 3:31 PM, Saul Schleider (Renwear) wrote: > > > Hi all. > > > > My name is Saul. > > > > I have never been in contact with group of people going through similar > challenges although my wife attends a special needs mums group locally. > > > > I have a gorgeous 2 year old boy called Izzy who has C.P. I found this group > just surfing the web "I find it therapeutic"! > > > >
Have you ever heard of Alternative & Augmentative Communication (AAC)? Kind Regards, Kathy Pink
On 11/22/2014 3:31 PM, Saul Schleider (Renwear) wrote: > > > Hi all. > > > > My name is Saul. > > > > I have never been in contact with group of people going through similar > challenges although my wife attends a special needs mums group locally. > > > > I have a gorgeous 2 year old boy called Izzy who has C.P. I found this group > just surfing the web "I find it therapeutic"! > > > >
Thanks for your response. I have never heard of AAC, but will google it.
Many thanks
Saul Sent from my BlackBerry® wireless device
-----Original Message----- From: Kathy Jo Pink <[log in to unmask]> Sender: Cerebral Palsy List <[log in to unmask]> Date: Sun, 23 Nov 2014 15:49:58 To: <[log in to unmask]> Reply-To: Cerebral Palsy List <[log in to unmask]> Subject: Re: !
Hi Saul,
Have you ever heard of Alternative & Augmentative Communication (AAC)? Kind Regards, Kathy Pink
I'm so glad you wrote, If you need any help or support don't hesitate to backchannel me! Jennifer
On Sat, Nov 22, 2014 at 4:31 PM, Saul Schleider (Renwear) < [log in to unmask]> wrote:
> > > Hi all. > > > > My name is Saul. > > > > I have never been in contact with group of people going through similar > challenges although my wife attends a special needs mums group locally. > > > > I have a gorgeous 2 year old boy called Izzy who has C.P. I found this > group > just
I have a new FaceBook Account because I forgot my e-mail and password. Please use this one ONLY (until you hear differently). THIS IS NOT A SPAM! Also, please only use this e-mail address (unless I tell you differently.) KJP
I have a problem and I need help ONLY from those who understand about H. Y. 5775 This is a disability request but I need to talk directly with those so I don't cause problems at work. I need some clarity from friends. Michael Jeffries [log in to unmask]
Kathy…do you want feedback? There are many things I like, but some terms that I think get in the way of your argument.
On Mon, Oct 13, 2014 at 2:46 PM, Kathy Jo Pink <[log in to unmask]> wrote:
> > > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
On 10/13/2014 1:58 PM, reJennifer Bartlett wrote: > Kathy…do you want feedback? There are many things I like, but some terms > that I think get in the way of your argument. > > On Mon, Oct 13, 2014 at 2:46 PM, Kathy Jo Pink <[log in to unmask]> > wrote: > >> >> >> ----------------------- >> >> To change your mail settings or leave the C-PALSY list, go here: >> >> http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >> > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy Sure!
I think your speech is excellent and you are doing good work.
One thing, from my studying, I read that CP can only occur due to accident before the age of 3…I could be wrong..do you have a source for that.
Also, I tend to shy away from words like "crippler" and "suffer' from. I think when we use those words, where we mean to or not, we give folks the impression that palsy is "terrible" and that gives able people leeway to dismiss us.
I was asked given a presentation on my life's experience and Cerebral Palsy, what we would like other people to know. Any or any input would be appreciated . I don't know exactly when I'll be giving this. Kathy Jo Pink
you can’t ask for help giving you own life’s story can you?
you were born
you had struggles
you found your way around struggles for good and bad…………
and that's it
fill in the details
Sent from Windows Mail
From: Kathy Jo Pink Sent: Monday, September 29, 2014 12:58 To: [log in to unmask]
Hello All:
I was asked given a presentation on my life's experience and Cerebral Palsy, what we would like other people to know. Any or any input would be appreciated . I don't know exactly when I'll be giving this. Kathy Jo Pink
On 9/29/2014 12:05 PM, I. Weiss wrote: > excuse me > > > you can’t ask for help giving you own life’s story can you? > no! Sorry!
> > you were born > > > you had struggles > > > you found your way around struggles for good and bad………… > > > and that's it > > > fill in the details > > > > > > > Sent from Windows Mail > > > > > > From: Kathy Jo Pink > Sent: Monday, September 29, 2014 12:58 > To: [log in to unmask] > > > >
Alan Evans awarded major brain disorders prizeNews Published: 21 Aug 2014 Dr. Alan Evans, a pioneering scientist who has helped map the human brain, has been awarded the Margolese National Brain Disorders Prize by the University of British Columbia. Dr. Evans is a researcher at the Montreal Neurological Institute and the James McGill Professor of Neurology and Neurosurgery, Psychiatry and Biomedical Engineering at McGill University. Dr. Evans has redefined the role of neuroimaging by developing techniques and analytic tools that are now universally used. One of Dr. Evans’s signature achievements was creating the Montreal Neurological Institute-reference brain, the most
I live in a condo I own, I live by myself with one cat and one dog. I have helpers here about 8 hrs a day. Thanks, Tamar Raine ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. Audre Lorde ~ ________________________________ From: Kathy Jo Pink <[log in to unmask]> To: [log in to unmask] Sent: Tuesday, August 19, 2014 12:46 PM Subject: Living Arrangements What's everybodys living arrangements.? I live in a Group Home. ----------------------- To change your mail settings or leave the C-PALSY list, go here: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
From: Meir Weiss [[log in to unmask]] Sent: Tuesday, October 26, 2010 15:45 To: Meir Weiss Subject: {Neuro R Glns} SO COOL Facebook | Liddle Kidz Foundation | Infant & Pediatric Massage Follow Up Flag: Follow up Flag Status: Flagged
I'm not sure if this has been shared before, but it seems like a useful site. http://vkc.mc.vanderbilt.edu/etoolkit/ Basically it gives a guide on what questions to ask and what information to give to healthcare providers (once we find them!). Take care, Harleen
On 8/17/2014 9:51 AM, Harleen Singh wrote: > Hi All, > > I'm not sure if this has been shared before, but it seems like a useful > site. > http://vkc.mc.vanderbilt.edu/etoolkit/ > Basically it gives a guide on what questions to ask and what information to > give to healthcare providers (once we find them!). > Take care, > Harleen > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy Hi Harleen and All,
On Mon, Aug 18, 2014 at 10:29 AM, Kathy Jo Pink <[log in to unmask]> wrote:
> On 8/17/2014 9:51 AM, Harleen Singh wrote: > >> Hi All, >> >> I'm not sure if this has been shared before, but it seems like a useful >> site. >> http://vkc.mc.vanderbilt.edu/etoolkit/ >> Basically it gives a guide on what questions to ask and what information >> to >> give to healthcare providers (once we find them!). >> Take care, >> Harleen >> >> ----------------------- >> >> To change your mail settings or leave the C-PALSY list, go here: >>
Tightness pain is. On Tuesday, May 6, 2014 1:42 PM, Kathy Jo Pink <[log in to unmask]> wrote: is pain associated with Cerebral Palsy? ----------------------- To change your mail settings or leave the C-PALSY list, go here: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
YES! due to very tight muscles, AND due to abnormal movement our joints and spine take a beating!!! It can cause scoliosis and lordosis which are curvatures in different directions. also sitting all the time can hurt our butt, low back... all kinds of pain! Thanks, Tamar Raine ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. Audre Lorde ~ ________________________________ From: Kathy Jo Pink <[log in to unmask]> To: [log in to unmask] Sent: Tuesday, May 6, 2014 10:42 AM Subject: Pain? is pain associated with Cerebral Palsy?
I didn'tthink it did before but as I age, I realize it does. I have always been a very active "walker." What I get is a series of rotating mild to pronounced aches and pains. They largely manifest in my limbs, feet, and stomach. I wake a lot with pain at night.
I have a premenatly dislocated left need either from my gait or an accident in PE 30 years ago. Often, I have no pain in the knee at all, but sometimes it is excoriating. I get a lot, a lot of cramping in my feet. But again, I
Jennifer, Like you, I walked, with a scissor gait... at about 34, I began to have the most EXCURCIATING pain in my legs! It was more than a 10 on a pain scale, truly off the charts. My leg muscles felt so tight it was all I could do not to scream. I saw a spasticity specialist and we went through trying many different meds. I had been taking feldenkrais lessons since I was 24, and they really helped me a lot, it is a very gentle therapy that retrains your brain to move in easier ways. But this pain
Pain With CP Yes! I have tried all pain meds - am going with Excedrin right now, others too dopey making and Baclophen did not work for me. Yoga, meditation and breathing exercises a must. Activity, contentment, and rest also requirements. BUT Most impactful thing I have done (last 2 weeks) is L-dopa 10-100, 2 per day. It is dopamine. Spasticity down by 90 percent. No kidding!
Kathy Jo, I got a baclofen pump two years ago (almost exactly) and the surgery was quick, relatively pain free, and the pump has worked well for me. My doctor kept me in the hospital for a week afterward to do some in-patient rehab, which was really good for me, because I had to re-learn some transfer methods, since I'd been depending on my spasticity to do some of them. Like you, the test dose worked really well; I was able to open my left hand farther than I'd been able to in years.
Hi Kathy, That is great news. The surgery is fairly simple. they put a very thin tube, ( think angel hair pasta) in your spine, so that baclofen can drip into your spinal fluid, -- the container goes into a pocket of your skin usually in the region of your belly. It does not go into the stomach itself. This way they can refill it by inserting a needle through the skin into the container. You will feel a slight prick, but it the sting goes away quickly. Thanks, Tamar Raine ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide
I'm having it done next Monday, March tenth in Lacrosse, Wisconsin, U.S.A..
Kathy Jo Pink
> Date: Fri, 28 Feb 2014 14:02:09 -0800 > From: [log in to unmask] > Subject: Re: Bacofen Surgery > To: [log in to unmask] > > Hi Kathy, > That is great news. > The surgery is fairly simple. they put a very thin tube, ( think angel hair pasta) > in your spine, so that baclofen can drip into your spinal fluid, -- > the container goes into a pocket of your skin usually in
AFTER THE REPLACEMENT 2 months ago, i just went home. but the first time was about a week, because they have to monitor it carefully to make sure it works, and that you don't have any bad effects, and to get the right dose. Thanks, Tamar Raine ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. Audre Lorde ~ ________________________________ From: Kathy Jo Pink <[log in to unmask]> To: [log in to unmask] Sent: Saturday, March 1, 2014 10:34 AM Subject: Re: Bacofen Surgery Hi Tamar, Kendall, And All, :) Tamar, How long were
need more info before can even think about it, where are the sevices delivered, how long, what type of services (sensory, hand skills, etc), general diagnosis, duration of services (school year?) thank you for taking these questions susan
-----Original Message----- From: Meir Weiss <[log in to unmask]> To: C-PALSY <[log in to unmask]> Sent: Thu, Feb 27, 2014 1:55 pm Subject: http://www.cija.ca/centre-publications/media/word-from-our-chair-legislation-to-safeguard-against-genetic-discrimination/
need more info before can even think about it, where are the sevices delivered, how long, what type of services (sensory, hand skills, etc), general diagnosis, duration of services (school year?) thank you for taking these questions susan
-----Original Message----- From: susan donohoe <[log in to unmask]> To: C-PALSY <[log in to unmask]> Sent: Thu, Feb 27, 2014 3:20 pm Subject: Re: http://www.cija.ca/centre-publications/media/word-from-our-chair-legislation-to-safeguard-against-genetic-discrimination/
-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Meir Weiss Sent: Wednesday, January 08, 2014 9:04 AM To: [log in to unmask] Subject: http://www.humanconnectome.org/
From: Barbara Hadley Sent: Wednesday, January 8, 2014 15:23 To: [log in to unmask]
Yahoo news has a video about this project.
-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Meir Weiss Sent: Wednesday, January 08, 2014 9:04 AM To: [log in to unmask] Subject: http://www.humanconnectome.org/
Sorry, it took me a few mins to find my way back there.
-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Meir Weiss Sent: Wednesday, January 08, 2014 3:50 PM To: [log in to unmask] Subject: Re: http://www.humanconnectome.org/
post the link
Sent from Windows Mail 8.1
From: Barbara Hadley Sent: Wednesday, January 8, 2014 15:23 To: [log in to unmask]
Sorry, it took me a few mins to find my way back there.
-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Meir Weiss Sent: Wednesday, January 08, 2014 3:50 PM To: [log in to unmask] Subject: Re: http://www.humanconnectome.org/
I am new to the list serv. I am a poet with cerebral palsy from Brooklyn New York. I am seeking out people who both have CP and are associated with others. I am trying to bring attention to a project I have been working on for four years, the biography of the poet Larry Eigner. Eigner has severe CP, and lived with his parents most of his life (1927-1996). During this time he highly influenced poetry and society in general. Attached in a link to the kickstarter video for the project. I am not looking for money,
Baclofen is a muscle relaxant, and is used for CP as well as other conditions that cause spasticity. Thanks, Tamar Raine ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. Audre Lorde~ On Monday, October 28, 2013 4:22 PM, Kathy Jo Pink <[log in to unmask]> wrote: Does anybody know if Bacofen is a CP thing? ----------------------- To change your mail settings or leave the C-PALSY list, go here: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
I'm sure they use it for other conditions that create spastic muscles. CP is not the only condition that creates spasticity.
Kat
On Mon, Oct 28, 2013 at 7:22 PM, Kathy Jo Pink <[log in to unmask]>wrote:
> Does anybody know if Bacofen is a CP thing? > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
> Date: Mon, 28 Oct 2013 18:22:34 -0500 > From: [log in to unmask] > Subject: Bacofen > To: [log in to unmask] > > Does anybody know if Bacofen is a CP thing? > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
Here is a wonderful site that gives credible systematic reviews for different interventions: http://www.aacpdm.org/publications/outcome . As a disclosure, I am a member of this association. Take care, Greta
On Tue, Oct 29, 2013 at 8:31 AM, Kathy Jo Pink <[log in to unmask]>wrote:
> Is this a fairly new thing? Thanks! =20 > =20 > =20 > =20 > =20 > =20 > =20 > =20 > =20 > =20 > > =20 > > Date: Mon=2C 28 Oct 2013 18:22:34 -0500 > > From: [log in to unmask] > > Subject: Bacofen > > To: [log in to unmask] > >=20 > > Does anybody know if Bacofen
On Tue, Oct 29, 2013 at 8:31 AM, Kathy Jo Pink <[log in to unmask]>wrote:
> Is this a fairly new thing? Thanks! > > > > > > > > > > > > > Date: Mon, 28 Oct 2013 18:22:34 -0500 > > From: [log in to unmask] > > Subject: Bacofen > > To: [log in to unmask] > > > > Does anybody know if Bacofen is a CP thing? > > ----------------------- > > > > To change your mail settings or leave the C-PALSY list, go here: > > > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
It's a good general anti-spasticity drug. It's used for people with MS, CP, spinal cord injuries, stroke and other neurological disabilities that cause spasticity. It's been around since at least 1983. A friend was in a car accident in 1983, and baclofen (lioresal) was the first drug that he got for his spasms. It was fairly new then, because it hadn't become available as a generic.
Baclofen pumps (intrathecal baclofen) deliver the drug directly into the spinal fluid, which also circulates through the brain. Pumps have been around for at least 20 years, because the surgeon that put mine in last year was doing research on them in his residency and fellowship training (1992 - 2003). Janet got her first pump in 2006, and had it replaced last year. The predicted life of the pump is 5 years.
The best person to discuss all this, Kathy Jo, is with your doctor. Each case is different and he or she knows best how well it'd work, and if it's the best option for you.
In my case, my neurologist and my orthopaedist both told me am not spastic enough for the pump. So it's not an option for me. Also, the type of spasticity is a factor in the success of the treatment.
Kathy Jo, I have had mine for 7 years, it is positened to help the tightness of my low back and legs, and it has been very, very helpful! I had EXTEME pain and tightness in my legs, now part of that was also my worn-to-bits hips, but we didn't know that at that time. After my pump was installed and turned on, I slept like I had not in years, and my pain went down about 50 to 60 percent. Depending on which size pump you get, you'll need to go to have a refill every3 months or every
> Date: Sat, 26 Oct 2013 20:17:52 -0700 > From: [log in to unmask] > Subject: Re: Bacofen Pump > To: [log in to unmask] > > Kathy Jo, > I have had mine for 7 years, it is positened to help the tightness of my low back and legs, and it has been very, very helpful! I had EXTEME pain and tightness in my legs, now part of that was also my worn-to-bits hips, but we didn't know that at that time. After my pump was installed and turned on, I slept like I had not
I know you're gonna hate this answer, but it depends.
If you overuse weak joints when you are younger, then yes. My dad walked for years with crutches and leg braces. Finally his rotator cuffs just wore out. Now he's in a zippy electric chair (70 yrs old).
The paper here (Chattanooga Times Free Press) just had an article about a man with CP in a similar situation. He can no longer (at 50) do the things he used to do.
There's no one definitive answer, Kathy Jo. It depends on the person and how active they can be.
Kat
On Mon, Oct 7, 2013 at 10:39 AM, Kathy Jo Pink <[log in to unmask]>wrote:
> I know we talked in depth about this before,,, but, does Cerebral Palsy > get worse with age? > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
KJ, Are there specific issues that are becoming more difficult? If so, let us know what they are, and I'm pretty sure someone has encountered something at least similar. If it's something you'd rather not discuss with the whole list, I bet there are people who'd discuss them off-list, I'd be glad to, but there are likely some issues that I have no idea about that Virginia, Carla or Kat will be better at answering than me. If I can help and you feel uncomfortable asking about a specific issue on-list, send me a private e-mail.
1) Please change the subject if you change the subject!
2) What about CP would you like to know, Maiss?
Thanks, Kat List Mod
On Tue, Oct 1, 2013 at 7:25 PM, Maiss Abu Ghosh <[log in to unmask]>wrote:
> yes > > > Date: Tue, 1 Oct 2013 18:04:20 -0500 > > From: [log in to unmask] > > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation > (Video) - The Hollywood Reporter > > To: [log in to unmask] > > > > aBOUT cEREBRAL pALSY. ? > > >
-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of beth.hunsberger Sent: Monday, September 30, 2013 19:02 To: [log in to unmask] Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter
About?
Sent from my T-Mobile 4G LTE Device
-------- Original message -------- From: Kathy Jo Pink <[log in to unmask]> Date: 09/30/2013 5:45 PM (GMT-06:00) To: [log in to unmask] Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter
hi how are you? id like to learn more about Cerbal palsey
> Date: Mon, 30 Sep 2013 07:54:05 -0400 > From: [log in to unmask] > Subject: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > To: [log in to unmask] > > http://www.hollywoodreporter.com/news/avril-lavigne-launches-crowdfunding-ca > mpaign-625957 > > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
> Date: Mon, 30 Sep 2013 09:11:01 -0400 > From: [log in to unmask] > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > To: [log in to unmask] > > hi how are you? id like to learn more about Cerbal palsey > > > Date: Mon, 30 Sep 2013 07:54:05 -0400 > > From: [log in to unmask] > > Subject: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > > To: [log in to unmask] > > > > http://www.hollywoodreporter.com/news/avril-lavigne-launches-crowdfunding-ca > > mpaign-625957 > > > > ----------------------- > > > > To
About? Sent from my T-Mobile 4G LTE Device -------- Original message -------- From: Kathy Jo Pink <[log in to unmask]> Date: 09/30/2013 5:45 PM (GMT-06:00) To: [log in to unmask] Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter What would you like to know? > Date: Mon, 30 Sep 2013 09:11:01 -0400 > From: [log in to unmask] > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > To: [log in to unmask] > > hi how are you? id like to learn more about Cerbal palsey > > > Date: Mon, 30 Sep 2013 07:54:05 -0400 > > From:
> Date: Mon, 30 Sep 2013 18:02:04 -0500 > From: [log in to unmask] > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > To: [log in to unmask] > > About? > > > Sent from my T-Mobile 4G LTE Device > > -------- Original message -------- > From: Kathy Jo Pink <[log in to unmask]> > Date: 09/30/2013 5:45 PM (GMT-06:00) > To: [log in to unmask] > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > > What would you like to know? > > > > > > > > > >
> Date: Tue, 1 Oct 2013 18:04:20 -0500 > From: [log in to unmask] > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > To: [log in to unmask] > > aBOUT cEREBRAL pALSY. ? > > > > > > > > > > > > > > > Date: Mon, 30 Sep 2013 18:02:04 -0500 > > From: [log in to unmask] > > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > > To: [log in to unmask] > > > > About? > > > > > > Sent from my T-Mobile 4G LTE Device
What about Cerebral Palsy do you want to know about?
> Date: Tue, 1 Oct 2013 19:25:02 -0400 > From: [log in to unmask] > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > To: [log in to unmask] > > yes > > > Date: Tue, 1 Oct 2013 18:04:20 -0500 > > From: [log in to unmask] > > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation (Video) - The Hollywood Reporter > > To: [log in to unmask] > > > > aBOUT cEREBRAL pALSY. ? > > > > > > > > > > > > > > > >
How do children with CP make friends with typical kids?
On Wed, Oct 2, 2013 at 9:26 AM, Kathy Jo Pink <[log in to unmask]>wrote:
> What about Cerebral Palsy do you want to know about? > > > > > > > > > > > > > Date: Tue, 1 Oct 2013 19:25:02 -0400 > > From: [log in to unmask] > > Subject: Re: Avril Lavigne Launches Crowdfunding Campaign for Foundation > (Video) - The Hollywood Reporter > > To: [log in to unmask] > > > > yes > > > > > Date: Tue, 1 Oct 2013 18:04:20 -0500 > > > From: [log in to unmask]
"How do children with CP make friends with typical kids?"
Pretty much the same way as any other kid (or adult). Find they have common interests, start a conversation, or join a shared activity. Sometimes a kid with CP will make friends with a "typical kid" if they share similar obstacles. My best friend in grade school (grades 1 - 6, if you're not from the US) was also picked on by more "typical kids." His issue was being smarter than everyone else. When he was in high school he realized he was gay, so that was likely part of
My child has a speech difficulty, but loves to hang with people
On Wed, Oct 2, 2013 at 11:41 AM, Kendall Corbett <[log in to unmask]>wrote:
> "How do children with CP make friends with typical kids?" > > Pretty much the same way as any other kid (or adult). Find they have > common interests, start a conversation, or join a shared activity. > Sometimes a kid with CP will make friends with a "typical kid" if they > share similar obstacles. My best friend in grade school (grades 1 - 6, if > you're not from the US) was also picked
I am hearing-impaired and let people know so that if I don't understand what they say, they will repeat it for me and vice versa. Communication is a two-way street.
I hung around with kids who were kind and accepting of me. In fact now I don't know anyone who is disabled with CP aside from this list and FB. It's just the way my life is now.
My wife has speech difficulties, and when she was a kid, she gravitated toward people who dealt well with it. I think we all do that to an extent, whatever our difference might be. Janet came from a small town (3-5K) in Iowa, so everyone knew everyone else which helped. We al "come from" smaller communities even if we live in a large city - we know the people we go to school, work, and other activities with. Some in that community may be more accepting than others, As Jeff and I found, there may be a few who are
People with speech problems from CP probably constitute most of the users of a nationwide, FCC mandated telephone assistance service called Speech-to-Speech (See www.speechtospeech.org). The FCC is requesting input from the public on rules changing to improve the service. I have prepared a set of talking points for those who want to file comments which are due 9/16, with additional time if needed. Please email at [log in to unmask] me for a copy of the talking points and other information.
One of my problems growing up with CP is that I did not know any successful adults with CP. I attempted to solve the problem for the next generation, so when you mentioned Facebook, it reminded me to list about a Facebook called Doc- Cerebral Palsy. This is a group of people with Cerebral Palsy who have MDs, PhDs, or other doctorates. If one happens to live close to you and you have someone in your family with CP, you might introduce them to each other.
All people, with disabilities, should be encouraged to earn their high school diplomas and college degrees. They also should apply for gainful employment. I am a role model, not an inspiration. Click on my new web site https://sites.google.com/site/professoryvonnesinger/ and read about my journey.
PYS
-----Original Message----- From: Dr. Bob Sent: Saturday, August 31, 2013 1:17 AM Newsgroups: bit.listserv.c-palsy To: [log in to unmask] Subject: role models for young people with CP on Facebook
I don't know about you guys. But, I don't understand all of this social media . I can understand FaceBook pretty much. I don't get LinkedIn and Twitter.
I don't use Twitter (all the short tweets bore me) but it's a social media where people can message in short bursts. LinkedIn is mainly for people who want to connect via occupational networks.
Kat
On Fri, Aug 30, 2013 at 11:01 AM, Kathy Jo Pink <[log in to unmask]>wrote:
> I don't know about you guys. But, I don't understand all of this social > media . I can understand FaceBook pretty much. I don't get LinkedIn and > Twitter. > ----------------------- > > To change your mail settings or leave the C-PALSY list, go here: > > http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy >
Kathy Jo, I use LinkedIn, and I've been able to connect with, and pick the brains of, people involved in disability rights activities throughout the US, and as far away as Pakistan. I don't use Twitter, as 140 characters is really limiting.
On Fri, Aug 30, 2013 at 10:13 AM, Kathleen Salkin <[log in to unmask]>wrote:
> I don't use Twitter (all the short tweets bore me) but it's a social media > where people can message in short bursts. LinkedIn is mainly for people > who want to connect via occupational networks. > > Kat > > > On Fri, Aug 30,
I don't use twitter because i don't have a cell phone and I prefer seeing everything on my large computer screen. I'm not interested in linked in because i'm not active in a professional trade. The thing I don't get is pinit.. I don't like having ads from places i have shopped display on every site i go. Thanks, Tamar ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. ~ Audre Lorde ________________________________ From: Kathleen Salkin <[log in to unmask]> To: [log in to unmask] Sent: Friday, August 30, 2013 9:13 AM Subject: Re:
Hi Kathy, I never did really understand it either, but this is as far as I got. LinkedIn is basically Facebook for employers/employees. Twitter looks like the Facebook newsfeed only, with no other info about you except the name you use. ~Harleen
On Fri, Aug 30, 2013 at 11:01 AM, Kathy Jo Pink <[log in to unmask]>wrote:
> I don't know about you guys. But, I don't understand all of this social > media . I can understand FaceBook pretty much. I don't get LinkedIn and > Twitter. > ----------------------- > > To change your mail settings or leave the C-PALSY list, go
I would suggest just signing up with one or two and sticking to those. Any more and you'd go nuts trying to keep up with everyone. Just my opinion.
Kat
On Sun, Sep 1, 2013 at 12:13 PM, Harleen Singh <[log in to unmask]>wrote:
> Hi Kathy, I never did really understand it either, but this is as far as I > got. LinkedIn is basically Facebook for employers/employees. Twitter looks > like the Facebook newsfeed only, with no other info about you except the > name you use. ~Harleen > > On Fri, Aug 30, 2013 at 11:01 AM, Kathy Jo Pink
I agree. I see the exact same group on everything out there. Even with the problems with the Facebook apps. There is some good to it. Twitter is mainly for those with tablets and smartphones. I stick with an old style flip phone. I don't need all those bells and whistles with the smartphone generation.
I am told that because of significant athetosis, I would not be able keep a lower denture in place. As my lower teeth are wearing out, I am told that my only choice is to have implants with an over bridge at a cost of 30K. Is there anyone out there with significant athetosis who is using a lower denture successfully?
Bob, what's an over-bridge? Thanks, Tamar ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. ~ Audre Lorde ________________________________ From: Bob Segalman <[log in to unmask]> To: [log in to unmask] Sent: Friday, August 23, 2013 10:35 PM Subject: lower denture I am told that because of significant athetosis, I would not be able keep a lower denture in place. As my lower teeth are wearing out, I am told that my only choice is to have implants with an over bridge at a cost of 30K. Is there anyone out there with significant
I was born with Cerebral Palsy. I can't join Special Olympics because I don't have a cognitive disability or delay , Has this ever happened to anyone on this list before?
Yes, Kathy - Amber wasn't allowed to do Special Olympics either as a child - only for kids with cognitive disabilities. It sucks and I no longer support them.
-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Kathy Jo Pink Sent: Friday, August 23, 2013 11:21 AM To: [log in to unmask] Subject: Special O.
I was born with Cerebral Palsy. I can't join Special Olympics because I do= n't have a cognitive disability or delay =2C Has this ever happened to anyo= ne on this list before? =
I have a child with Down syndrome and cp. it is my understanding that it is the para Olympians who are pushing the division between cognitive disability and physical. Did either of you ever try participating in para Olympics? Anu
On Aug 23, 2013, at 8:27 AM, Trisha Cummings <[log in to unmask]> wrote:
> Yes, Kathy - Amber wasn't allowed to do Special Olympics either as a child - only for kids with cognitive disabilities. It sucks and I no longer support them. > > -----Original Message----- > From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Kathy Jo Pink > Sent: Friday,
My Amber is now 27 and was a founder of the Virginia Commonwealth University Quidditch Team, as well a local Richmond Community Quidditch team and is the VA state rep for Virginia in the International Quidditch Association. When I inquired it was eons ago - I was told she didn't qualify and was given no options. My thought is there should be one organization and all special needs kids would be eligible and actives would be according to their abilities. No Child left Behind - so to speak- lol
On Friday 23 Aug 2013 17:53:52 Trisha Cummings wrote: > Hi Anu, > > My Amber is now 27 and was a founder of the Virginia Commonwealth > University Quidditch Team, as well a local Richmond Community Quidditch > team and is the VA state rep for Virginia in the International Quidditch > Association. When I inquired it was eons ago - I was told she didn't > qualify and was given no options. My thought is there should be one > organization and all special needs kids would be eligible and actives would > be according to their abilities.
kathy, there are CP sports teams in some areas. Have you tried finding those? Trisha, what is quidditch? I thought it was a made-up game from harry potter? ;-> Thanks, Tamar ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. ~ Audre Lorde ________________________________ From: Trisha Cummings <[log in to unmask]> To: [log in to unmask] Sent: Friday, August 23, 2013 10:53 AM Subject: Re: Special O. Hi Anu, My Amber is now 27 and was a founder of the Virginia Commonwealth University Quidditch Team, as well a local Richmond Community Quidditch team
I have a hard time with the PO Like oscar p. who partipated in both reg olympic and paraolympics. if he can do regular o. he should not be allowed to do PO. why did they permit that? Thanks, Tamar ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ It is not our differences that divide us. It is our inability to recognize, accept, and celebrate those differences. ~ Audre Lorde ________________________________ From: Anu <[log in to unmask]> To: [log in to unmask] Sent: Friday, August 23, 2013 10:02 AM Subject: Re: Special O. I have a child with Down syndrome and cp. it is my understanding that it is the para Olympians
It's one thing to go from Paralympics to regular Olympics. It's quite another to bounce back and forth. I remembered a website for CP but the website domain is now up for sale. It was the United States Cerebral Palsy Athletic Association.
I was allowed to do Special Olympics ready I was in High School.
> Date: Fri, 23 Aug 2013 15:27:00 +0000 > From: [log in to unmask] > Subject: Re: Special O. > To: [log in to unmask] > > Yes, Kathy - Amber wasn't allowed to do Special Olympics either as a child - only for kids with cognitive disabilities. It sucks and I no longer support them. > > -----Original Message----- > From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Kathy Jo Pink > Sent: Friday, August 23, 2013 11:21 AM > To: [log in to unmask] > Subject: Special O. > > I was born with
> Date: Fri, 23 Aug 2013 12:59:21 -0700 > From: [log in to unmask] > Subject: Re: Special O. > To: [log in to unmask] > > kathy, there are CP sports teams in some areas. Have you tried finding those? > > Trisha, what is quidditch? I thought it was a made-up game from harry potter? ;-> > > > > Thanks, > Tamar > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > It is not our differences that divide us. > It is our inability to recognize, accept, and celebrate those differences. > ~ Audre Lorde > > > ________________________________ > From: Trisha Cummings
Sodium (the major chemical component in table salt) has the potential to significantly alter brain activity. Scientists at McGill University found that sodium can switch an important receptor on and off. The receptor--known as a kainate receptor--is important for brain functions and alterations in kainate activity have been linked to neurological disorders like epilepsy. In new research published in Nature Structural & Molecular Biology, the researchers found that sodium binds to an alternate site on the kainate receptor and controls the receptors ability to bind to its normal ligand. This binding site appears to be unique to kainate
Meir is the only one posting right now. It seems fair to awaken the masses with this question: Do you feel it's fair for Hollywood to use only nondisabled actors/actresses for disabled roles? Can we as disabled people be taken seriously instead of the special of the week? Does anyone remember a cable station for the disabled? I'm just throwing out ideas to get your minds brainstorming.
If you're speaking of the character in the popular tv series, Glee, it's been reported that persons with disability were auditioned for various roles. Remember, the characters have to be able to sing, dance, or both. They did have a story arc featuring a young woman with disability. She won a spot during her run on the Glee Project which showcased a group of young people vying for story arcs on the series.
On Saturday 17 Aug 2013 14:31:08 Michael Jeffries wrote: > Meir is the only one posting right now. It seems fair to awaken the masses > with this question: Do you feel it's fair for Hollywood to use only > nondisabled actors/actresses for disabled roles? Can we as disabled > people be taken seriously instead of the special of the week? Does anyone > remember a cable station for the disabled? I'm just throwing out ideas to > get your minds brainstorming. > > Michael Jeffries > [log in to unmask] >
Thank you Carla for your input. I may be one of a few out here that would like seeing more disabled people in regular shows. Some shows tend to be too perfect, like a cookie cutter type mentality. If anything throwing in a curveball in some comedies or dramas with reoccurring roles but more than two a season.
No Deri. If it's British, it's probably on BBC America. I don't have cable but I'll check with some friends who have cable.
Do you get a program called "I'm Spazticus" in the US. It's a comedy sketch show? It's rather British humour but almost all the actors are disabled. www.channel4.com/programmes/im-spazticusCheersDeri-----------------------To change your mail settings or leave the C-PALSY list, go here:http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=c-palsy
On Saturday 17 Aug 2013 17:23:23 Michael Jeffries wrote: > No Deri. If it's British, it's probably on BBC America. I don't have cable > but I'll check with some friends who have cable. > > It's not a BBC show, Channel 4 has a public service charter (like the BBC has) but is allowed to show adverts, which the BBC is not allowed to do.
There are several actors with Down syndrome. Frankly, I do wish to see more people with various disabilities and I'd rather see people with is abilities in roles that portrays People with disabilities. There is a show called Switched at Birth in ABC Family, that not only has deaf people acting but also has lots of sign language incorporated I to the show.
We can get British shows online via Netflix, Hulu, or Acorn TV, or possibly YouTube but I have never seen that show. I do watch a lot of British shows online and on my TV via Roku (a streaming device), however the BBC or ITV, it ain't. I don't think there's a big market for comedy shows featuring actors with disabilities - the last one I recall in the US was the one with Jeri Jewell in it. :(
Check out Push Girls - available through streaming on Netflix. Lets talk where the rubber meets the road - able-bodied actors and actresses go through all kinds of machinations to look the way they do...if folks with visible physical challenges can put on the same type of appearance, it looks like there are doors that can be kicked open with persistence, a thick skin, heavy duty protective pump heels and a solid footplate on one's wheelchair. (Just teasing about the shoes and footplate.) I love what Ed Roberts decided - "People are gonna stare so I decided I am a
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-----Original Message----- From: Cerebral Palsy List [mailto:[log in to unmask]] On Behalf Of Kathy Jo Pink Sent: Tuesday, July 30, 2013 11:55 AM To: [log in to unmask] Subject: Support, Please
