Tag Archives: cerebral palsy

#CPChatNow Recap- 02-22-2023

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It’s #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. This week members discussed heating pads, mattresses, and what they would tell to their younger self.

First, Zach and I talked about a fantastic book we have been reading, True Biz. I highly encourage you to check it out!

zach asks how i'm liking true biz, i respond i like it and i'm halfway through, zach tweets he plans to write a review for his blog and there are some parallels to CP and the book finds a balance between being educational and entertaining.

Next, I asked if members had recommendations for heating pads.

i asked if anyone had recommendations for a heating pad, heather tweets she uses therapearl hot and cold packs on her shoulder joint and she has had botox done today

Also, Hannah asked for recommendations for mattresses.

hannah asks if anyone with CP have recommendations for a good mattress. Heather tweets the firmest one possible with softness impacting her shoulder and hip. She said she uses a Kingsdown rampart. Veronica also prefers a firm mattress and she has a firm tempurpedic.

Finally, talk turned to what members would tell their younger self about CP.

zach asks what members would tell their younger self about CP. Timmy tweets to be unapologetically you because it's your life not theirs
chris tweeted she would say it's ok to be disabled and her disabled body is normal for her and there's nothing wrong with it. she was berated for her spastic arm in the past. zach tweets we are all different in some way so normal is a myth. chris tweeted it took a lot of spending time with disabled people for her to be comfortable in her body. she notes she had to stop herself from yelling at a friend to put his arm down.

This brings us to our Extend-The-Conversation Question: What are some myths you were told about CP when you were young?

Thanks for reading and please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow!

-Devin

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#CPChatNow Recap- 2/8/2023

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This is #CPChatNow co-host, Devin Axtman, checking in once again for this week’s recap. Members got nostalgic this week talking about what they missed from childhood while contrasting that by discussing what they liked about adulthood. All aboard!

Members opened the week’s chat by discussing what they missed from childhood. Members talked about being carefree, being able to be carried around, and more!

zach asked what members missed most from their childhood/teenage years, i tweeted about being care free and having less responsibility, zach missed simpler times but talked about how that might be due to blissful ignorance, hannah tweeted having both of her parents and being small enough to be carried around.
alessandro answered he misses a back that doesn't hurt, zach tweeted he just turned on the heating pad for his back and his misses being able to bend down without grunting. alessandro added his misses not hearing a crack or pop.
timmy tweets about missing being able to eat whatever he wants without gaining weight

Finally, members discussed what they liked most about adulthood, namely the ability to take chances and money to go do stuff.

zach asks what members like most about adulthood and tweeted he likes not having to get permission to do things the most and used the example of becoming a marathoner, i tweeted having money to go do fun stuff

This brings to our Extend-The-Conversation Question: What is your favorite memory from childhood? Please share your answers in the comments and please join us each Wednesday at 8 Eastern on Twitter at #CPChatNow!

-Devin

#CPChatNow Recap- 1/18/23

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This past week’s #CPChatNow had members bouncing all over the place with discussions of different topics such as hiking, podcasts, and how CP impacts their decision making. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I would like to celebrate Zach progressing in his career at the library.

zach tweets he finished his branch service assistant training and he can now substitute at the reference desk

Next, talk turned to Timmy’s hobby of hiking and his essentials when he goes on a hike.

zach asks timmy what equipment he takes on his hikes. timmy says he has a 24 pound backpack with micro spikes, trekking poles, satellite personal locator device along with gummy bears

Next, Stephen asked what podcasts others listened to.

Stephen asks if people are fans of podcasts, i tweet i am fans of way too many with my favorite small town murder and wrestling and sports ones. Stephen tweets he likes on air with ryan seacrest and the ellen k morning show and zach tweets he listens to one or two, but he is a visual person so he mainly falls asleep to them.

Finally, Zach asks members how CP impacts their decision making.

zach asks how cp impacts members decision making. i tweeted about transportation or if i'm going somewhere and need to walk a lot. zach tweets about cp helping determine priorities with the first one being to take care of himself physically and prioritizing that guides decision making on what to do first.

This brings us to our Extend-The-Conversation Question: What are your favorite outdoor activities? Please share your answers in the comments and join us tomorrow at 8 Eastern on Twitter at #CPChatNow!

the extend-the-conversation question graphic with the question of what are your favorite outdoor activities with a a brown sign and an illustration of two figures hiking.

#CPChatNow Recap- 1/4/23

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This past week in #CPChatNow sparked some interesting conversation about member’s relationship with CP and their hopes for 2023. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach tweeted about a dream where he avoided a common nemesis for people with CP, escalators.

zach tweets about a dream where he was at the mall and avoided taking an escalator. I tweeted I usually realize I should've done something different but it's too late

Next, Zach asked what members are looking forward to in 2023.

zach asked what members are looking forward to in 2023. zach tweeted he is starting to train as a substitute at the reference desk and writing wise he has different events coming up.
veronica tweeted she is not sure she is looking forward to it, but she is turning 50 in November. chris tweeted she is hoping to finish her masters.

Finally, Zach asked about member’s relationships with CP. The question sparked an interesting discussion.

zach asks members to describe their relationship with CP. i tweeted adaptable with some days taking pride in my CP, some days annoyed by it and some days indifferent. chris tweeted mostly ok learning to adapt well with the only impacts coming from post impairment syndrome aging things.
timmy tweets accepted. he accepts it to the point he can push himself physically but it in reality it's really about how far mentally

This brings us to our Extend-The-Conversation Question: Have you ever had a dream related to CP? Please share your answers in the comments.

Thanks for reading!

-Devin

#CPChatNow Recap- 12/21/2022

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This past week in #CPChatNow not surprisingly centered around the holidays with members discussing favorite holiday movies and memories. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Members started the chat by talking about their favorite Christmas movies and music:

i ask what members favorite Christmas movie is and shared mine is christmas vacation with a picture of the Griswold house
zach tweets his favorite movie is the santa clause. i tweeted i watched that today. zach asks if people have a favorite christmas album and tweets his is the christmas album by neil diamond. i tweeted my favorite song is the christmas song by nat king cole. chris tweeted that is his as well.

Next, Zach asked about member’s favorite holiday memories. We reminisced about favorite memories with Santa Claus.

zach asked about fun holiday memories. i tweeted about how my family hired a santa claus zach tweeted about how dad played santa one christmas eve.
seth tweeted about the time he told santa he had bad breath. zach asked how he reacted. seth said he really couldn't react.

This brings us to our Extend-The-Conversation-Question: What is your funniest holiday memory?

Extend-the-conversation graphic with #CPChatNow logo in upper right hand corner, what is your funniest holiday memory? and picture of christmas trees and a hanukkah menorah

My funniest holiday memory is asking Santa where his sleigh was parked at the bank. He pointed to the roof and I was straining desperately to see it. Please share your answers in the comments!

Thanks for reading and join us each Wednesday at 8 Eastern on #CPChatNow!

-Devin

#CPChatNow Recap- 12/7/22

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This past week in #CPChatNow was hopping as always. Members talked about the cold, falling and the difficulty of getting up with age, and what they want for Christmas. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I would like to highlight a cool thing the library Zach works at did, showcase his book Slow and Cerebral!

an image of zach posting in front of copies of his book at his library

A common topic for people with CP dominated the chat, falling and getting up. Members discussed whether they feel falls more in cold or warmer temperatures. The consensus was cold weather is worse because members feel more stiff.

zach asks if members find there's a difference falling in cold or warm weather, i tweeted that my body tends to be more sore and stiff. zach tweeted he fell during a 5k and used his friend to get up because the cold had him feeling stiff. he finished 726th out of 743.
regina tweeted she feels more stiffness with cold weather. zach asks if she has found any ways to reduce the stiffness, stating he tries stretching and exercising. she tweeted she stretches and does light exercises which help easing leg cramps.

Talk about falls continued with members discussing the difficulty of getting up as they advanced in age.

zach asked what age people started having difficulty getting up after falling. i tweet i have noticed a huge difference in the last few years. zach said he became cautious after he sprained his groin, but he's fallen a few times without complication since then.
chris tweets she has had difficulty getting up after falling and they are working on it in PT. She tweets 911 has had to be called sometimes.

Finally, talk turned to what members wanted for Christmas.

stephen asked what everyone wants for christmas, zach wants a backrest for his computer chair that gives him more support than the pillow. stepehn is getting a retro mimi fridge.

This brings us to our Extend-The-Conversation-Question: What is on your holiday wish list?

extend-the-conversation question graphic: what is on your holiday wishlist with picture of christmas tree in woods

Please share your answers in the comments and join us tomorrow on Twitter at 8 Eastern on #CPChatNow!

-Devin

#CPChatNow Recap- 11/2/2022

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This past week in #CPChatNow was bouncing as always. Members discussed books they are reading, funny conversations related to disability, and Halloween. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

Zach had a book recommendation for #CPChatNow, True Biz, by Sara Novic.

zach asks if anyone has read True Biz by Sara Novic. he tweets it's about a school for deaf and differences in the hearing/deaf worlds. he's reading for a book discussion and enjoying it. chris tweets she has been reading about education in East Africa as part of her job.

Next, I shared a conversation I had on the train with a familiar theme for disabled people, people being amazed that disabled people have jobs and live regular lives.

i tweeted about a conversation on the train where a lady asked me if i worked and i explained my job and the person responded '"Good for you!"

Stephen asked what members did for Halloween.

stepehn asks how everyone's halloween was. i tweeted my wife is tired because is a teacher. zach tweets his was uneventful and stephen watched the curse of bridge hollow

Finally, Zach and I talked about what we are most excited for and most dreading in November.

zach asks what member's least and favorite parts of November are. i tweet Thanksgiving and my birthday and getting colder in my least favorite part. zach tweets Thanksgiving and family and snowstorms is his least favorite part

This brings us to our Extend-The-Conversation Question: What were your Halloween traditions growing up?

Please share your Halloween traditions in the comments and join us at 8 Eastern at #CPChatNow! Thanks for reading!

-Devin

#CPChatNow Recap- 9/28/22

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This past week in #CPChatNow was rocking as always. Members discussed things such as their emergency preparedness plans and what they do for relaxation. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I would like to share this great picture of Hannah and some friends. We are thinking of you Hannah!

hannah tweeted she is popping in to share a happy note that she got to meet her nonbiological sister. there is a picture of hannah with her friend's mom and hannah is holding her dog levi

Next, Zach asked members about their personal emergency preparedness plan, a timely topic given Hurricane Ian. Most members stated they did not have much of a personal emergency preparedness plan. Zach shared a link to a series he previously did for Handicap This on emergency preparedness and disability.

zach asked about members emergency preparedness, i tweeted that i don't think about, but i should. thomas tweeted a recommendation to memorize things to not trust on technology, chris tweeted she does not really have an emergency plan and hoped they don't have an earthquake.

zach tweeted a 3 part series on emergency preparedness he wrote for handicap this and that those in safer states think they don't need to plan, but they do

Finally, Chris talked about her recent exploration with progressive muscle relaxation.

chris tweets about progressive muscle relaxation with her therapist sending her a video she can follow. chris tweets progressive muscle relaxation allows her to relax and recognize body signals like when she is beginning to tense up

Veronica and Chris discussed the difficulties they have had relaxing during medical appointments.

veronica and chris tweet about difficulty relaxing during things like mammograms and chris tweeted her therapist's video with concrete actions help. veronica tweeted it is hard to relax when trying not to fall over

This brings us to our Extend-The-Conversation Question: What are things you do to relax? Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter at #CPChatNow.

-Devin

#CPChatNow Recap- 8-31-2022

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This past week in #CPChatNow was bouncing as always. Members discussed acupuncture, going to concerts, and being involved in planning for their IEP. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, Blemi talked about how she does acupuncture to help with pain.

blemi tweets that she gets acupuncture to help manage pain and she loves it. zach tweets he has never tried acupuncture

Next, Blemi tweeted about a Hanson concert she went to and the venue was accommodating and allowed her to sit. It is always nice when venues are accommodating!

zach asks if blemi enjoyed hanson, she said it was a blast, but she was happy to be home, zach tweets he remembers being sore after seeing bowling for soup, blemi tweeted the venue was accommodating and allowed her to sit.

Next, talk turned to how involved (or not) members were in developing their IEP, Individualized Education Plan.

zach asks how involved people were in their IEP meetings. i tweeted not until high school, but i wish it would've been earlier, zach said he started in 7th and 8th grade.

hannah tweeted she was off and on in junior high, but all she needed was a place to keep her wheelchair and extra testing time, zach said he had two sets of textbooks- one for at home and one for the classroom, blemi asks what an iep is because they don't have them in canada, grace explains it is an individualized education plan for disabled students in the US

This brings us to our Extend-The-Conversation Question: What are some things you do regularly to manage pain?

Thanks for reading and please join us each Wednesday at 8 Eastern at #CPChatNow on Twitter.

-Devin

#CPChatNow Recap- 8/17

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This past week in #CPChatNow was hopping as always. Members discussed adaptive waterskiing, exciting research opportunities for CP, and seeing their doctor for medical issues. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, I want to share a really cool picture from Blemi recently doing some adaptive waterskiing.

blemi shares a picture of her doing adaptive waterskiing. there is a boat with two people behind the boat.

Next, Chris shared information about the Cerebral Palsy Research Network and research they are doing about falls and other topics common to CP.

chris tweets about a research study the cp research network is doing about falls and other things related to adults and recommends people check it out
zach tweets that the research might not benefit us, but it will create greater understanding of cp and adulthood making aging easier for the next generation

Chris also talks about some medical issues she has been having with her esophagus and discusses the importance of getting things checked out as soon as possible.

chris tweets about tests she has done to find issues with her swallowing. zach tweets that is good information to have and chris tweets as soon as anything feels weird it should be checked out.
zach tweets that cp has kept him having a relationship with his doctor since he is on baclofen and needs regular blood tests

This brings us to our Extend-The-Conversation Question: What adaptive activities have you tried?

extend the conversation question graphic. what adaptive activities have you tried? there is a picture of a blue bowling ball on a ramp in front of a bowling lane

Thanks for reading and join us tomorrow at 8 Eastern on Twitter at #CPChatNow.

-Devin