Tag Archives: aging with cerebral palsy

#CPChatNow Recap- 6/15/22

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This past week in #CPChatNow was bustling as always. Members talked about acceptance of CP, aging with CP, and the importance of walking. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Stephen asked Zach when he accepted his CP and this led to a conversation about adjustment to disability:

stephen asks zach how long it took to accept his cp, zach tweeted he was 18 or 19, but it still can be a work in progress, i tweeted i don't think someone is ever fully adjusted to cp as life happens

Next, talk turned to a common topic among #CPChatNow members, aging with CP, after Chris shared an article about functional decline.

chris tweeted about an article about functional decline with cp

zach tweets about kids with cp having access to state and federal programs with insurance and a deficit for adolescents and adults, chris tweeted even people recognizing CP impacts adults differently and causes sorts of problems which we have to start teaching people

Finally, talk turned to the importance (or lack thereof) of walking. Members discussed the importance of staying active while also listening to their body as aging happens.

zach tweets about me saying not walking isn't bad and that walking can be bad if it puts extra stress on the body in order to walk independently. chris speculates this could have led to her arthritis, but she expressed frustration that doctors emphasize activity. zach tweets there is a need for balance with activity being important and nutrition being another piece with sleep also being important.
chris tweets she felt seen by the article she shared and with the struggles and frustration of watching her body change after being told it wouldn't while planning for life one way and cp impacting her body differently. grace tweets that her doctors overemphasize walking and walking without devices where they promise stability if you do that which not everyone can.

This brings us to our Extend-The-Conversation Question: What are some aspects of functional decline you have noticed with CP and aging? Please share your answers in the comments.

Thanks for reading and please join us tonight on Twitter at #CPChatNow.

-Devin

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#CPChatNow Recap- 06-23-2021

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Conversation thrived Wednesday, June 23rd, 2021 during the cerebral palsy Twitter chat #CPChatNow. Here with the details, I am chat co-host Zachary Fenell. Come and join me for your weekly recap.

Interestingly, much dialogue sparked from a single question.

Participants in #CPChatNow answer what topic related to living with cerebral palsy they wish they could find more information on.

That question asked “What topic related to living with cerebral palsy do you wish you could find more information on?” Answers ended up containing a common theme. Long-time regular Blemi responded saying she wants to know how aging actually works for us. Similarly, Grace expressed an interest in how CP affects other health issues. My co-host Devin Axtman seconded Blemi and Grace, in-particular mentioning treatments as we age. A point I thought to emphasize.

#CPChatNow participants discuss how attitudes towards CP treatments change with aging.

Piggybacking off Devin’s comments regarding treatments as we age, I noted often the discussion about treatments revolves around children. This causes the idea of continued treatment into adulthood getting lost. Or, at least the attitude towards treatment for adults with cerebral palsy differs. A distinction Grace offered input on.

Grace and Zachary discuss balancing treatment options and realistic expectations.

Grace stated her belief learning what your body can do and maintaining that remains realistic. I agreed, but added what you can and cannot do are not permanent fixtures. To support my response I explained setting smaller goals that build on top of each other can lead a “cannot” to become a “can.”

Enough about my thoughts though! Time for you to contribute your insights. Answer as the week’s extend-the-conversation question, “What does continued cerebral palsy treatments into adulthood look like for you or the adult with CP in your life?”

Answer below! Afterwards, mark your calendar to join us live each and every Wednesday. The fun starts at 8pm ET.

Until then, remember. Don’t blend in. Blend out!

-Zachary

This week's extend-the-conversation question asks "What does continued cerebral palsy treatments into adulthood look like for you or the adult with CP in your life?”
Answer below! “What does continued cerebral palsy treatments into adulthood look like for you or the adult with CP in your life?”

#CPChatNow Recap- 3/17/2021

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This past week in #CPChatNow was happening as always. Members discussed positives that were occurring in their life and how their disability has helped them stand out. We are also proud to announce our Family Reunion Focus Chat! This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, we are excited to announce our Family Reunion Focus Chat. Please join us Wednesday (3/24) on Twitter to reconnect (or connect!) with #CPChatNow community members, both longtime and new!

zach tweets announcing the #cpchatnow family reunion for march 24th. there is a graphic announcing the reunion and inviting people too join

Next, I would like to recognize Dick Hoyt’s death. Dick and his son Rick who has CP have inspired many by their participation in marathons and triathlons.

i recognize the death of dick hoyt and share a link to his obituary, there is a picture of him pushing his son rick.
zach tweets dick hoyt's death made him think of ultimate warrior's promo before his death. dick hoyt helped others believe and made their blood pulse through their body.

Zach also asked members about a positive in their week. Tonia shared a blog post she wrote in the past week about 10 things no one tells you about aging with CP. I can definitely agree with number 3!

zach asked what about a positive thing from member's past week's. tonia shares a new blog post about 10 things no one tells you about aging with cp.

Finally, Zach asked members how their disability has helped them standout.

zach asks how member's disabilities have helped them standout and excel. i tweeted it has given me an opportunity to share my story with others and build relationships. zach tweets he can say the same thing and his cp gave him a purpose, more than clocking in and out of a job.
Chris also shared her favorite quote about disability regarding being open to differences and fighting for social justice as the ways she tries to standout.
chris tweets about her favorite quote from an activist and social worker with CP, there is an image of the quote, zach tweets he feels he is a better friend to others because he is more open minded and willing to listen, chris tweets she likes the quote because she feels the memoir is the first time she is reading about herself or her experiences

This brings us to our Extend-The-Conversation Question: How has your disability helped you excel? Please share your answers in the comments and join us next Wednesday, March 24th for our Family Reunion Focus Chat on Twitter at 8 PM Eastern.

-Devin

#CPChatNow Recap- 8-2-2017

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This past week in #CPChatNow brought up varied topics as always.  Members discussed issues with healthcare professionals, breaking in athletic shoes, and our Focus Chat next week on accessible gaming with AbleGamers!  This is #CPChatNow Co-Host, Devin Axtman, taking you along for the ride.

A common theme this week was discussion of member’s distrust of healthcare professionals.  Rachel expressed frustration that medical professionals do not want to discuss Cerebral Palsy, but they are happy to treat the symptoms of CP.

Devin tweets about how doctors blame CP for stuff while Rachel tweets that professionals rarely discuss her CP and just treat symptoms

Rachel further expressed her frustrations with medical professionals predictions being wrong about her abilities.

Rachel expressing frustration about ways medical experts have been wrong about her ability

Next, talk turned to stupid questions asked by doctors when Hannah chimed in with a stunning question from a doctor.

Zach tweeted about stupid questions asked by your doctor. Hannah said she had a doctor ask if she still had CP. Rachel pointed out this is like a Speechless scene

Zach also expressed frustration about breaking in his new athletic shoes. Rachel pointed out this has been issue for her, but she has gotten relief from inverts and a new masseuse.

Zach expressed frustration it has taken awhile to break in new athletic shoes. Rachel pointed out this takes 6 weeks, but she has gotten relief from inverts and a new massuese

Members discussed issues they experienced with extreme temperatures.  Zach also shared he set a personal best in a 5K as he works towards completing a full marathon.

Blemi then discussed difficulties her body experiences during extreme cold.  Rachel shared she also has difficulties with extreme cold.  Zach shared some happy news that he had just set his personal best in a 5K.

Finally, #CPChatNow is incredibly excited to announce that our next Focus Chat will be next Wednesday, August 9th, with the folks behind AbleGamers. AbleGamers is a 501(C)(3) nonprofit public charity that aims to improve the overall quality of life for those with disabilities through the power of video games.  Craig also reached out to Rachel after she expressed frustration surrounding video games.

Zach announced the AbleGamers Focus Chat for August 9th, Rachel expressed frustration with video games, Craig from AbleGamers reached out to her to offer assistance.

This brings us to our Extend-The-Conversation Question and it ties in to next week’s Focus Chat: What are difficulties you have experienced surrounding CP and gaming? Please share your answers in the comments.  Also, don’t forgot to join us for our Focus Chat next week! A black background with the extend-the-conversation question What are difficulties you have experienced surrounding CP and gaming? in gray text with gaming in all caps. #CPChatNow white logo in bottom left hand corner

Tweet you later!

-Devin

#CPChatNow Recap- Aging with Cerebral Palsy Focus Chat

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On Wednesday, May 31st, 2017 #CPChatNow presented a much anticipated focus chat about aging with cerebral palsy. Interim co-host Devin Axtman and I (co-host Zachary Fenell) alternated asking the questions you in our community suggested. Questions which triggered vibrant conversation. Some highlights follow below.

Now any credible chat on aging with cerebral palsy requires individuals willing to discuss their personal experiences. Therefore to start the Q & A we asked participants comfortable doing so to share their ages. Majority in the group fell between mid-20s and mid-30s. Although a few elder-statespeople ranging in age from 40 to 55 chimed in too. Meanwhile the youngest participant remains amidst her final year as a teenager.

Once we established our participants’ credibility, we delved into our more substantial questions. Our second question addressed what to expect aging with cerebral palsy and how to handle said expectations.

The second question of #CPChatNow's Aging with Cerebral Palsy focus chat asks about expectations aging and how to deal with these expectations.Rachel expressed concerns related to every day wear and tear to the body, symptoms possibly worsening, and even new symptoms. In my personal response to the question I mentioned lacking resources for adults with cerebral palsy.

Co-host Zachary Fenell mentions compared to kids, adults with cerebral palsy possess less resources to help deal with CP.Turned out others also related to using older braces. Alena‘s reply particularly revealed an ill-fated perception viewing new orthotics as a “kid thing.” Concentrating more towards items we can control, Maysoon Zayid offered up hope.

Maysoon Zayid explains lifestyle changes she made in order to help lessen her cerebral palsy symptoms. Through lifestyle changes like practicing yoga regularly and avoiding animal products, preservatives, dyes, and caffeine Maysoon explained that her CP symptoms lessened. What about you? Your turn to add to the conversation! Answer for the week’s extend-the-conversation question, “What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?” Leave your response in the “Comments” section.

Maybe similar to Maysoon, you benefited thanks to yoga. Actually, similar to Maysoon and others considering multiple people praised yoga during our “Aging with Cerebral Palsy” focus chat.

Newcomer to #CPChatNow Grace Lapointe also has had positive experience with yoga.John W. Quinn, one of the original #CPChatNow co-hosts, finds yoga helps with balance issues plus back and hip pain.#CPChatNow newcomer Grace Lapointe and a fellow #CPChatNow founding father John W. Quinn alike endorsed practicing yoga. All the praise left another newcomer Christine seeking advice for getting started.

Christine wonders about yoga and expresses concern about toppling over.Christine vocalized hesitation in getting started, nervous about toppling over. Participants rallied to encourage Christine. John and Maysoon both disclosed using assistance when first beginning yoga.

John W. Quinn and Maysoon Zayid talk about their beginnings with yoga.Alongside the yoga chatter, our set questions for the evening continued. Question three asked about others’ experiences and tips to make life easier. That led to Maysoon offering up an observation.

Maysoon Zayid notes an observation that many individuals with cerebral palsy forget aging impacts everyone.Similarly, John advised separating cerebral palsy from emerging health issues.

John W. Quinn advises to separate cerebral palsy from emerging health issues.Next the conversation transitioned to the biggest surprise and frustration to accompany aging.

Dwindling mobility and discomfort sleeping proved re-occuring answers from #CPChatNow participants when discussing the biggest surprise and frustration caused by aging.

A couple re-occurring themes appeared when community members named the biggest surprise and frustration accompanying aging. Those themes including dwindling mobility and discomfort when trying to sleep. Ending the night optimistically, John recognized the potential boost ekoskeleton braces could offer the cerebral palsy community in the future.

John W. Quinn believes ekoskeleton braces could provide the CP community a boost in the future.Hopefully our “Aging with Cerebral Palsy” focus chat recap will give you a boost in dealing with CP in your future. Remember you may keep the conversation going by answering the week’s extend-the-conversation question.

Answer in the "Comments" section- What changes to cerebral palsy with regards to aging should we expect and how do you deal with them? “What changes to cerebral palsy with regards to aging should we expect and how do you deal with them?”

Respond by commenting below. Expect Devin in the next few days with the recap for our June 7th Twitter chat. Until next time!

-Zachary

#CPChatNow Recap- 5-24-2017

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This week’s #CPChatNow Twitter chat was a meandering chat that reflected the busy nature of our member’s lives.  There was even a little bit of Español thrown in!  I am #CPChatNow Interim Co-Host, Devin Axtman, and I will be taking you along on this week’s recap.  All aboard!

This week’s chat took on numerous topics, but a well discussed topic was member’s feelings about the impact of therapy in their life.  Rachel shared a funny antidote that doing dishes was therapy for her after Blemi shared she was exhausted from doing dishes:

Rachel states doing the dishes was occupational therapy for her after Blemi suggests she was exhausted from them

#CPChatNow regular, Jessica, also shared why she felt the common belief that Physical Therapy is simply an extension of personal training is misplaced.  She shared this is more the case for adults, while for kids PT is about re-establishing Nuero pathways.

Also, one of #CPChatNow’s founders, John Quinn, stopped by and shared the latest always interesting developments in his life.  Seriously, check out his book, Someone Like Me, it is an outstanding description of his life with CP.

John Quinn shared a copy of his book Someone Like Me with an Academy Award winning actress

In some happy news, our #CPChatNow Co-Host now known as Jorge Oteiza, is back from Spain and enjoying some family time, overalls, and a new tattoo.

Picture of Jorge Orteiza with his grandma in overalls

Also, Jorge shared some positives and experiences from his trip to Spain:

Jorge's positives from Spain: knowing the metric system, friends, and an intact phone after dropping it in the train tracks. Rachel advised not doing that in Chicago

Next, this brings us to the announcement of our focus chat on aging with CP. Please join us tomorrow, Wednesday, May 31st at 8 EST.

Zach announcing our focus chat on aging

Finally, I would like to go back to the beginning of our chat for Rachel’s discussion about washing dishes being therapy to our Extend-The-Conversation-Question: What non-traditional forms of therapy have you used?

A picture of waves crashing on the shore with white #CPChatNow logo and the extend-the-question conversation: What non-traditional forms of therapy have you used?

Please join us tomorrow at 8 EST for our focus chat on CP and aging.

Tweet you soon!

-Devin

#CPChatNow Recap- 05-17-2017

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Many interesting topics emerged Wednesday, May 17th, 2017 during the weekly cerebral palsy Twitter chat #CPChatNow. Or at least I, co-host Zachary Fenell, found the subjects intriguing. Go ahead and use this recap to draw your own conclusions.

Early on I asked about others’ sleeping habits. Specifically I sought information regarding the positions people sleep in and how many pillows they sleep with.

Co-host Zachary Fenell and participant Blemi discuss the positions they sleep in.Blemi tweets a photo of a Contour pillow that she recommends using between your knees.As I revealed in my back and forth with Blemi, curiosity motivated my question. I wondered if CP played a role in the positions we find comfortable. The various responses helped to provide the data needed to make such an evaluation.

#CPChatNow participants discuss the positions they sleep in at night.Overall laying on your side with legs bent seemed the most popular sleeping position. Around 8:30pm ET our May focus chat announcement transitioned the conversation to a different matter.

Zachary announces on May 31st #CPChatNow will hold a group-led focus chat about aging with cerebral palsy. The announcement sparked early dialogue on the subject.Aging with cerebral palsy proves an in-demand issue. Like the above screenshot shows, participants couldn’t wait until May 31st to start addressing multiple points! We hope you will mark the “Aging with Cerebral Palsy” focus chat in your calendar and join us Wednesday, May 31st.

Concentrating back on our May 17th chat, friendly chatter kept the night progressing. This entailed individuals’ to-read lists. Mentioning a cerebral palsy memoir on my own to-read list caused the dialogue to evolve.

Interim #CPChatNow co-host Devin Axtman explains why he would not write a cerebral palsy memoir.Interim co-host Devin Axtman noted he considers his life “pretty typical” and not really memoir worthy. Other participants expressed similar sentiments. Going a step further, Devin critiqued the disability stories currently out there.

Devin critiques disability stories, referring to a lot of them as repetitive. Devin’s thought that disability stories can get repetitive spurred disagreement with #CPChatNow regular Rachel Folly. She supported her opinion with cerebral palsy’s individualistic nature. Devin further explained his critique, detailing what he deems the same story arch. What do you think? Let us know by answering for the week’s extend-the-conversation question, “Do you find disability stories repetitive? Why or why not?”

Leave your reply via a comment in the “Comments” section. Perhaps we will even revisit the question during our May Google Hangout. As Devin reminded us, the video chat takes place on Thursday, May 25th, 2017.

Co-host Devin Axtman reminds #CPChatNow that our May Google Hangout will be Thursday, May 25th.Towards the chat’s end a younger participant Kate initiated discussion asking others about how participants’ parents handled the cerebral palsy diagnosis. Replies demonstrated varying approaches taken.

#CPChatNow participants share how their parents handled the cerebral palsy diagnosis.This week's extend-the-conversation question asks "Do you find disability stories repetitive? Why or why not?"Thank you all for reading and your interest in #CPChatNow. Hopefully you can make tonight’s chat, beginning as usual at 8pm ET. If you cannot participate this week though, please try participating next week on Wednesday, May 31st for our “Aging with Cerebral Palsy” focus chat. Until later remember to answer the week’s extend-the-conversation question.

“Do you find disability stories repetitive? Why or why not?”

Comment below to respond!

Tweet you soon,

-Zachary

#CPChatNow Recap- 04-05-2017

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Hit sitcom Speechless and aging with cerebral palsy proved popular topics during the April 5th, 2017 #CPChatNow. I am co-host Zachary Fenell here with the better late than never Twitter chat recap. Conversation turned to Speechless shortly after our usual Wednesday evening salutations.

Zachary asks about topics people want to see addressed on the show Speechless.Discussion initiated when I asked about subjects people want to see Speechless address in future episodes. Blemi spoke up, saying she wants to see an episode addressing fake friends. Another participant went further, expressing a desire to guest star on the sitcom. Not as farfetched a possibility as you might think!

Comedian and actress Maysoon Zayid wants to guest star on Speechless as Maya's disabled friend.Yes, actress and comedian Maysoon Zayid popped in to join our Wednesday evening chat. She wishes to guest star on Speechless, playing Maya’s disabled friend and hang/fight with the other moms. Does that sound intriguing to you? Tweet Speechless on Twitter and tell them you want to see Maysoon guest star!

Maysoon’s presence also brought a newcomer to #CPChatNow. He shared what he hopes to see in a future Speechless episode.

Newcomer to #CPChatNow Dave Smith wants to see a variety of CP cases on a Speechless episode.Personally, I like Dave’s idea to showcase the wide spectrum cerebral palsy offers. Your turn, though. Answer for the week’s extend-the-conversation question, “Is there a topic you would like to see Speechless address in its show that they have yet to address?” Respond in the “Comments” section.

Eventually the night’s dialogue moved beyond Speechless. Although the first new topic remained Speechless inspired. The night’s episode delved into the ways teachers interact with their disabled students. #CPChatNow regular Hannah reacted to this.

#CPChatNow participants discuss their teachers and the levels of expectation they possess for disabled students. While Hannah couldn’t relate directly to what happens in the episode, she shared a similar experience and the emotional impact said situation created. Emotions discussed soon transitioned from hurt to fear thanks to chat regular Jen.

Jen wants to discuss fears, a notion seconded by Blemi.Here the previously mentioned aging with cerebral palsy subject arose.

#CPChatNow participants discuss the possibility of losing mobility as they age. Amidst the sharing and peer learning Maysoon offered some well needed positivity.

Maysoon recommends yoga to help combat aging with cerebral palsy. Hamda seconds the suggestion sharing a list of yoga resources. Hamda supported Maysoon’s yoga suggestion, linking to a resource list for adaptive yoga. Checkout the list, courtesy American Academy for Cerebral Palsy and Developmental Medicine. Maybe you will discover something worthwhile to you.

Answer for this week's extend-the-conversation question "Is there a topic you would like to see Speechless address in the show that they have yet to address?"However before viewing the list, remember to answer the extend-the-conversation question. “Is there a topic you would like to see Speechless address in its show that they have yet to address?” Reply below in the “Comments” section.

Thank you for your interest in #CPChatNow. I look forward to tweeting you tonight.

Sincerely,

-Zachary

#CPChatNow Recap- 03-29-2017

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Some cheers likely rang out in the #CPChatNow community when flipping the calendar from March to April. Just my speculation as #CPChatNow co-host Zachary Fenell. Pretty ironic though, given March’s designation as Cerebral Palsy Awareness Month. Still I possess reason behind my postulation.

Seemingly every week in March participants joined in seeking to escape from rough and tiring seven days. Same held true for our final March 2017 Twitter chat.

Zachary Fenell tries to reroute #CPChatNow from going down the rough, tired road another week.

As the above shows, Jen possessed good cause to feel tired. A tornado touched down in her town! Thankfully everyone she knew remained safe. Finding comfort in that fact, the Twitter chat progressed forward.

Both interim co-host Devin Axtman and myself spurred dialogue mentioning posts we found on The Mighty website. Actually his share “Why I Am Studying to Be a Physical Therapist with Cerebral Palsy” inspired my share.

Zachary Fenell shares an article questioning the narrative often seen with disability related prom stories.You can read the piece yourself, “The Problem with Those Prom Stories About People with Disabilities.” The idea to change narratives requires addressing how the mainstream media portrays life with a disability. Those in our community pointed out multiple problems with the current status quo portrayal.

#CPChatNow participants share their mainstream media pet peeves with regards to how the media portrays life with a disability.Habit to pity, inspirational undertones, and fitting us into a cookie cutter news template only marked a few pet peeves highlighted. Regular Hannah Pike spoke up, hitting upon a quite frustrating topic.

Hannah gets frustrated with how the media makes disability seem like an issue exclusively impacting kids.Maybe you agree with Hannah. You too growing irritated watching the media make disability appear a stand alone issue impacting children. Or, perhaps something different peeves you. Let us know! Answer for the week’s extend-the-conversation question, “What is your biggest pet peeve of how the mainstream media portrays disability?” Leave your response in the “Comments” section.

Going back to the 29th, Hannah’s response segued to a conversation discussing aging. Regular Jocelyn playing a pivotal role in transitioning subjects, noting CP’s long-term effects on the body. A real concern despite cerebral palsy’s technical non-progressive status.

#CPChatNow discuss aging with cerebral palsy.Like the above screenshot reveals, I am hoping to organize an aging with cerebral palsy focus chat for May. Make sure you stay tuned for such an announcement, along with our April focus chat announcement. The latter should arrive imminently. Not this week, but probably next week.

This week's extend-the-conversation question asks "What is your biggest pet peeve of how the mainstream media portrays disability?" Answer in the "Comments" section.Distract from the building anticipation regarding our upcoming focus chats. Remember to answer the extend-the-conversation question.

“What is your biggest pet peeve of how the mainstream media portrays disability?”

Reply in the “Comments” section. Tweet you soon.

Sincerely,

Zachary