#CPChatNow Recap- 7/28/2021

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This past week in #CPChatNow was lit as always. Members discussed aging and CP, perceptions of disabled people, and books by disabled authors. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Chris started the conversation by sharing research that showed people with CP are more likely to break bones as they age with people in their 50s having the bone strength of people in their 80s. This led to conversation about what we can do as we age to help bone health.

zach tweeted a link to an article demonstrating research that people with CP are more likely to break bones in their 50s
i tweeted that is not reassuring, but at least we have research into cp. chris tweeted she is at risk for osteoporosis so she asked her doctor. her doctor said that what you do in your 20s or 30s is important and calcium supplements help. chris tweeted about a friend who had to have surgery for breaking his toe.

Next, Veronica tweeted about her son interacting with a disabled person who other people at work did not respect:

veronica tweeted about an interaction her son had with someone who used her phone to communicate at work. she appeared very smart, but other people did not treat her as smart, karen tweeted that is ableist and wrong, veronica tweeted she feels no one has any patience which is the problem

Finally, talk turned to disabled authors and books members liked to read. First, Karen and Zach discussed Zach’s in progress book.

karen asked if people are going to watch the paralympics. zach tweeted he will if he has his book done by then. karen asked what his book is called. zach tweets the title is still TBA, but the book is about accomplishing the unreasonable which for him is becoming a marathoner.

Karen talked about books related to disability that she liked. She tweeted about All the Way to the Top: How One Girl’s Fight for Americans with Disabilities Changed Everything and Being Heumann. Becoming Heumann is being turned into a movie!

karen tweeted she recommends all children read All the Way to the Top: How One Girl's Fight for Americans With Disabilities Changed Everything. I tweeted it is hard to believe the ADA is 30 years old and karen tweets it is actually 31 years old as of july 26, 2021
karen tweets that Being Heumann is being turned into a movie and asks who is excited. I tweeted my encouragement for people to read the book and karen tweeted she likes the book.

This brings us to our Extend-The-Conversation Question: What is your favorite book or other art created by someone with a disability?

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

-Devin

#CPChatNow Recap- 07-21-2021

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Communal vibes strongly emanated from the weekly cerebral palsy Twitter chat #CPChatNow Wednesday, July 21st, 2021. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

Yearning for the community our Twitter chat provides remained present prior to Wednesday.

Long-time #CPChatNow regular Blemi tweets her eagerness for Wednesday to arrive.

On Tuesday, July 20th long-time chat regular Blemi took to Twitter, wishing the day was Wednesday. All so she could work through the lots of stuff on her mind. After a 24-hour wait, Blemi had her chance to seek support from fellow chat participants.

In accordance with our recap rules to not highlight tweets featuring sensitive life events, I will avoid delving further into that conversation. Although, I can say more then Blemi received support from our community July 21st.

Members in the #CPChatNow community congratulate Alessandro on getting a new job.

Alessandro possessed some exciting news. He officially got a new job! Others in the chat offered congratulatory messages to celebrate.

Elsewhere in the night’s dialogue, talk turned to the spasticity involved in spastic cerebral palsy.

Various participants answer how they would describe their spasticity to others.

In-particular I asked participants how they would describe their spasticity to others. The responses varied. Veronica noted not really getting asked about her spasticity. Meanwhile Blemi replied “I tell them my neurons are always firing making me stiff.” She admitted not knowing whether that stands 100% accurate, but she finds the answer easy to explain.

Additionally, Stacey supplied an easy to understand reply saying if you put anything in the crook of her arm, you will need the jaws of life to get it out. Opposingly, Lorna stated she does not explain it. It’s just that if she thinks too much about moving she can’t move. Lorna also commented she does tell people not to use the word “spaz.”

Regarding managing spasticity, Blemi mentioned a difference maker she recently began using.

Blemi talks about using a magnesium supplement to help with muscle stiffness.

By using a magnesium supplement, Blemi has felt a difference in her stiffness. What about you, though? Answer for the week’s extend-the-conversation question, “How do you manage your spasticity?” Respond in the “Comments” section.

Answer for the week's extend-the-conversation question, "How do you manage your spasticity?"

Please note, what works for one person might not work for another. So if somebody’s answer intrigues you, discuss as needed with the appropriate medical professionals. Let them know you found the suggestion thanks to us at #CPChatNow. We meet each and every Wednesday on Twitter, starting at 8pm ET. Make sure to mark your calendars.

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

-Zachary

#CPChatNow Recap- 7/14/2021

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This past week in #CPChatNow was hopping as always. Members discussed seeing themselves walking, worries about falling, and what Disability Pride Month means to them. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

First, my wedding and me walking up the aisle sparked conversation about walking. I was surprised when I saw myself walking on my wedding highlight video. Members seemed to share the same sentiments.

i ask if anyone else gets surprised with how they walk. zach tweets its a jarring experience. jen tweets she rarely sees herself walking, but yes and she has cringed when she sees herself on video.
zach tweets seeing himself walking is less jarring due to seeing himself in drive thru window, alessandro compared himself to a newborn giraffe, zach compared himself to a drunken stumble. chris tweets the worst thing is hearing herself speak and she knows why she is asked if she is australian, blemi tweets it shocks and horrifies her.
i tweeted it was momentary revulsion and then a thought that i put a lot of work for that walk

Next, members discussed worries about falling. Members specifically discussed concerns of falling at weddings and big events.

zach asked if members got nervous about falling at weddings and similar events. i tweeted i got nervous walking down the aisle and my gait gets worse. blemi tweeted she is skipping the aisle and she gets slower and more self conscious when she is nervous

Finally, members marked July being Disability Pride Month, by explaining what disability pride means to them.

i ask what disability pride means to members to celebrate disability pride month. i tweeted disability pride means identifying as disabled and furthering the notion disability is a beautiful part of diversity.
chris tweeted disability pride means not being ashamed of who she is. being around people who recognize the challenges of her disabilities, but also see the good in them. being comfortable in her disabled skin. blemi tweeted she loves chris' definition

This brings us to our Extend-The-Conversation Question: What is something that routinely surprises you about your disability? Please share your answers in the comments and join us each Wednesday on Twitter at #CPChatNow!

-Devin

#CPChatNow Recap- 07-07-2021

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Participants in the weekly cerebral palsy Twitter chat #CPChatNow gathered for a lively conversation Wednesday, July 7th, 2021. Here to tell you more, I am chat co-host Zachary Fenell. Welcome to your recap.

Various topics came and went throughout the evening July 7th. Early in the night dialogue revolved around the upcoming Paralympics.

#CPChatNow participants discuss Paralympic coverage.

Admittedly, I raised the Paralympic topic when tweeting a BBC News story, “Tokyo Paralympics: Most of Channel 4’s TV hosts will be disabled.” In my tweet, I asked what others thought about Channel 4’s pledge to have more than 70% of its Paralympic presenters be disabled. My co-host Devin Axtman responded, calling the move “much needed.” I agreed, saying involving disabled voices should help prevent an ablest narrative.

Your turn! What do you think? Answer for the week’s extend-the-conversation question, “What do you think of Channel 4’s pledge to have more than 70% of its Paralympic presenters be disabled?” Leave your answer in the “Comments” section.

Continuing on, chat regular Chris and I found ourselves discussing athletes who had to persevere through much adversity. A subject which led me to pose another question.

#CPChatNow participants discuss quotes they tell themselves in order to persevere through adversity.

I asked participants “When facing tough times, what quote or advice do you tell yourself in order to keep persevering?” Long-time regular Blemi responded “Never give up on your dreams,” a quote from Rick Hansen Man in Motion. Meanwhile Alessandro replied “Do or do not. There is no try.”

Putting Alessandro’s chosen advice into action, do remember to answer the week’s extend-the-conversation question. Again, the question asks “What do you think of Channel 4’s pledge to have more than 70% of its Paralympic presenters be disabled?”

This week's extend-the-conversation question asks "What do you think of Channel 4's pledge to have more than 70% of its Paralympic presenters be disabled?"
Reply in the “Comments.”

Afterwards, set yourself a reminder to join #CPChatNow each and every Wednesday, starting at 8pm ET. Or, tweet me and ask me to include you in my weekly #CPChatNow reminder tweet. Until our next correspondence, remember. Don’t blend in. Blend out!

-Zachary

#CPChatNow Recap- 6/30/2021

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This past week in #CPChatNow was a happening as always. Members discussed how the heat impacts their CP, feelings after a job interview, and their favorite summer activity. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap. All aboard!

Zach asked members how the heat impacts their CP. Most answered that the cold impacts them much more, but Grace described some impacts from the heat:

zach asked if members are impacted by heat. grace answered she gets spasticity in the cold, but prefers it to summer. she gets muscle spasms because of dehydration, headaches with barometric pressure changes, and depression with brain fog. grace thinks she has summer SAD

Zach has had job interviews lately and we discussed the feelings experienced after a job interview:

chris talked about how she was exhausted due to setting up her boyfriend's computer, zach tweeted he is tired due to work in the morning and a job interview in the afternoon, he tweeted it was emotionally tiring with nerves beforehand, second guessing afterwards. i tweeted that's the worst part of a job interview that it's helpful to look back, but only helpful to an extent
zach tweeted he is fortunate to have a great support system that gives him advice. at some point you have to trust yourself and answer how you feel is best.

Finally, members discussed their favorite summertime activity.

zach asked what is your favorite summer activity, he tweeted attending a baseball game is one of his favorites along with swimming, i tweeted i like to hang out in my parent's backyard, blemi tweeted she likes to sit outside and read.

Now it’s your turn! This brings us to our Extend-The-Conversation Question: What is the best advice you have received about a job interview? Please join us tonight at 8 Eastern on #CPChatNow on Twitter.

-Devin

#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- 6/16/2021

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The #CPChatNow recap is back and I am back from my wedding and honeymoon! This week members discussed research and publishing, resuming attending large events, attitudes towards disability, and more! This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, I would like to share some recent exciting news! I’m married!

i tweet that i am married, zach asks if i put streamers and tin cans on the back of my wheelchair saying just married, i tweet that i did not and it was an opportunity missed, zach tweets he should made the suggestion sooner

I added some events to our mythical CP Olympics that I participated in during my wedding and honeymoon.

i tweet i can add putting on a tux and boarding a boat offshore to the CP olympics. chris tweeted she is not wearing a dress if she gets married because you need a bunch of people to help you and the weight of the dress

Next, members discussed returning to large events in the midst of the end of the pandemic.

zach tweeted he is still avoiding large events like indians games until he knows covid is not going to surge, i tweeted i am going to money in the bank and dynamite in july and probably going to wear a mask

Finally, I described differing attitudes towards disability that I experienced on my honeymoon and gave examples of differing responses.

i tweeted it is interesting that different countries have different attitudes towards disability. i tweeted on my honeymoon i was not seen as capable, but i did get to the front of a few lines

zach asked if i had an example of not being seen as capable. i tweeted about going through the airport in antigua, but i did get to go to the front of the line at customs, zach tweeted everything has positives and negatives and that efforts to help are not always helpful.

This brings us to our Extend-The-Conversation Question: When do you plan on returning to attending large events? Please share your answers in the comments and join each Thursday at 8 Eastern on Twitter!

-Devin

#CPChatNow Recap- 06-02-2021

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Participants in the cerebral palsy Twitter chat #CPChatNow enjoyed a buzzing conversation Wednesday, June 2nd, 2021. Here to tell you more, I am chat co-host Zachary Fenell. I acknowledge I am late bringing you this recap. So rather than wasting more time with an explanation, I say let us get straight to the recapping!

Excitement for my co-host Devin Axtman surfaced early in the chat.

#CPChatNow participants wish co-host Devin well on his upcoming wedding.

The source for the excitement stemmed from Devin’s forthcoming wedding that weekend. Both long-time regular Blemi and I wished Devin well on the upcoming celebration.

Speaking of Blemi, her recent Youtube video about conserving energy sparked dialogue.

#CPChatNow participants discuss taking vitamins and other supplements to help boost energy levels.

After watching Blemi’s video, I asked who takes vitamins or supplements to boost energy levels. Veronica responded, saying she takes a vitamin C immune booster. Devin noted while not energy related he takes Omega Red and vitamin D. All the vitamin and supplement discussion led to dialogue on another subject, swallowing pills.

Participants in #CPChatNow discuss their skill level at swallowing pills.

Veronica and Blemi found comfort in knowing they are not alone in having difficulty swallowing pills. Difficulty rooted in short gag reflex. Meanwhile Devin and I spoke about our abilities to swallow pills. What about you though? Answer as the June 2nd extend-the-conversation question, “How do you fare at swallowing pills?” Leave your answer in the “Comments” section.

Perhaps your ability to swallow pills relate to whether you have water to drink. Fittingly, drinking water became yet another topic discussed due to Blemi’s conserving energy video.

#CPChatNow discussion evolves to discuss drinking water.

Some participants mentioned not liking how water tastes. Veronica offered advice, saying she adds a splash of fruit flavored vinegars to her water. Responding to Veronica, I stated I like plain water but I have to remind myself to drink. Continuing, I added my own tidbit for reminding myself to drink water. Keeping a water bottle in the refrigerator. Veronica meanwhile uses an app to track her water intake.

By chance you need water to swallow pills, that would provide a steady reminder to drink. Make sure to mention if you drink water to help swallow pills when you answer the week’s extend-the-conversation question, “How do you fare at swallowing pills?”

This week's extend-the-conversation question asks "How do you fare at swallowing pills?"

Answer below! Then mark your calendar to join us each and every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

#CPChatNow Recap- 5/26/2021

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This past week in #CPChatNow was fire as always. Members talked about their recent accomplishments, life insurance with CP, and their plans for the summer. It was evident that members are excited for COVID to be in the rearview mirror. 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 recognize some members for their recent accomplishments. Timmy recently passed his qualifying exam to be a PhD candidate:

i ask timmy how he is doing. timmy tweets he passed his qualifying exam and is now a PhD candidate

Jorge also mentioned that he is about to graduate with his Master’s Degree from the University of Virginia:

jorge tweets t-2 weeks and then he wins the honors of honor which is graduating from the school founded by Thomas Jefferson
Jorge also tweeted about the unfortunate differences people with CP face when it comes to life insurance benefits:
jorge asked members if they knew due to cp that life insurance payouts would be reduced. zach asks what the reasoning is. jorge tweeted burden of care as not all cp cases remain stable. i tweeted that does make senes and guessed that is the case for a lot of stuff and wondered if i will get any money

Next, members talked about their varied plans for the summer.

i asked what everyone's plans are for the summer and that i'm getting married next week, veronica congratulated me and said she was stuck with the same date for way too many years, jen tweeted she doe not have much planned, zach tweeted he does not have much planned and that ohio is going back to normal june 2nd, he is planning to be cautious for about a month

Chris Johnson talked about the latest with his podcast, the Purple Knights Podcast, a podcast about Prince:

chris johnson tweeted he would like to keep up the momentum with his podcast and leave the single life behind, zach asked how he defined momentum, chris tweeted he wants to release episodes more often and continue to book well respected guests in the prince community and he has gotten some great ones lately. zach tweets he feels defined goals are easier to maintain

Finally, Chris tweeted about finishing her Master’s:

chris tweeted she is hoping to continue her masters and have it done by christmas

This brings us to our Extend-The-Conversation Question: What is your biggest goal for the summer?

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

-Devin

#CPChatNow Recap- 05-19-2021

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Quietly Wednesday, May 19th, 2021 snuck up on participants in the cerebral palsy (CP) Twitter chat #CPChatNow. Please allow me, chat co-host Zachary Fenell, to tell you more. Just keep reading.

As already mentioned, Wednesday evening quietly snuck up on our community.

#CPChatNow had a slow start Wednesday, May 26th, 2021.

My co-host Devin Axtman admitted forgetting it was Wednesday. Meanwhile long-time regular Blemi remained distracted by the NHL playoffs. Nevertheless, our chat persevered through the momentary forgetfulness and outside distractions.

#CPChatNow co-hosts Zachary and Devin discuss what they would like to see from future cerebral palsy documentaries.

Conversation between Devin and I thrived when I asked a question based around a Disability Scoops article I read. The article, “Teen’s Documentary About Life With Disabilities To Screen Worldwide,” highlighted 17-year old Faith Guilbault’s documentary about life with disabilities. Leading me to ask what others would want the audience takeaway to be if they created a documentary about living with CP.

Replying Devin said he wanted to see a documentary focused on people at various stages in their lives. Continuing the conversation I remarked to Devin such a documentary would be comprehensive and a great resource. What about you, though? Keep the dialogue going. Answer as the week’s extend-the-conversation question, “If you were to create a documentary about living with CP, what would you want the audience takeaway to be?” Respond in the “Comments” section.

Perhaps, your takeaway might involve emphasizing how cerebral palsy impacts people differently. If so, you would relate to further discussion from the night.

The topic surfaced after I watched Blemi’s Youtube video about “inbetween-living.” Feel free to watch for yourself.

Curious, I asked Blemi if certain feedback she received sparked the video. She replied yes. Hoping to counter the negative voices, Devin and I both offered our support. Devin specifically noting CP has “a spectrum of severity.” Sounds like a possible audience takeaway for a documentary to me. Bringing us back to the week’s extend-the-conversation question, “If you were to create a documentary about living with CP, what would you want the audience takeaway to be?”

This week's extend-the-conversation questions asks, "If you were to create a documentary about living with CP, what would you want the audience takeaway to be?"

Answer below! Afterwards mark your calendars to join us each and every Wednesday on Twitter. The fun begins at 8pm ET.

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

-Zachary

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