2021

Posted on July 21, 2021 by devinaxtman

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

Posted on July 14, 2021 by zacharyfenell

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

Posted on July 7, 2021 by devinaxtman

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

Posted on June 30, 2021 by zacharyfenell

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

Posted on June 22, 2021 by devinaxtman

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

Posted on June 13, 2021 by zacharyfenell

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

Posted on May 30, 2021 by devinaxtman

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

Posted on May 27, 2021 by zacharyfenell

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

#CPChatNow Recap- 5/12/2021

Posted on May 18, 2021 by devinaxtman

This past week in #CPChatNow was hopping as always. Members discussed routine tasks that are difficult for them with their CP, problematic teachers, and things they are looking forward to doing when the world returns to normal. This is #CPChatNow co-host, Devin Axtman, taking you along for the ride on this week’s recap.

First, Zach opened up the conversation by asking his Extend-The-Conversation Question from last week.

zach opens the conversation by asking which routine tasks feels like an olympic sport due to cp and how members adapt.

Zach shared his strategy for adapting to the routine task of carrying hot liquids:

zach mentions he adapts to the routine task of walking with a hot beverage by using his adult sippy cup, zach tweets he is unsure why he doesn't use his sippy cup around the house

I tweeted about the bane of many people with CP’s existence, buttoning a dress shirt.

i tweeted buttoning a dress shirt is difficult for me and asked for tips, veronica tweeted she buttons and zips one handed and has never had an issue, but it may be that women's button's are on the opposite side. zach tweeted they make shirts with magnetic buttons, i tweeted it reminded me of JJ's pants on speechless

Next, Tonia shared a blog post about an ableist teacher praising her parents and not her for her good report card.

tonia shares a blog post about an ableist teacher that used a report card to praise her parents, i praised her for being vulnerable, zach tweeted knowing when to ask for help is difficult as an adult, let alone being a child. he asks if the help was needed or perceived help. tonia tweeted the help was to be determined by her teacher so it was perceived help.

Finally, members discussed what they were most looking forward to when the pandemic ends:

i ask what members are most looking forward to when things go back to normal. i tweeted i am looking forward to going to sporting events. zach tweeted he is looking forward to doing in-person speaking and author events. veronica tweets she looking forward to seeing more friends and family.

This brings us to our Extend-The-Conversation Question. What do you think makes a good teacher good?

Please share your answers in the comments and join us each Wednesday at 8 Eastern on Twitter. Thanks for reading!

-Devin

#CPChatNow Recap- 05/05/2021

Posted on May 12, 2021 by zacharyfenell

Connections within the #CPChatNow community grew stronger Wednesday, May 5th, 2021. To tell you more, I am chat co-host Zachary Fenell. Welcome to your weekly recap.

Participants in the chat bonded over various cerebral palsy related topics. For example, I joked about how carrying a hot beverage without spilling any should be an Olympic sport.

#CPChatNow participants discuss the challenges of carrying a beverage without spilling.

Carrying hot chocolate from my kitchen into the dining room prompted me to make the Olympic sport quip. Hence why I also specified “hot beverage.” A point relative newcomer to the community Alessandro corrected, noting carrying any beverage without spilling remains a challenge.

Add your input too. Answer as the week’s extend-the-conversation question, “What seemingly ‘routine’ tasks feel like an Olympic sport due to CP?” Actually, in order to avoid simply dwelling on problems, let us make this a two-part question. “What seemingly ‘routine’ tasks feels like an Olympic sport due to CP? How do you adapt to complete the task?” Reply in the “Comments” section.

As the night’s discussion progressed, other cerebral palsy challenges arose. A topic triggered by a question I asked.

Zachary asks #CPChatNow if they ever imagine what life would be like without CP.

Devin and Zachary reflect on how life would be different if they drove.

Curious, I asked if others ever imagined what life would be like if they didn’t have CP. Alessandro admitted wondering about this daily. Meanwhile in a response to chat regular Chris, I hypothesized the biggest difference for me would be driving. My response resonating with my co-host Devin Axtman who said he was going to say the same.

Attempting to maintain a positive outlook, I mentioned how everything has positives and negatives. Not driving creates challenges, but I am also able to say not driving has helped me strengthen friendships.

Keep the positivity rolling and remember to answer the week’s extend-the-conversation question, “What seemingly ‘routine’ tasks feels like an Olympic sport due to CP? How do you adapt to complete the task?” Answer below.

Afterwards, set a reminder to join us each and every Wednesday on Twitter, starting at 8pm ET.

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

-Zachary

This week's extend-the-conversation question is a two-parter, asking "What seemingly routine tasks feels like an Olympic sport due to CP? How do you adapt to complete the task?" — Reply below!

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