#CPChatNow Recap- 7-5-2017

This past week was a lively week on #CPChatNow as always.  Members discussed finding shoes that fit them, working on a disability pride march, important issues that face the disability community, and invasive questions they have been asked about their CP.  This is #CPChatNow Co-Host, Devin, taking you along for the ride. Enjoy!

This chat started out with some happy news as Hannah noted she found some sandals she can walk in:

Hannah tweets that she found sandals she can walk in and bought both shoes. There is a picture of her foot in a pink sandal. Zach replies that it is the little things in life while Hannah responds she is just happy to find shoes she can walk in

Next, Rachel noted that she is working on translating the Chicago Disability Pride March brochure into Spanish. We love to see positive change at #CPChatNow!

Rachel noting she may be working on translating the Chicago Disability March brochure into Spanish or at least volunteering for the march

Then, talk turned to Gabriella Burman’s question of, “What is the most important issue keeping people with disabilities from living a full and independent life?”  I started out by saying that I felt the most important issue is a society that is not set up for us. Transportation and attitude also came up.

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don’t give someone a chance, do all of the other variables matter?

There was also a discussion of whether attitude is the most important factor when it comes to accessibility. I pointed out that if you don't give someone a chance, do all of the other variables matter?

Finally, talk turned to what is the most invasive question anyone has been asked about their CP.

Zach asks what the most invasive question people have been asked is. Suzanne reports being yelled at an airport for using the accessible stall. I pointed out that I get questions about why I am walking if I use my wheelchair

Hannah “won” the question (although, I don’t know if there are any winners here) by tweeting that she was asked how she used the restroom by herself.

Hannah tweets that she was asking how she uses a public restroom by herself. Zach says that it is better than being patronizing. Hannah tweeted that she just ignored the question

For our Extend-The-Conversation question, I would like to go back to Zach’s tweet about Hannah’s shoes being an example of “the little things” in life.  What are some of the little things you take pleasure in regarding CP?

Be sure to join us every Wednesday at 8 EST on #CPChatNow on Twitter!

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Devin White text in front of a background of waves crashing onto rocks: What are some of the little things you take pleasure in regarding CP? White #CPChatNow logo below question

#CPChatNow Recap- Aging with Cerebral Palsy Focus Chat

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