Cerebral Palsy & Aging In Community

This is probably going to be more like a “patchwork post” so bear with me this could end up going anywhere.

Having Cerebral Palsy can be a lonely experience, especially if you don’t have any friends with CP or know anyone older than you who has CP. Things have changed thanks to social media but there are times when that’s not enough.

I didn’t have any serious friendships with people with CP until my 20s but I knew of people with CP so that was enough for me, until I got older. I’m not sure what changed but something tells me it has to do with post college life (and it seems like it doesn’t matter what your ability/disability is).

I had a great group of friends in college, especially during the second try, but they were always down the hall, in class, or in the same social circle. The majority of them are/were able-bodied and the fact that I had CP wasn’t really high on the list of topics.

But as our careers as undergrads were coming to an end we were warned, and I should have listened, like even a little.

Once I graduated my bubble was gone, I had to look for my community. I couldn’t just wander down the hall or into the dining hall and interact with people who I knew and knew me. I had to work for it (and I still do), add in introversion and it’s a tall order.

Life after college is where things really started to be different, almost all of my able-bodied friends found “a place to land” whether it be grad school, full time jobs, or ministry. But I moved back home, the last place I wanted to be, and tried to start my life after college.

I never thought of networking my way through college, like some do, and didn’t even consider how being disabled would factor into my future and how networking may have helped (and in all honestly, I don’t think anyone else ever brought it up either).

So, I would sit in front of my computer for hours on end seeking out community (and a job). I did this for two reasons, 1) social media was picking up steam and 2) I didn’t actually want to put forth the effort to go out and meet people face to face, again introvert.

I found a community I had been ignoring because of the internet but I’ve still lost the immediacy of community that I had in college (and by extension my 20s). It’s a “six of one, half dozen of the other” situation, but it doesn’t have to be that way for everyone.

I don’t regret anything I’ve done (or not done) in my life but if I had to give any advice to someone else who can identify with some portion of my life, I have to say I agree with the advice that got my wheels turning when I thought to write about this.

You have to put more effort into what you want to maintain once your environment changes, social bubbles are great, but they don’t last forever; lay the groundwork when and where you can before it all poofs away.

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Cerebral Palsy: On Instagram

Inst@gram is the one platform I engage in I can’t keep organized at all, so bear with me. Because this is more of a hunt and peck venture.

@johnquinnspeaker

@adrianamallozzi

@cerebralpalsystrong

@traceytrousdell

@handicapthis

@birdonthestreet

@allison.cardwell

@yourcpf

@frompatienttopt

@mcarta7

@robynlambird

@fifiandmo

@sam_runs

@_watch_me_win

@cortney_jordan

@stevenmalinoski

@t_malone3

@tajias.journey

@cerebral_palsy_bmx_rider

@stephthehammer

@ptwithcp

@theablefables

@eyelinerandempowerment

@notorious_srg

@kreationsbykittles

(once again this is only a partial list)

Cerebral Palsy: On Twitter

When I joined Tw!tter I wanted to do the same thing I did with blogs, keep a running list to keep tabs on. It’s been easier in a sense but harder in one way in particular, it’s harder to share in a public forum.
(Note: this will not be a complete list)

@htlcy

@JohnWQuinn3

@PalsyVibes

@ALifeOfTriumph

@mylifewith_cp

@BlogbyAilsa

@phmcdonald65

@RevivoNeurology

@sgb6s211

@Simplysweetmaya

@MyCPNOW

@LoveandAccess

@smithsholiday

@AilsaSpeak

@zakfordwilliams

@CaraVlogsYT

@Gav_DrysdaleRR

@CP_honesty

@whippingCP

@NikkiRosaC

@Sbennett_UCP

@MorethanCP

@mykidwontsleep

@adversitywithin

@ImNotKardashian

@The_CP_Swagger

@DisabilityPsych

@BreezyMisha

@TismeRick

@CP_Matters

@Imogens_Wish

@dantin_brooklyn

@Sask_Leafer

@NOJFoundation

@LancePounds

@ShealyDanielle

@Mamahontas

@LindsMRoach

@JeffersFj

@SupportingCP

@SITS_07162013

@justjen03

@CPCanadaNetwork

@Jenny_McShane

@mkutch

@CPInspiration

@CP_Shoes

@LCarterLong

@katethemuse

@carolsblessings

@maysoonzayid

@Robyn_lambird

@CPTeensUK

@cpdailyliving

@AdrianaMallozzi

@Timmmyy_Le

@HandicapThis

@traceytrousdell

@katycpstrong

@LoveThatMax

(Complete list)

Growing Up Disabled

Some people don’t like to admit it but there’s a difference between how people treat people who were born disabled verses those who became disabled as a result of injury, age, luck, etc. (I won’t go into the differences. I just wanted to point it out for further context).

Since people are born with Cerebral Palsy it can create an interesting set of challenges. One being that people we grew up around get so used to us that it’s almost like they forget that we’re not able-bodied.

Because Cerebral Palsy is a brain injury that effects movement and coordination it also effects the day to day lives for those who live with it. It’s not something most people who have Cerebral Palsy consider on a daily basis, or even on an occasional basis, because it’s not like we’ve lived a previous life that we can compare our current one too.

I was the one who knew how long it took me to get to every one of my classes in college. If I left somewhere 2 minutes late to get to class, I knew I had a higher likelihood of being late than my classmates. Because I can’t “just walk faster,” to make up for lost time.

I’m the person that lays out their outfit for the next day (or longer) because I can’t just throw my clothes on and walk out the door. I’ve often gotten trapped in a pant leg or sleeve because of one wrong move. And the faster I move the more likely I am to get slowed down by the most basic thing.

And then there’s shoes, if you wear AFOs (or even just one) it’s not that easy to get your foot into a shoe. It’s something you get used to, to the point where you don’t really consider how long it takes you, unless you compare yourself to someone else’s ability to do the same task.

Then there are the times when friends are waiting for you, for what feels like forever, and you know that they’re waiting for just you.  Or even worse encourage you to “hurry up” because they’re excited to embark on your plans. Do I really have to explain (again) that I can’t “hurry up”?

Growing up disabled is an ongoing process, especially if you have Cerebral Palsy (or any other disability typically associated with children). It’s not just something you have to come to accept but your family and friends have to go through a similar process as well.

Back To Basics

I’ve covered these next few questions before, some more than others, but I wanted to do it again because 1) I was asked and 2) it’s always good to go back to basics.

CaraQs1

What is Cerebral Palsy?
Cerebral Palsy is “a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to non-progressive disturbances that occurred in the developing fetal or infant brain.” (Hat tip to Wikipedia)

Is it something you’re born with?
Most cases of Cerebral Palsy are congenital, meaning it happens during pregnancy, labor or delivery but some can be acquired during the first few months of life.

Does it show up as you develop from a baby to toddler and so on?
There’s no one size fits all testing for it but signs of it often show up in a baby and more signs present themselves through toddlerhood. Typically, it’s diagnosed in the first two years of life, although a rare few get diagnosed as pre-teens.

Are their different forms of it/does it manifest differently person to person?
There are 4 main types of CP: Spastic (the most common), Dyskinetic, Hypotonic, and Ataxic or it can be mixed (meaning having more than one type. It can affect one limb, usually an arm (monoplegia), one side of the body (hemiplegia), one half of the body, legs or arms, (diplegia), three limbs (triplegia), or all four limbs (quadriplegia). It effects each person differently, meaning no two people with CP are affected in the same way.

Is it more prevalent in one demographic vs another?
It is more common in twins (triplets, etc.) than singletons. It is also more common in Blacks than Whites and Hispanics, according to the CDC. It is more common in lower income areas and poorer countries as well.

Does gender play a part?
CP is more common in boys than in girls, according to the CDC.

Have there been any major scientific advances in recent years regarding diagnosis or longevity (or anything in between)?
I’m going to say it depends on who you ask to answer this question. There were plenty of treatments that were common place, 10, 20, 30 years ago that aren’t used anymore, while some are making a comeback. There is a lot of research going on now about improving medical care for people with CP as they move through the lifespan.

Is there limited life expectancy?
From CP itself, no. However, it is fairly common that people with CP have other medical conditions that could shorten one’s lifespan.

If not now, was there ever?
It’s difficult to find a clear answer to this one but I’m going to say that there probably used to be a shorter lifespan given the history of medicine and healthcare systems. Lifespans are longer than they were 20, 30, 40, years ago thanks to medical advancement for people with and without chronic medical conditions (a good example is Cystic Fibrosis) so I’m going to assume it’s the same for people with CP.

CaraQs2.jpg

When did Cerebral Palsy first get a name and when was it discovered?
Cerebral Palsy was first referred to as Little’s Disease in the mid-1800s. It became known as Cerebral Palsy in the late 1800s. It is believed that the first evidence of Cerebral Palsy dates back to ancient civilizations, Greeks, Romans, Egyptians, etc.

How does it affect one’s everyday life?
It depends on the person and it depends on how they measure the effects on their everyday life.

Does everyone with CP suffer massive amounts of pain?
Chronic pain is a common symptom, but not necessarily massive amounts of pain.

How does one cope with it?
It depends on the person, it’s not uncommon to manage pain with medication and physical therapy/exercise.

Are there alternative/ not traditional therapies like acupuncture, herbs, etc?
Yes. There are plenty of alternatives (most if not all) not covered by insurance. However, I cannot personally speak to their effectiveness, or lack of.

Have persons with CP used medical marijuana to aid with symptoms?
I do not know anyone personally, but I have heard of people who have CP who use it, although I’m not sure if it’s to treat effects of CP or other comorbidities (like epilepsy) that they may have.

Cerebral Palsy Awareness Month: 2019

If you follow me on social media you can probably guess what I’m going to say because I’ve been posting annoying Inst@gram Stories and tweets on Tw!tter for the past month.

Today is the start of Cerebral Palsy Awareness month.

I’ve done this before, and I want to do it again.

I’m going to write a series of posts pertaining to Cerebral Palsy, but I need your help.

What do you want to know?

What questions do you have?

What have you heard, that could be fact or fiction?

What do you know about Cerebral Palsy?

What do you wish you knew, or even had the slightest idea about?

What do you wish other people knew about Cerebral Palsy?

What would you like to share about living (and/or working) with Cerebral Palsy?

I know parents of kids with CP & young adults with CP read my blog. Both groups have questions and opinions (I would too if I were in their place).

I may not have all the answers to every question or myth that there is out there, but I believe I can provide guidance and provide inroads.

I’ll be the first one to tell you that I’m not in expert in Cerebral Palsy, but I do have live experience to draw on, and that’s not something I take lightly.

I’m open to feedback for the entire month, so if you can’t think of anything right now never fear there’s still 20-ish days that need material (just contact me).

September: A Recap

This is going to be an attempt at a recap of the past 30+ days. I say attempt because I’ll probably forget something or get the order of events wrong.

Blogging: I haven’t done much, obviously. I intended to make some sort of cutback, but I never made a solid plan. I would sit down to write and not finish anything, and then it just became more natural to not write anything. I needed a break more than I thought I did. I’m not sure if it will continue or not but I’m pretty sure I’ll have peace no matter what conclusion I come to (or stumble towards). I have no idea how I kept up a blogging schedule with full work and school schedules.

Social Media: Every morning I (usually) lay in bed while checking email and scrolling social media. One day I found myself wondering why I followed some people because I found myself on an emotional roller-coaster that I had no intention or even interest in being on, yet there I was. The end result was going through all of the people I follow and unfollowing a good number. I can’t say I feel better, but things feel more manageable.

Books: I’m enjoying making use of public resources, and my bank account appears to be thanking me for it. I have slowed down my reading consumption but I’m still going at a somewhat steady pace. After checking out the wrong book, not once but twice, keeping up to date on Good Reads has become somewhat essential.

Clothing: I have a dwindling wardrobe, on purpose. I was looking for a pair of pants in my closet, and similar to what happened with my social media accounts, I ended up donating half of the pants I owned. I don’t know why I had so many pants because I think I only wear 3-4 pairs on a regular basis. The same thing happened with my sweaters soon after. I’m hoping this trend occurs with the rest of my possessions. Why did I feel I needed so much, because I clearly don’t need most of what I have even after a purge?

Ministry (or whatever you want to call it): I’m still working on my capstone project, even though it’s not really a project anymore. It hasn’t gained the traction I had hoped for and granted I haven’t been able to bring what I had in my head to the web, but it doesn’t feel right to just let it go.

Christmas: I have a fair amount of my shopping done. I don’t claim to be one of the “Christmas crazies” that enjoy starting the countdown to the big day in July, but I find it much easier to have a “shop as you go” approach to gift giving, rather than scrambling for the perfect gift closer to a deadline dictated by a calendar.

Work & Career: This could probably be two separate things but I’m making it one. I’m on the job hunt still writing cover letters and sending out my resume. Things are happening slowly but surely, and that’s fine with me. I made the decision to stop accepting speaking and educational engagements that don’t offer some sort of compensation. I can’t live solely off warm fuzzies an thinking I’m making the world a better place, so I needed to stop doing it.

Friends: They’re all off being amazing and doing amazing things, like this one, so I’m watching things happen wherever I go.

Podcasting: I’m considering a return of sorts so stay tuned, if you’re interested. I am listening to more podcasts, most notably The Catholic Family

Swimming & Other Physical Pursuits: The short of it is, same coach different environment. It’s been an adjustment, and a bigger one than I bargained for so I’m trying different things, for the sake of motivation, until something clicks. I have no idea how professional athletes change coaches and or environments semi-often and seem to not miss a beat.

So that was September. How was your month? Did I miss anything that I should have covered?

Grad School: The 1st Summer After

It’s the first summer of my post-post-grad life. The summer of dreamed of for years has come and is almost over. No, I’m not going back to school, at least not yet. Things haven’t gone how I thought they would. I’d be lying if I didn’t say keeping up this blog is getting harder and hard to do, not because of lack of time, but lack of motivation.

I thought not having school would free my mind, give me the free time I missed, etc.

Lucille Ball was quoted as saying, If you want something done, ask a busy person to do it. The more things you do, the more you can do.”

I think there’s some truth to this, although not the total truth.

I feel like I could get more done in a day then than I can now, even if I can set my own schedule more often these days.

If you follow me on Inst@gram or Tw!tter you can probably guess what I’ve been doing with my self-controlled schedule.

Perhaps getting back into everyday life is more than I bargained for. Perhaps my brain just needs to rejuvenate and heal, yes heal.

Maybe having more to do meant that I had more to write about.

Whatever the reasoning it’s caused me to reevaluate my blogging and social media practices, again.

I’ve been trying to put together my post-post-grad life, because it’s not something that just falls into your lap, unless you’re incredibly lucky, it’s something that needs to be built, and then crafted.

Things have been changing in my life and it only makes sense that other things will follow. It doesn’t matter what I thought the long game would be when I have to take into consideration what the long game looks like it is now, rather than what I wish the long game looked like.

On Dignity & Disability

I’ve been told that it’s a good idea to set up internet alerts to keep up with the news that may interest me. While I think it’s a good idea and I have come close to doing so on more than one occasion, I’m glad I don’t have any of it. There are plenty of days when I want to pull the plug and throw my computer out without additional influence. Can you image what would happen if articles ended up in my inbox the second they were published? No thanks.

Over the last few weeks there have been a few articles that have grasped my attention and just won’t let go (and raised my blood pressure exponentially).

Please note (and respect) that I will not be linking directly to or mentioning any specific details of these articles. I’m choosing to use my “linking power” wisely.

I’m not expert on dignity but it’s been a recurring topic in my continuous inner dialogue lately. What is it? How does one achieve it? How should you go about protecting it? I think you get the idea.

The issues surrounding dignity or lack thereof and disability are really starting to get to me. I’m not the most diplomatic person (read: at all) & I have a temper, so my first reaction is usually anger and it takes me a little time to get my thoughts out so someone else can know what I’m trying to say and want to listen.

Dignity in regard to disability is not a new frontier. However, it is one that needs exploration by the able-bodied (and those related in any way to someone with a disability). It can be a tricky subject to approach in mixed (ability) company; it probably has something to do with sympathy vs empathy, or other similar topic.

I remember the first article I read that made me question how people saw dignity for people with disabilities. It made me so angry I just sat on my feelings for a while, because I wasn’t “into” being a disability advocate then so throwing my feelings out there would’ve been shocking to everyone. I kept my feeling to myself, mostly, but it’s never left my mind.

I’m pro a lot of things but I draw the line somewhere before preforming medical procedures to stop individuals from growing up, literally, because someone going through puberty and adulthood are more difficult to care for.

It’s a fact of life, disability or no disability. There shouldn’t be a separate set of rules for those with disabilities. That’s the exact opposite of what so many people fight for.

If the same thing were to happen to an able-bodied person masses of people would be up in arms and it wouldn’t even make it in front of an ethics board, never mind be approved by an ethics board.

Let’s not even discuss what would happen if a child were to ask to stay child-sized forever, because I think we can all guess what would happen.

One area I tend to struggle with my thoughts the most is in an educational setting. I’d like inclusion for all, of course, but there are situations when I wonder if it’s really possible. I’m against self-contained classrooms mostly but I’m not completely against them. If you want to reinvent the mold for your child to fit into the mold that’s fine, but not at the expense of other children, that’s not OK. A child needs to be given the best environment to flourish in the long term.

Creating a short-term solution and hoping that it “just might” evolve into a long term plan is not only irresponsible but further proving the long held myth that people with disabilities are handed opportunities because they can’t afford them for themselves.

Let’s not forget about a certain photo controversy that’s become a virtual powder keg of opinions.

To be clear the differences of opinion are with the photo. I haven’t read a single comment from someone with a disability who has a favorable opinion of the photo. At the same time the majority of positive opinions have come from parents (or caregivers etc.) of a child with a disability. While both groups (PwD & parents, etc. of PwD) are part of the disability community each comes to the community with a different point of view.

I will not be talking about the point of view of parents, etc. because I am not a parent and I am not close enough to “the etc.” to be able to speak on it effectively.

Speaking as a person with a disability I can tell you that the photo was an immediate turn off. I’ll often read articles even if the photos turn me off the subject. I’m a visual person so I understand the value of a well-placed visual, whether positive or negative. Sometimes I have to “override” first instinct and give something a chance. However using this particular photo was foul play on the part of journalists and parents.

Just because you’re OK with complete access (and/or are given it) doesn’t mean it’s OK to take advantage of it.

How many pictures have sparked controversy because a parent posted it online? Pictures of able-bodied minors in a diaper or even a questionable outfit are posted every day and someone somewhere always had an unfavorable opinion of it. And if the backlash is big enough social media accounts are suspended.

Why isn’t the same courtesy extended to an older individual who cannot speak for themselves just because a relative or caregiver gives the OK?

And what would happen if someone who could speak for themselves is perfectly fine giving a journalist full access and a similar photo was used? I doubt people would have a similar reaction. In fact I doubt a photographer would even take such a picture.

I’m going to take it one step further (maybe a step too far even). Child predators toll the internet 24/7 looking for images of people, most of them are seemingly innocent images.

People get upset and “cry porn” if a mom posts a picture of a three-year-old proudly wearing her “big girl underwear.” Yet it’s a “beautiful image” to see a disabled 16-year-old wearing nothing but a diaper.

Isn’t this a double standard?

I could probably go on and on with more examples, in fact I know I could, but I’ve said enough, for now.

A friend said things better than I ever could, “because disability is involved, we accept the notion that disability means less-than-human. We must remember that a person is a person, no matter their abilities. Everyone deserves to be presented to the world around us in a manner of dignity and respect.”(source)

*A similar version of this post was written on July 29, 2014

Revisiting: The Roll Call

Since I’ve been musing about the possible death of blogging and the importance of not overstepping boundaries when it comes to storytelling I thought it would be a good idea to revisit (and then repost) the database of Cerebral Palsy related blogs, with a few vlogs thrown in.

It’s worth noting that many of these blogs haven’t been updated in years and are written by people who have family members who have CP, both facts that bring to light my previous points. However, they all have content worth looking at if you’re interested in getting to know a few individuals that make up the CP community.

This same list will be updated and expanded on an as needed basis here.

A Life Less Ordinary

A.J’s Awesome Adventures

A Place To Write Things

A T-Rex Life (Videos)

A T-Rex Life: Cerebral Palsy And Me

About The Small Stuff

Adapted World

Adventures In Mattyland

Amazing Amelia

Amazing Syafiah & Co

An INFJ With CP

And The Wheels Keep Turning

Andersen Family Blog

Ayla’s Rainbow Connection

Better Than Normal

Bird On The Street

Brace Yourself Declan

Brendan’s Life With Cerebral Palsy

Brielle and Me

Bringing The Sunshine

Caleigh’s Corner

Caneable

Cerebral Palsy Baby

Cerebral Palsy Daily Living

Cerebral Palsy Family

Cerebral Palsy Mamma

Cerebral Palsy Soccer

Coley’s Corner

CP Shoes

Cracks In The Pavement

Crip Video Productions

Dealing With My Life With CP

disABLED guy

Do It Myself Blog-Glenda Watson Hyatt

Drake And Lulu

EMDeerx Muse

Endless Jubilee

Finding My Way: Journey Of An Uppity Intellectual Activist Crip

Following Elias

Free As Trees

Gas-Food-Lodging

Hannah’s Adventures of Living Her Dreams

Hanpike

Henry’s Heroes

How Life Happens

I Heart Milo

I Will Skate

In Bloom

In My Eyes: Life With Cerebral Palsy

In The Words Of A Green Giraffe

Insights From The Sidelines

Isla’s Journey

Jake Olver (Videos)

Jentry Holthus (Videos)

John W. Quinn (Videos)

Journey With CP (Videos)

Jude, The Diary Of A Baby and A Stroke

Jump In For James

Kaitlyn’s News- Living A Happy Life With Cerebral Palsy

Katherine Hayward, My Life With Cerebral Palsy

Kelsey Can

Kendall’s Hope

Kristen’s Life With Cerebral Palsy

Lieck Triplets

Life And Family, Steve Wampler Is Living With Cerebral Palsy

Life In Holland

Life With The Loraines

Living My CP Life (videos)

Love That Max

Making My Mark

Mark Henry

Massagermommy

Mattes’s Madness

Micro Preemie Twins: The Story Of Holland & Eden

Miss Charlie

Missy’s CP Journey

My (dis)Abled Life

My Life With CP (Videos)

My Spelling Sucks

Nich Vaughan

No Superhero

Off Balanced

One Day At A Time

Our 3 Little Miracles

Outrageous Fortune

Painting For Hailey

Premeditations: Reflections On Preemie Parenting

Riley’s Smile

Rob J. Quinn

Ryn Tale’s Book Of Days

Sammy’s Walk Through Life

Smith’s Holiday Road

So… How Did You Break Your Leg Then?

Spashionista Report

Speak Up, Sit Down

Special Momma

Stories With Sam

Team Aidan

That Crazy Crippled Chick

The Blessing Counter

The CP Diary

The Deal With Disability

The Fabulous Adventures of a Four-Legged Woman

The Galli-ringo Family

The Girl In The Wheelchair

The Grappler Within

The Nest

The Writer

Three Chocolate Brownies

Tonia Says

Trailblazing With CP

Trousdell Five

Tutti Frutti

Twingle Mommy

Unexpected Lessons

Updates on Lewis Jack

Verses Of Vaughan

Victor’s Smile

View From A Walking Frame

Welcome Blessings

Welcome To Elijahland

Wherever He Leads We’ll Go

Writer In A Wheelchair

Zachary Fenell (Videos)