World CP Day

Cerebral palsy (CP) is an umbrella term encompassing a group of non-progressive, non-contagious motor conditions that cause physical disability in human development, chiefly in the various areas of body movement.

Cerebral palsy describes a group of permanent disorders of the development of movement and posture, causing activity limitation, that are attributed to nonprogressive disturbances that occurred in the developing fetal or infant brain. The motor disorders of cerebral palsy are often accompanied by disturbances of sensation, perception, cognition, communication, and behavior, by epilepsy, and by secondary musculoskeletal problems.

CP, formerly known as “Cerebral Paralysis,” was first identified by English surgeon William Little in 1860. Little raised the possibility of asphyxia during birth as a chief cause of the disorder. It was not until 1897 that Sigmund Freud, then a neurologist, suggested that a difficult birth was not the cause but rather only a symptom of other effects on fetal development. Research conducted during the 1980s by the National Institute of Neurological Disorders and Stroke (NINDS) suggested that only a small number of cases of CP are caused by lack of oxygen during birth.

Types Of CP:
Ataxic
Athetoid/dyskinetic
Hypotonic
Spastic

All types of cerebral palsy are characterized by abnormal muscle tone, reflexes, or motor development and coordination. There can be joint and bone deformities and contractures (permanently fixed, tight muscles and joints). The classical symptoms are spasticities, spasms, other involuntary movements (e.g. facial gestures), unsteady gait, problems with balance, and/or soft tissue findings consisting largely of decreased muscle mass. Scissor walking (where the knees come in and cross) and toe walking (which can contribute to a gait reminiscent of a marionette) are common among people with CP who are able to walk, but taken on the whole, CP symptomatology is very diverse. The effects of cerebral palsy fall on a continuum of motor dysfunction which may range from slight clumsiness at the mild end of the spectrum to impairments so severe that they render coordinated movement virtually impossible at the other end the spectrum.

CP is not a progressive disorder (meaning the brain damage neither improves nor worsens), but the symptoms can become more severe over time due to subdural damage. A person with the disorder may improve somewhat during childhood if he or she receives extensive care from specialists, but once bones and musculature become more established, orthopedic surgery may be required for fundamental improvement. People who have CP tend to develop arthritis at a younger age than normal because of the pressure placed on joints by excessively toned and stiff muscles.
(information taken from Wikipedia and reorganized/edited by me)

Why am I telling you all of this?

Because there is no cure for CP.

But I have to be honest that’s quite fine with me, most days anyway.

That doesn’t mean there can’t be a collective of sorts. Stats are one thing.

Personal stories are another, and even better.

Which is why I collected all the personal stories I could find and put them in one place.

If you have a CP blog, have one that you like, or just know one, leave a comment with the URL

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Review Session

I’ve been riffling through my past writings, for various reasons. I can’t say it’s been all fun rereading everything but it has been interesting.

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Two years ago I was pre-surgery*

One year ago I was post 1 round of Botox*

*I did indeed have to search the archives to remember this

This year the MDs & Ph.D.s are pretty much hands off.

Progress indeed.

Things aren’t prefect.

But a CP body isn’t your typical definition of perfect.

“It doesn’t get easier or harder. It just gets different.”

The idealistic picture I had in my mind two years ago is a distant memory. As in so distant I barely remember the picture, other than I had one.

The real picture is coming into focus.

I’m sure there are things that could use fixing. In fact I know there are. They’ve just been put in the “wait and see” category, and it looks like they’ll be staying there.

Do I want them fixed?
Of course.
But I don’t know how much difference it’ll make overall.

Plus I’m in pretty awesome physical shape.
Going in for more work would mean “tearing down” my hard work.

That’s the biggest negative for me.
Further improvement would come at a cost.

I’m not 100% with how things are.
I’ve made that pretty clear to a lot of people.

But who is really, truly, honestly happy with themselves 100%?

Even if I can still see room for improvement that doesn’t mean I have to bow to the surgical gods for it.

A big revelation for me I admit.

I can manage my own trajectory.
Modern medicine will always be there.

*A similar version of this post was written on September 2, 2011

On 2 Years

8 years ago my life was at a turning point in my life. I had been in pain for so long and I couldn’t take it anymore. I had to do something about it. 2 years out I wrote about the progress after the turn. I thought I would see my life more differently 8 years after than I would 2 years later, although there are a few things that are different now the general sentiment is pretty much the same.

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A lot of people see scars as defects, at least detection of defects.
I look down at my scars and see differently.

Improvement.
Teamwork.
Hard work.
Skill.
Courage.
Faith
Obedience.
Accomplishment.
Risk
Hope

Just to name a few.

It took a long time to even get to that point 2 years ago.
Lucky for me there are times I’m like a dog with a bone.
Although I did feel like quitting plenty of times.

All I wanted to do was be who I was.
Rewind the clock.
Not be in constant pain.

It didn’t even occur to me that a fixed body would mean possibility & ability to actually become better. Even when the idea was presented to me I had my doubts, actually I didn’t think it was possible, just someone being hopelessly optimistic.

To borrow a line from Soul Surfer, “I don’t want easy, just possible.”
Well someone did, it just wasn’t me.
I was just waiting until I felt back to normal.

But when I wasn’t paying attention I was getting better.

Climbing up stairs without pulling myself up or using a handrail
Stepping off a curb
Being able to dress myself without falling over
Jumping
Walking backwards & sideways
Stopping at a street corner before crossing
Finally learning to walk with my heals with some consistency

All things most people without much thought at all.

It took a lot to get this far:

1 failed Baclofen trial
10 hours of surgery
Months of PT
Months of Pilates
Self-motivated pool sessions
Weekly one on one gym sessions
2 rounds of Botox

But I did it.

Everyone kept telling me the hard part was going to come after. I have to say they were right, as I’ve said; two years ago, the hardest thing I had to do was take a 10 nap while everyone else either worked or waited on me.

“We’re done,” meant “Your turn kid.”

But like the getting better part, the hard part happened when I wasn’t looking.

As Hemmingway wrote in, The Sun Also Rises, “Gradually, then suddenly.”

If I did this, what else can I do?

*A similar version of this post was written on September 13, 2011

Brain Matter(s)

I remember my 1st meeting with my physiatrist. I didn’t want to be there. I had already seen a physiatrist I liked. I was only there because she wanted me to consider having him take me as a patient instead, but he was on time (not doctor time, actual people time) and he seemed to wanted to be interested in all of me, not just parts.

After his “litany of questions” (which is really what he called it) he said something that caught me off guard.

“Now if I were to look at a CT scan of your brain I guess I would probably see……”

I never put much thought into what Cerebral Palsy had done to my brain, mainly because the focus had always been on my muscles & bones, I wasn’t diagnosed with a learning disability until my early 20s & even then I didn’t think it was CP related, learning disabilities are in my family so I saw it as something that made me more “alike” than different.”

Admitting that this postulating what my brain looked like was what sealed the deal in agreeing to be under his care would be a lie, but it did play a part in my decision.

I haven’t had many CT scans in my life, and only one of my head, but they were looking at my sinuses, not my brain. Intrigued I asked if he would be ordering a CT scan of my brain, adding that I wanted to see it for myself.

No

Why?

Well OK then.

For the record, I still want to see what my brain actually looks like.

It’s hard to understand a condition that you can’t always see the root cause of, never mind try explaining it to anyone else, no matter how educated you are on the subject.

People like to be able to see things, to touch them, hear them, anything tactile really.

Cerebral Palsy isn’t like that, instead it’s like trying to find the leak in a pipe. You have a puddle on the floor from the water dripping from the ceiling but you don’t really know where the water is coming from, except with CP you may never be able to actually see the true source of the leak.

About Abandonment

One of my favorite posts from another health advocate comes from Jessica. Although the post deals with illness almost all of it can apply to living with a disability as well, probably because there’s a misconception that disability is similar to being sick.

2016-11-25

Read Jessica’s full post.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

A CP Glossary

Being a minority of a minority people come to me all the time for advice, suggestions, etc. I know a lot about CP because I’ve sought it out, partly because people were seeing me as some sort of expert, but I’m not really. It’s hard to boil everything down to one page for the newly diagnosed when Cerebral Palsy is also unique to the individual. However, I received a comment to create a glossary for readers of terms that I often will use an acronym rather than spell out. I’m sure I’m forgetting a lot of them but here are the very basics.

Cerebral Palsy Related Terms

CP- Cerebral Palsy

GMFCS- Gross Motor Function Classification System

SDR- Selective Dorsal Rhizotomy

PT- Physical Therapy

OT- Occupational Therapy

ST- Speech Therapy

SpEd- Special Education

IEP/504- Individual Education Plan

Physiatry (or PM&R)- A specialist of non-surgical physical medicine for people who have been disabled

Orthotist- A maker/fitter of orthotics (bracing)

AFO- Ankle Foot Orthotics

KAFO- Knee Ankle Foot Orthotics

SMO- Supra Malleolar Orthosis

DAFO- Dynamic Ankle Foot Orthotics

Monoplegia- One limb effected

Hemiplegia- One side of the body, usually two limbs, are effected

Quadriplegia- Effects all four limbs of the body

Diplegia-Effects the lower body

Triplegia- Effects three limbs of the body

SLP- Speech Language Pathologist

AAC- Augmentative & Alternative Communication

Other Useful Terms

CF- Cystic Fibrosis

SB- Spina Bifida

DS- Down Syndrome

LD- Learning Disability

EDS- Ehlers–Danlos Syndrome

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Changing The Healthcare Landscape

Asking a professional patient to name one thing they’d like to change about the current healthcare landscape can be like pulling the pin on one big grievance grenade.

Although I would like more of a community for people over the age of 18 with Cerebral Palsy I’m going to go with something more general and seemingly smaller, but it is one of my biggest frustrations.

Office staff.

There’s the Joint Commission for healthcare organizations.

There’s standards for doctors.

And nurses.

Why not office staff?

They make offices run. They’re invaluable people.

Some know this and use this to their advantage, others don’t seem to have a clue, or maybe they just don’t care.

I’m not saying I’ve left the care of a healthcare provider because of their office staff, but I have thought about it, more than once.

I think maybe there will be a time when that will happen, it just hasn’t happened yet.

If I could change one thing about the healthcare landscape right now, it would be to have some sort of organization that handles the oversight of the assistants of healthcare providers, because although they aren’t in themselves providers they do play a major part in patient care.

They aren’t just handling files and scheduling appointments. They’re handling a person’s life, especially if it’s someone who has a disability or chronic illness.

They aren’t just dealing with annoying people. They can be the lifeline between provider and patient.

I don’t need someone who gets over involved in my care, blurring the lines of professionalism but someone who at least attempt to acknowledge that I can’t just drop everything for an appointment.

Simply put, someone who reads all the information put in front of them before scheduling an appointment (for example).

When someone is rude, or downright mean or neglectful, I wish there was someone, someplace, to report them to. It isn’t a position with minimal consequences if mistakes are made. It can’t be “just a job,” when you’re working alongside people who hold the lives of others in their own hands.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Highlights Of Activism

Being an activist can be a thankless job. Sometimes it can feel like you’re doing a lot of work for very little return. Many activists spend hours upon hours, of their free time, pouring themselves into projects and passions for no money.

I fell into the life of an activist completely by accident, but I stayed in it because of passion I have for it.

A friend of mine had to write a paper, and decided that I should be the main subject. I wasn’t expecting anything to come of it, but I did ask for a copy.

During a clinic visit I happened to mention the paper to someone and they asked if they could read it. I’m sure more than just that one person read it because during the visit after a few people seemed to know about it.

I was asked to speak at the next conference, and that started it all.

I knew there wasn’t a lot of information out there about people like me for people like me but I was hoping someone had it.

In reality, no one has “it.”

People have pieces, but even when you put all the pieces together there’s not a whole picture.

For a disability that’s been around for centuries people, doctors included, are just getting to the point where adults with CP are being recognized.

We haven’t been able to get adequate medical care, even if we are disabled enough, because there are few medical studies for the demographic.

A few years ago, there were no studies, at least not reliable ones.

There’s progress.

It’s just really slow.

There has been no one highlight of this journey because it seems like everything is a highlight in some respect. Although it can be a thankless job when the “thank you”s do come it’s pretty awesome, they make it all worth it.

It also helps to take the long view, seeing the good that’s done as a whole, rather than seeking out short term goals, getting what you want/need with little regard for the whole.

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

Please Get Out Of My Kitchen

I was supposed to write an open letter to my worst (or best) healthcare provider but I’m going to do something a little different for two reasons (1) it’s been an interesting few weeks with my and various provider offices and (2) I can’t find the post I thought I had already written on the subject.

Instead I kept coming across a different post that expresses a similar sentiment but better than I could have done in letter form (at least that’s what I think).

I wrote this after yet another appointment that left me frustrated and defeated. I was also somewhat younger than I am now, yet I don’t think I would’ve done a thing differently if I was in the same situation now (although I don’t think I would’ve had the choice either).

I was still months away from one of the biggest days of my life (so far) after waiting months to just to get to the point where I was months away from one of the biggest days of my life. It wouldn’t be an understatement to say that the waiting had pretty much consumed my life.

Looking back on this, since I have a lot of it in writing, I can’t believe I actually lived through this, and I mean that literally. You know the saying, “when you get to the end of your rope tie a knot and hang on”? The knot was getting loose.
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Technically I’m still under the care of two surgeons and technically two will be performing my surgery, but I haven’t met that second guy yet. Although I do consider one mine and the other just an extra opinion, and no I won’t say who is who, mamma didn’t raise no dummy.

Plans for surgery are still full speed ahead, although not necessarily very quickly.

Even though the plan hasn’t changed I still have plenty of time to get more opinions on the subject, whether I like them or not.

I recently went back to the surgeon that wanted a lock strap put on my AFO because he thought it would help my crouch, just to see how I would like it (I hated it, and so did everyone else, except him). We had an interesting discussion. Now he says he would do surgery, but not to the extent I’m planning on. He told me it’s basically my decision, but he would only do surgery on my right side, because the left side doesn’t look bad to him (even though test/studies say otherwise).

He also expressed concern about my age (AGAIN!). In case any of you are wondering 25 in the CP world is pretty much the equivalent of retirement to a nursing home.

How the conversation usually goes:

“You’re not a kid anymore.”

“I know.”

How I’d like the conversation to go:

“You’re not a kid anymore.”

“I know I’m not a spring chicken, but can we please get past that.”

“Sure.”

Is that so hard?

At least Dr. who-I-hope-will-do-my-surgery-says, “You’re older than the oldest patients that have had this, but only a little.”

O.K. not the most positive thing, but still more positive than what I usually hear from other doctors. I’ve also heard, “I’d like to help you, but I don’t see anyone over fourteen,” of course this was after I’d been in his office for over an hour. Nice right?
(Although I do like the guy so if you’re in the area and need an orthopod for your kid let me know)

Dr. “You-know-you’re-not-a-kid” also expressed concern that it would be a long recovery and the surgery itself would be fun for him to do but rather painful for me. (Because I wouldn’t think of such things on my own, and I haven’t thought of that for months) He also said I’d be “stuck here” for a while so if I wanted to go away again that would be out of the question. Recovery would be twice as long, 12 months instead of 6. He finished with, “If you do this, this will probably be it for you.”

I don’t think I need to go into how much is wrong with those statements from my point of few, but I want to anyway.

1) I’m already in constant pain so intensifying it for a while is worth is if there’s even a chance I could be in less pain, or pain free, once recovered.

2) I’ve thought about how hard and painful recovery is going to be. I’m not stupid, Nor am I afraid of pain, surgery, or intensive PT. I’ve done it before and I can do it again. I retained my entire body to do things people take for granted at 3. I think I can handle it at 25.

3) I want to do this so I have a chance at going away again, and hopefully out of the country at that. I’d rather be “stuck here” for a while instead of “stuck in a wheelchair” in five years.

4) I feel so bad now there a good chance I’ll feel better sooner than a full recovery of 12 months. There’s a reason why it’s a projected 12 months and not a definite 12 months. He of all people should know since I recovered faster from my last surgery faster than he anticipated.

5) Let’s let advances in medical science and I decide what’s “it” for me, thanks.

But it’s in my head now, should I just have surgery on my right side? The right needs more work anyway. I might just end up needing to have the same thing done on the left anyway. Should I take the risk of less?

My first instinct is to just have it all done at once and rebuild. It makes more sense and I’d rather do everything so we don’t need to go back and fix what we should have the first time. But now the other thought is there.

In addition to this new opinion, or rather changed opinion (?). I still have to get a second opinion, at the request of the surgeon who I’d like to perform my surgery. So I have one more opinion coming my way, at least.

I’m slowly coming to terms with the fact that my surgery is scheduled for fall. Actually I might even be starting to see this as the best thing. I realized I don’t want to be in the hospital in the summer, either type of hospital. I don’t want to be home on the couch without having the option to go out and enjoy the weather either. So if you remove the summer months from the calendar, that makes the time frame more manageable. Granted my thought process might chance in 5 minutes, as it usually done.

Have you ever heard the saying, “Too many cooks in the kitchen?” I’ve officially reached the point where I have too many cooks, and I’m the kitchen.

I have just one thing to say GET. OUT. & SHUT. UP.

*A similar version of this post was written on March 20, 2009

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.

The Other Kind Of D-Day

Here’s a thing about having Cerebral Palsy, most of us don’t remember our own personal “D-Day” (otherwise known as the day we received our diagnosis). CP is typically diagnosed in infancy or early childhood. Therefore, it’s rare anyone remembers their actual diagnosis.

Having CP (or a similar disability) it’s not D-Day that gets you, it’s the acceptance process, which has not clear beginning or end for most people. It can be a daily thing, or not.

Plus CP is unique to the individual so it’s pretty difficult, if not impossible, to predict what a person’s life will be like as they age with CP (plus there are very few studies that deal with people over the age of 18 with CP).

A few years ago, I was asked to write a letter to my younger self since the prompt for today was to write a letter to ourselves on “D-Day” I thought I’d look back on the first letter and see what still holds true to life with CP, even if it has more to do with acceptance & advice.

Dear Self,
You were not dreaming when you opened your report card first quarter of freshman year and realized that you FINALLY made the honor roll; just when you stopped trying and were going to a school that didn’t believe in the honor roll. Apparently, you’re going to take the “grades aren’t the end all and be all” approach right up to the line you promised yourself you’d never cross again. You should try harder, at least turn your assignments in (on time, or at all).

Pretty soon you’re going to have a conversation with your best friend that will make you laugh. What you really should’ve done is seized the opportunity for yourself. It’s not awesome when you know the administration is probably using you to help the school’s recruitment efforts without asking you first. But you shouldn’t have laughed it off so easily. Instead you should’ve looked for the potential opportunity in it. Who cares if you’ll only go to classes on average of 4 days a week your senior year?

You’ll carry the emotional scars from middle school with you forever, but you’ll continue to reconnect with grade school friends and realize you’re worth more than the girl piranhas gave you credit for. The good news is you’ll rarely ever see them again and when you do their lives look far from fantastic. Feel free to mentally gloat for a few minutes, you’ve earned it.

Also, you’re a little bit of a nerd. Own it. You’re with the free thinkers now, not the cookie cutter (alleged) “good Catholic girls.”

Having a gym locker once a year isn’t going to be as great as you think it’ll be. You’ll never get it open yourself. It’s not like you’ll have a lot of books to carry around anyway.

You’ve figured out by now that your mom went overboard requesting accommodations for you, and you’ve ditched them on your own. Luckily no one will press you on it since everyone (with the exception of the administration during open houses) sees you as typical and capable. Enjoy the feeling while you can, because it won’t last forever. In fact, your first year of college with feel like you’ve gone back to middle school.

Speaking of college, it won’t exactly turn out like you’re thinking but it will be even better. It’ll just have a rough start. You’ll just have to wait it out because you wouldn’t wish it to go any other way when you look back on it (speaking as your older self).

You’re already feeling the effects of “old age,” or so you think. It’s not normal to ice your knees every night when “all” you’ve done is go to school. I wish I could give you advice on how to change that sooner but I know you won’t listen either way. Luckily for you things turn around and you reap the benefits for years. So really things work out for the best in the end.

Finally, I’ll end with an old people line, “life is short, enjoy the ride.”

*A similar version of this post was written on April 28, 2014

I’m participating in WEGO Health’s Health Activist Writer’s Month Challenge. If you want to find out more about Health Activist Writer’s Month Challenge visit their blog, Facebook, Twitter. You can find more posts by searching #HAWMC.