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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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

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.

Spreading The Love

When you first start writing seriously you tend to look for others in your situation, or at least that’s what I did. When you don’t find any, or at least what you were looking for, you start looking at other health blogs for a “similar enough” community to try to emulate.

I found myself reading a lot of CF blogs, and learning a lot from them. I didn’t find everything missing from the CP community that I had been looking for but close enough. I wanted to connect with people in the CF community to see what I could learn and bring to the CP community.

For example: the issue(s) of transitioning from pediatric to adult care since CP & CF are both lifelong conditions that involve transitions.

It didn’t take long before I found Run Sickboy Run. It seemed like every CF blog mentioned Ronnie at least once. Clearly he was good at whatever he was doing.

I’ve been able to learn a lot about self-advocacy as well as blogging in general from Ronnie. If I can have a quarter of the impact on the CP community that Ronnie’s had on the CF community than I’ll consider it a success; because I don’t think I can even come close to what he’s done (like creating a social network for the CF community).

He’s also been kind enough to respond to my comments for him & leave his own for me. It’s truly something that makes a small time blogger happy. He’s also been nice enough to share his knowledge with me when one of my doctors brought up the possibility pulmonary function testing.

It’s from getting to know Ronnie though his blog (& guest posts by other CF patients) that I’ve found the type of community that people with CP should be a part of. In fact I’ve been suggesting to the professions since I started reading CF blogs that we should look to the CF community as a model for medical treatment; and believe it or not someone brought up the same idea at a CP conference.

Simply put, thanks Ronnie for all you do.

There are two other individuals I have gotten to know that blend health activism and everyday life well:

Jessica at Fashionably Ill & Sarah at Back To Carolina

They both show that professional patients are just normal people who just probably more familiar with their doctors.

*A similar version of this post was written on April 14, 2013

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.
____________________________

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.

When Normal Is Nice

If you asked me 6 months ago if I thought I’d want to be in a celebratory mood when December came around I would’ve had some kind of major emotional response, and it wouldn’t have been pretty.

The last year, particularly the last 6 months have been almost unreal. Aside from my (un)usual course load and near insane travel plans there has been a lot of navigating uncharted territory, and little of it was pleasant, or good.

I tried burying myself in work and school but it didn’t always work. There were sleepless nights, lots of questions, and even more tears.

One of the more notable things being sitting next to someone’s hospital bed rather than being the one in the hospital bed, normal people would consider that a good thing but coming from the point of view of a professional patient it was uncomfortable.

I was in uncharted territory.

I’m much more comfortable being the one in the bed than next to the bed. I think family, friends, and medical professionals would prefer it that way too. I’m pretty much a pain in the ass when I’m the patient but I’m insufferable when I’m the “family support” (and the fact that I can recognize that should tell you something).

I’ve had those uncomfortable conversations that people like to avoid, all over again, because if I’m ever back to being the one in the hospital bed. I want everyone within a 20 mile radius of my room to know what my wishes are, right down to how I’d like to be dressed, in the event I cannot speak for myself.

Then things changed, again.

What started as relief turned into a whole other series of questions, in the end I had to recognize that this was “the new normal” that people talk about so often; another uncharted territory that required exploring, and then accepting.

I thought I knew where I stood on a multitude of issues, but I was forced to reexamine my motives and change my position on more than a few things.

For example, I never understood how people could say that a loved one was “still there” after suffering a stroke or being diagnosed with dementia. Now, I’ve read My Stroke of Insight and many other books on neuroscience. Intellectually I understand that someone isn’t completely gone but I couldn’t grasp it on any other level, until I encountered it up close and personal.

And it’s amazing to witness (although, admittedly, not always easy).

Like so many others I’ve focused on the quality of my life over the quantity of my life (and then proceeded to project my thoughts onto others silently as well as out loud). It’s not so black and white. There’s a whole lot of grey in the in between that needs to be acknowledged, questioned, processed, and then accepted.

Allowing yourself to able to live in a normal, even if it is a “new normal” is nice, if you let it.

The Road To Recovery

More than a few years ago, and at the same time it feels like last week, I was lying in a hospital bed recovering from surgery (actually I thought I was dying but that’s a minor point at this point).

I was just beginning my road to recovery.

And having to answer the question, “Did it work” or “was it successful,” for those of your in the healthcare field.

I have to be honest. I’m never sure how to answer this question, especially since a lingering quad strain came into the picture.

Did it work? Yes.

Was it successful? Yes.

All major goals were met and there have been no complications as direct result of the surgery.

But did I get everything I wanted out of the recovery process? No.

I was warned that one of the outcomes of surgery would be uncovering weaknesses that were, in a sense, hidden by my miserable malalignment (yes that is indeed an actual medical diagnosis) and boy were they right.

Sometimes I feel like I have monoplegia instead of diplegia. Which you think would be a good thing but it’s more like my right leg feels more like an added after the fact limb (maybe like a prosthetic?).

Sometimes I feel like I have hemiplegia, because my arm is hell bent, sometimes literally, on trying to compensate for my leg.

I wish I didn’t have to stay in an AFO, never mind even go as far as to get a second one made. Sometimes I feel so defeated by this one fact alone, but it’s really just accepting reality.

I’ve had to adjust to taking prescribed medication on a daily basis. I’m amazed how hard it is to remember to keep up on refills and orders for more refills, for just one medication.

I have more trouble with some of the most basic things, like climbing stairs, kneeling, putting on my shoes easily, etc., than I did before.

But I’m not in nearly as much pain as I was pre surgery. That alone is worth its weight in gold. Yes, I do still deal with pain on a daily basis, but I rarely shrink back at just the thought of running into the grocery store for 5 minutes. I still hate going to the grocery store, but it’s a pet peeve thing.

So when people ask me if “it worked” of if I’m “better” it’s not an easy answer.

It depends on what your definition of “worked” is. Also I will never be “better,” assuming by “better” you mean “cured.” I started my life with CP & I’m going to end it with CP.

I didn’t have the recovery process I envisioned. But it could’ve been a lot worse. The surgery itself could’ve completely backfired no matter how much hard work I put into the recovery.

Although, if I’m being honest here, I do wonder what would have been possible under the original plan. Where I’d have as much PT as my body could take and my outpatient post-op care team was well coordinated as my pre-operative and hospitalization teams. I was facing an uphill battle even if I had had the best possible circumstances so when things didn’t go, and wouldn’t be going, as planned I started to panic.

The recovery process may technically be over but I’m still figuring things out, the good, the bad, the ugly, and the in-between.

Most importantly I’ve seen what it takes to get what you want. It’s not always easy but it’s worth it, one-hundred times over.

The road to recovery is a lot like closure. You want it and work towards it but it never ends up being how you pictured it so you just keep going, because there’s always more road to travel ahead.

HAWMC Recap

In April I took part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC). I was supposed to post a recap of the month’s posts, but BADD was yesterday so my monthly review got pushed to today.

I’m not going to lie. This last month has been interesting balancing everything was a bigger challenge than I anticipated, even though I’ve participated in this challenge in the past. One of the biggest blessings of re-launching a blog is that I have a fair amount of previously published material to draw on and republish. Frankly it’s probably the one thing that saved me from throwing in the towel on the whole thing after a few weeks. Doubling your course load and planning to write almost every day for 2 months straight when you can barely manage once a week wasn’t the best idea. But I made it (and I’m ready for a break).

Here’s A Rundown Of Posts:

Wordless Wednesday
The Key To Happiness Is……
Random Acts Of Kindness
A Creature Of Habit
Proudest Accomplishments
My Hero(es)
My Daily Diet
Keeping Track Of Memories
Challenge Of The Day
Comfort Foods
Letter To A Pet Pal
On The 7th Day
(Not Always) A Comeback Kid
“I Feel Best When….”
What Gets Me Excited?
Life Goals Of A 10 Year Old
Tag! CP’s It
Summertime Blues….Maybe
Stress? What Stress?
If I Had Time To Travel
Reflection On Activism
Hobbies In The Lobby
Free Swim
Fitness Friday
Word Cloud
Have A Good Day
Hit The Road Jack
H.E.A.L.T.H.
The Reviews Are In
Hindsight Is 20/20

Hindsight Is 20/20

You learn a lot being a professional patient. You learn more terminology and technology than your peers. You also learn what people don’t know. It’s often shocking how much medical professions don’t know.

You don’t expect one person to have all the answers but you expect them to know someone who knows what they don’t know. So it’s always surprising when no one knows the answer. It’s even more surprising when no one seems to want to do anything to help you.

I admit I was naive to the fact that Cerebral Palsy is indeed a lifelong condition that needs to be managed and monitored, even in the mildest of cases. It wasn’t until I was faced with a decline in function & chronic pain that I began to deal with reality.

I knew I was always going to have Cerebral Palsy. A cure was not in my future, not that I would take it. What I didn’t realize was that I’m really not like everyone else, although I am more alike than different. What I mean is I’m different enough that I can’t be just like everyone else, at least not anymore.

When I did seek help I was shocked at how little help I got; wasn’t refusing to treat someone and not offering leads going against, “first do no harm?” Apparently not.

Never mind some of the reasoning I got for not wanting to treat me, after making me wait for hours and charging me for the visit mind you (I’d rather be turned away on the phone while making the appointment). Let’s just say nothing makes you feel old (in a bad way) like people bringing up your age all the time.

I’m still surprised at the self-advocating I’d have to do (and still do) in order to get adequate medical care. And that’s with the hope that I’m able to find something somewhere. I’m all set now, as far as I know, but I can’t speak for the future.

Needless to say I think I’ve done enough internet research on my own to get a Ph.D. in “patient-heal-thy-self”-ology. I’m also a medical resident’s worst nightmare, but I think I was that even before I started researching on my own, now I just have the information to back up my theories.

I’m learning that the future for adults with Cerebral Palsy is largely unwritten, which has good and bad points to it. There are currently no long term studies on individuals over 18 who have Cerebral Palsy. There aren’t even enough adequate health care providers, so how can there be studies.

I wish I knew at 20 what I now know (or sooner); although I’m still not sure I would change anything. I should’ve paid attention when I didn’t have to fight so hard to get attention. I should’ve asked the questions I thought were stupid and didn’t ask. I should’ve asked any question at all. I shouldn’t have told myself, “I’ll worry about that later,” because “later” came a lot sooner than I expected it to. I should’ve taken my health more seriously when the professionals did. Then maybe we wouldn’t have to work so hard to be on the same page today.

I think I will always be surprised that there’s still so much work to be done in the 21st century, and how much has been left unchanged, for a condition that was discovered in 1860.

I’m taking part in The Health Activist Writer’s Month Challenge this month (also known as #HAWMC).

*A similar version of this post was written on April 12, 2013