Difference Is OK

Each case of Cerebral Palsy is different but there always seems to be “fads” that go around, as with anything; whether it be SDR or some other surgical option to Baclofen and Botox.

I’m going to say something that’s not that popular.

What works for one child may not work for your child and that’s OK.

It’s not some kind of medical competition to see who gets the most out of whatever treatment. I know it can feel like it, because it doesn’t stop once your child grows up.

I’ll give you an example, I was late to the party when it came to Botox injections. I didn’t like the idea that I’d have to keep getting them every 6-ish months or so. Everyone tried to talk me into getting them, so much so that my expectations were high, but manageable. Botox doesn’t work for me in the traditional sense, which is both good and bad.

I’m not on any type of regular schedule for Botox injections like most people with Cerebral Palsy who get them, but I get them at least once a year when my muscles get so tight, I don’t have any other options. It’s not the magic bullet that it can be for some people, but it does help me get back to my normal.

Another example is Baclofen, it’s one of the worst medications I’ve ever been on, in my opinion. I did a basic 2-week trial on the lowest dose possible and it ended up being one of the longest periods of my life. Granted it isn’t nearly as bad as some other have had it, but it was an experience I kind of wish I never had. Like the Botox, it didn’t work the way we had hoped.

Now, the one thing that makes my experience with Baclofen different than my experience with Botox is that it was more like a “let’s see what happens” venture. I was warned about the side effects and that it was going to be a process before it would actually work, if it did.

It did work, but too well, so in a sense it didn’t work either. My legs felt more “normal” but the rest of me was one big pile of mush. So that experiment ended quickly but the withdrawal was the worst part. Because yes you can go through withdrawal after just two weeks.

Now that I’ve given you two bad examples, I should give you a good example, trigger point injections work really well for me. Think of it like Botox injections without the Botox. I’m also partial to Myofascial Release. So, I try to get both of those as often as I can, because it’s cheaper than Botox and doesn’t always require insurance.

What am I trying to say with all of this?

Get as much information, both medical and personal about treatment options but manage your expectations. Just because it worked for another child (or adult) that doesn’t mean it will have the same outcome for your child (or you).

Cerebral Palsy is unique to the individual, the treatment(s) should be too.

It Takes A Village

I’m pretty sure almost everyone’s heard the saying “It takes a village to raise a child,” at least once in their lifetime.

Earlier this month I had to make a phone call. This wasn’t any typical call and it was meant to be anything but social.

Ever since Botox hit it big as a medical treatment (non cosmetic) it’s been circling my head like a bird. For the past two years the Botox discussion has becoming more frequent topic of my appointments. I’ll admit I was the first one to bring up the subject when it became an option, or I thought, now that someone else has been bringing it up I’ve been doing my homework on the subject and I’m more skeptical about it than ever before. I wanted to attempt to put the Botox question to rest once and for all so I made a phone call.

I don’t usually bring up my surgical history on a simple phone call but this was one of the exceptions. I knew I wouldn’t talk to my doctor personally without it and I wanted, and needed to speak to him personally. Of course the day I call he’s in surgery all day. Why do I always call offices on surgery days? You’d think by now I’d know to make some kind of chart to keep these things straight. I hate calling on surgery days because there’s a lesser chance of getting a call back without some kind of hassle. Most of you may not find this to be true and I’m happy that you have not had to encounter this; however I have found this to be true. Just my luck I guess. So I was pretty close to shocked when I got a call back that night.

Now I have to take a minute to explain my relationship with this particular doctor and what this has to do with anything else in my life, particularly the title of this post.
I’ve known Dr. L for over 20 years, basically my entire life for those of you keeping track. I don’t see him often, but when the shit hits the fan I often consider his opinion, whether he’s called or not. He’s basically like “The Godfather” of my medical life, although I’m pretty sure he’d be uncomfortable being called that. He’s basically the person who’s had the biggest impact on my life as I know it, parents not included. So his opinion on things that everyone has varying opinions on really matter to me. Not to mention I don’t want to do something that would do more harm than good.

Once I have him on the phone I forget my entire bit and ramble a little too much. He probably didn’t mind, or even notice, but I was mentally kicking myself. So I explain the situation to the best of my ability, which at the moment wasn’t anything close to my typical level of articulation.

He didn’t tell me what I wanted to hear but he told me what I needed to hear, which is just as good. The Botox decision is purely mine. He did remind me that it is a temporary treatment. When I said I am always looking for something permanent, O.K. so I pretty much blurted it out in an effort to get a more definite answer, he said I should look for a surgeon.

So I kind of got the answer I wanted to hear….
It’s kind of nice that he considers me to be “adult enough” to make my own decisions.
(That may not be how he intended things to go but that’s how I’m choosing to take it)

With business out of the way we moved on to other things. It was mostly me, but he went along with it. I’ll spare you of all of the conversation because most of you reading this don’t know my medical history, so this could be somewhat shocking. Also, I don’t want to violate some kind of privacy boundary between him and me. If you want to know more of the story, leave me a comment and I’ll write about it at a later date.

The thing about knowing someone for most of your life, without them being considered part of your family is they still have memories of you with their own special twist. You wouldn’t think an “outsider” would have one such memory never mind a few.

As he was telling me a story about myself as a toddler, one that I’d never heard before I might add, I have a funny thought. “It takes a village.”

Anyone who’s ever spent any significant time around children; parents, teachers, nannies, etc, will tell you that it does take a village to raise a child, or some sort of communication and cooperation with everyone involved in the child’s development, at least. I hard to learn this first hand, I’ve sometimes called it “the hard way,” working in childcare. Whenever someone asks me what the hardest part of the job was I will, almost always, say the parents. The families I served were pretty amazing, but it wasn’t always easy building a relationship with them. It’s like friendships; some are easier to build than others.

I’ve always known that Dr. L played an important role in my life. I just didn’t realize how much until I talked to him again and he just happened to share something more personal, it really was a cute story and it would be just as cute even if it wasn’t about me. He’s part of the “village” that helped raise me and become who I am today. It’s sort of unreal to be able to admit that. A few times I’ve had the thought of what would have happened to me without him. It’s true we could’ve found someone else. But then would things turn out as well? How many people can point to one person and say they’ve probably had the biggest impact on their life? I don’t think the number is really that high, although some might disagree. I think I’m one of the true people that can point to one person and say that without them things would not be the same.

Realizing this connection gives me hope that I’ve had some kind of impact on the “My Kids.” I know I did, but it’s mostly due to the feedback I got from coworkers and parents. I wonder if they’ll remember me when they get to be my age, and I doubt I’m alone in this situation.

It’s really true what they say, you never know what kind of impact you’re going to leave on someone, especially a kid. It really is an amazing thing.

I’m so proud to be part of hundreds of “villages.” I hope I served them well.

*A similar version of this post was written on October 31, 2008

Free The Feet

One of the interesting things about rebranding a blog is that you have something of a stockpile of posts to pull from, whether it be for memories, new ideas, or even reposting. I wrote the following 7 years ago, almost to the day:

-I don’t like shoes.

-I don’t like feet more than I don’t like shoes.

-My dislike for feet has nothing to do with how unattractive my feet actually are.

-My college campus was the land of flip flops, even more than most schools.

-I have a friend who promises his children won’t wear shoes until they’re at least 5, and even then not in the home.

-More than one of my friends gave up wearing shoes for Lent, and no one was fazed by it.

-I use to know someone who never wore shoes, even in the dead of winter.

-I can only wear sneakers.

-Only on rare occasions can I wear shoes that are not sneakers.

-I use to require getting a new pair of sneakers each month.

-My current shoes have lasted over 6 months surprising my exercise physiologist and new physiatrist, but for different reasons.

-My friends use to declare “free the feet” days during college.

During my last post-op visit I had several things on my mind. I’ll spare you the nitty gritty but having met with my physiatrist the day before & having opinions from the exercise physiologist weighed heavily on my mind. One of the biggest reasons I moved my Orthopedic care to Boston was that things are more comprehensive and having to coordinate my own care for the last few years had become exhausting and seemingly unnecessary. But I still have trouble letting go and not hand delivering mounds of paperwork to each doctor and/or specialist during each visit (I have printable files I regularly update as well as the “official” stuff) or putting my two cents in here and there in the form of, “Well ___________ said that_________________________ and it makes sense to me so……….”

I’m a rare crossbreed of nosy, self-controlling, snitch-of-a-sponge. But 9 times out of 10 I will deny this fact.

At my first post-op appointment, I was given a prescription for a new AFO, a “downgrade” for the one I had been wearing for the last few years. I wasn’t happy about it because (1) I actually liked the AFO I had and felt it only needed an adjustment or two (because I’m a professional after all) to be able to carry on, (2) I REALLY didn’t want a new AFO after all the work I had done. But I relented with the understanding that within a year I’d hopefully be able to rid myself of AFO(s) altogether.

“Can I stop wearing the AFO at least sometimes because….(I’ll spare you the pleading)”

“Well let’s see.” (I hop off the table take barely 2 steps) “Yeah, you’re fine. But after the Botox you’ll want to put it back on…… (tra la la)”

So I went out and bought new shoes, because an AFO can stretch out a shoe like nobody’s business. They aren’t my favorite looking but the fact that I’m wearing them AFO-less puts them at the top of the list by default.

Not really remembering that I’ve worn an AFO for years meant I was grossly under prepared in the sock department. I think I have 3 pairs that don’t come up to my knees. No matter how many I actually have it’s not nearly enough. Lucky for me my mother has an abundance of socks. Well not really, but she has a good number she doesn’t wear so I’ve become the proud owner of them, again by default.

I’ve adjusted to life without an AFO pretty easily & rather well I might add, but that all ends on Monday when I get injected with Botox.
I’m hoping going back to the AFO is only a short term deal, or else these last few weeks have been a major tease.

At least I’m not going back to lock-up. That was an experiment that I will never repeat for as long as I live, and neither will my orthotists.
For now I’ll be eagerly anticipating my next “Free The Feet” day.

*A similar version of this post was written on July 16, 2010

Being A Human Pincushion (part II)

 Once upon a time I said I probably wouldn’t mind being a human pincushion for a day, for a second time, if all the right ducks were in the right row. That almost happened this year, almost, when my PM&R’s office called needing to reschedule my appointment.

But with the sports medicine specialist away for most of the month (it’s conference season after all) it just wasn’t going to happen.

Instead I ended up going to Boston twice in a small window of time, without much time to spare, naturally.

On the plus side both appointments were resident free so that was pretty great, considering.

Although the appointments were over a week apart I still felt like a human pincushion, and not in a practical way that benefits me in the best way possible.

But it’s done, I’m hoping to get at least 6 months out of this round, although a year would be more ideal.

Never again would be magical. However, I know not to do that to myself.

So, I’ve set my sights on the 6-month mark.

The bruising and soreness has disappeared and I’ve returned to my regular activities, and then some.

I’ve made the appointments, just in case, but hope to be able to reschedule them for a later date.

Being a human pincushion isn’t an ideal situation but I think I’m beginning to come to terms with it and all that it entails, like scheduling appointments in a timely manner, rather than waiting until I’m “past due” and begging to be put on the schedule.

Although I’ve been a “professional patient” for decades I’m still learning the tricks of the trade.

Being A Human Pincushion

I probably should’ve written this post closer to when these events actually happened, but, life.

I’ve made no secret that I’m not a fan of in office medical procedures, especially those that can and often are performed in an OR. It’s not due to fear of needles, but rather a dislike for the planning and upkeep involved. Call me crazy, and most people have, but I prefer a longer recovery for a “one and done” thing. Plus, I’m not good with keeping track of things that need to be regularly scheduled. If it doesn’t need to happen at least once a week or twice a year it just escapes me.

So imagine how happy I was to have 2 in office procedures scheduled for one day. It helps in the planning in one aspect but not in others.

I’ve accepted the idea that Botox injections once a year, with a few rounds of trigger point injections during the year, works for me. I’m still not a big fan but I’ve accepted it until another plan actually works.

I have yet to fully accept that the best course of treatment for lingering muscle strain is a regularly scheduled cortisone injection, even though I know every other alternative is less than preferable. The doctor in charge of managing my strain knows my concerns, so much so that she addresses them at each visit taking things on a case by case basis even though I think we’ve reached the point of a sustainable treatment plan.

I didn’t want to get Botox and Cortisone on the same day, but at the same time I just wanted to get it over with.

The Botox came first mostly because I know that 99% of the time the doctor in charge of that isn’t late. So there was little chance that the day would get backed up, but I did leave my mom in the waiting room with everyone’s contact information, just in case.

The appointment itself went OK aside from the fact that there’s another new medical assistant who asked me if I had fallen in the last 3 months. My guess is she’s not aware of the fact that people with CP can’t go 3 days without falling never mind 3 months.

I talked my way out of anesthetic and there were no residents hanging around so it was a pleasant appointment overall. Trigger point injections are scheduled for about a month from now but that can be moved up or back depending on how I’m feeling.

Then I was off to hospital #2 for the cortisone.

I actually don’t mind these kinds of appointments either the waiting and procedure prep (which is really just more waiting) is far from my favorite, especially when they ask you to arrive at least 15-20 minutes prior to your appointment. It’s times like this when I would actually bring something to read or other work, if it wasn’t for the need for a sterile environment. I realize that bringing a book probably won’t make a difference but I’d rather not take the chance with a very large needle going very close to my femoral artery, any and all chances for infection and/or bleeding need to be kept at a minimum.

What I neglected to realize when scheduling these appointments was that I would probably be jumpier than usual on the second round of sticks. I know there’s a high likelihood as is that my muscles may jump at the exact moment I need to stay completely still.

My PM&R knows this and knows just how to pin me down & stick me with only 2 hands at his disposal, although he could call someone else in he doesn’t need to.

The sports medicine staff has been more than accommodating when I tell them they’re going to have to pin me down even after anesthetic has taken effect.

As a result of my extra jumpiness I was given more anesthetic prior to the cortisone injection. So much so that I couldn’t feel a thing from my waist to my knee. It came to me pretty quickly that I was not told to bring crutches or my wheelchair to the appointment and I would need something to just get off the table, never mind put my shoes on, walk back down the hall, and then walk out to the car.

Thankfully I did have my wheelchair in the car so while I was resting for the mandatory 10-15 minutes I told my mom to go get the wheelchair and bring it in, because this time they were not going to let me go without using some assistive device.

I had scheduled a follow up in case I wasn’t feeling too great but that day has come and gone so I’ll schedule another appointment when I feel I need it, which will probably come in a few months.

At the end of the day, although it was long and got increasingly uncomfortable as the day wore on, I probably would be a “pincushion for the day” again. I would come better prepared however, like having one time use icepacks in the car, or asking for an extra when leaving my appointments, and having some OTC painkillers on standby.

Needles, And Tape, And Meds, Oh My!

Remember when I wrote about getting Botox and trigger point injections. Well last week I went for a follow up and follow up trigger point injections.

Yes, I willing went to get stuck with needles at the full digression of a medical professional.

No, I am not insane. I promise.

So I had trigger point injections (no Botox).

It’s never the most pleasant experience but if you get the desired results it’s worth it, even this time which was highly unlike all the other clinic visits (but I’ll spare you the details).

We also talked about the possibility of changing up my meds, for muscle management since I’m finding that I’ve becoming more “loopy, droopy, and stupid” but I’m not getting much in terms of less tightness and spasms in my legs. I guess it is possible to build up a tolerance (which I could’ve guessed but I wish someone had come out & said it anyway).

The problem is every medication has its drawbacks and there’s no guarantee that any of them will work any better. In fact I wouldn’t be surprised if none of them work well for me, at all. I mean, anyone who saw me during the short time I took B@clofen calls it “the crazy stroke drug.”

A few weeks ago I got into a discussion at PT that ended with my ankle being taped up, for therapeutic purposes, so I snapped a few pictures for the appointment for a visual, because my brain is fried.

He supports the tapping since it can have really great benefits. I’m not sure how I feel about it long term but we’ll see how things go. Knowing how my body has been the last few years, who knows?

Once we figured out how long the effects of the trigger point injections lasted a plan was made and out came the needles (well needle).

Normally I go sans any anesthetic, because I’m all badass like that.

Actually it’s more like I hate cold sprays or creams and get post-anesthetic headaches like it was my job (that last part I had forgotten about until I was half way home and the car spun about 180 degrees, thankfully not literally).

And I am a badass like that.

But my doctor wanted to make sure my muscles were “jumpy” because he was in a trigger point and not because he stuck a needle in my leg. So I sucked it up and took the spray, begrudgingly.

A few minutes later it was done and I was out the door, all except for the fact that one of my socks looked like it belonged to Curt Schilling.


Apparently I was going to be a bleeder too; again, not my usual M.O, but it’s not like I can control it.

The bruising is more than usual as well but that’s always an unknown.

The plan from here is to go back in the fall for follow up and the possibility of Botox and/or Trigger Point injections then.

All About That Botox

I’m not the biggest fan of Botox injections. It’s not because of the needles or even the insurance battles, although neither of those helps matters.

For me, Botox is like a popular movie or fad; it’s never lived up to the praise or expectations.

Thankfully my doctor feels the same way, at least in terms of using Botox as a treatment option for me.

However last year we agreed (he suggested while I rolled my eyes) to try another round of Botox injections. Maybe I didn’t need them on a regular basis but once a year would be good enough to keep the potential for more serious issues at bay.

I thought I had a “get out of jail free card” in the form of scheduling issues which just wouldn’t work with insurance requirements. However since my insurance had changed in the last year there were no such requirements to coordinate with my schedule.

Less than 5 minutes later I was getting Botox injections. I went with it, but I kept my expectations low, as in bargain basement prices sort of low.

But it worked, if we’re talking about if the intended goals were met.

I sat through 3 hours of class for 5 days straight with minimal discomfort. Because who can sit that long in class and be perfectly content for the entire thing? But I think we can blame lack of sleep for the discomfort, because who can be perfectly content when overtired?

I kept up with my classmates and managed to stay, fairly, well rested without much difficulty. And honestly that last part can be difficult to achieve even during my regular schedule, or at least as regular as my schedule gets.

So we agreed to revisit the “summer Botox only” once summer got closer.

Because my goals for summer are a lot more direct, in a sense, than during the rest of the year. And if something goes “less than ideal” then I have a more ideal compensation plan (aka long periods of sitting).

Knowing my fondness for Botox injections I also inquired about doing trigger point injections as well (because my track record with those is great too so why not ask for more unpredictable factors that just might not work out so well).

Although it should be noted that sometimes an injection of Botox “doubles” as a trigger point injection if the point of injection for Botox is in a trigger point, or something like that.

I hate the maintenance that Botox requires, however I’m hating having trigger points just as much so yes I did ask to be stuck with a fairly large (for the needle-phobic, anyway) needle more.

However I think if we were to rid my legs of every trigger point at one time I probably wouldn’t be able to stand up, but don’t quote me on that one (because anything is possible, or not).

Things have worked pretty well this summer too.

The bigger problem was having a morning class & an afternoon class, both requiring lengthy and heavy reading. The more tired I got, the more uncomfortable I got, which is pretty par for the course regardless of the situation.

People often ask me what I think about Botox injections as a treatment option for managing Cerebral Palsy and I always struggle with how to answer without worrying that I’ll sway someone’s opinion (especially if they’re acting on behalf of someone else). Botox works great for some people and that’s great for them. But for me it’s always a roll of the dice, at least we’ve found one situation when it can be beneficial.