So it’s the day before Botox, Round I-Have-No-Idea-What-Number, and I feel freaking phenomenal. I keep thinking that by now I should feel like the drugs are wearing off. I keep waiting for the back pain to come back, or for my calves to feel like they’re in a vice. Or to fall on my face and get some fresh road rash. Something that let’s me know that it’s time for a top-up. Funny thing is, I feel really really good.
Sure there’s some occasional tightness in my glute med which has been working hard lately to get rid of some of the remaining scissor-gait and internal rotation of my thigh. But I’ve been able to manage that with strategic long-haul cardio and stretches. And some days, particularly after a long day of sitting, or a hard day at the gym, my left hamstrings get angry (ok, livid might be a better description), but a couple of hours in my oh-so-stylish AFOs (ankle-foot orthotics) and they usually chill out. I feel so good that it scares me.
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Now that I’m getting a handle on my physical being, I’ve got some other messes to clean up. Since the physical pain factor has been mitigated to a great extent–I’m terrified to say that it’s completely gone, because my body has a habit of doing weird things to spite me. But Botox, Round Four happened this week—including a light slap for my psoas which I think might have tamed the last of the SI joint pain! Jury still out a little as things shift. . .but I definitely feel better. So with that out of the way I’ve been thinking a lot lately about the emotional barriers that keep me from making progress in my life. In particular I’ve been thinking a lot about the thought patterns and behaviors that unleash torrents of unhappiness, inhibiting our ability to change and optimize our lives.
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Erm, ok. I really don’t have a good excuse for not having shown up here for most of the summer. I could say I was traveling–which is true–or that I was busy with out-of-town guests–also true–but neither of these is a good excuse for being a negligent blogger. This time I have to cop to something even worse: July was a fairly light workout month. In the past month I’ve probably averaged about 2 workouts a week, far less than I should be getting. I was out of town or I was recovering from being out of town. It was 975 degrees outside. The list of lame potential excuses goes on.
Although the last round of injections solved a majority of my back problems (whoot!), my balance has really taken a hit. This isn’t so much because of what we treated with a wallop–the adductors–but what we had to leave alone as a result. My solei–the calf muscles predominantly responsible for helping maintain balance–are very, very angry. They’re contracting in seriously inappropriate ways at massively inappropriate times, pitching me forward and sending me into spontaneous face-plants. I’ve fallen three times in the last month, far more than usual. Last week I was standing still and I fell over! It was classy. I ended up with rug-burn on my chin and shoulder, and sprained my ring finger. I’ve begun telling people that I’ve taken up motor-cross in my spare time. That’s far more entertaining, and less embarrassing than: “Yeah, I was standing in my office and spontaneously fell over.”
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I’ve promised a treatment update for about a week now. For once, I haven’t been lazy or obfuscating, but rather waiting strategically for a good time to post. Letting things settle in and even out so I can give an accurate account of the results so far.
The verdict: Yeehaw! Boo-ya! Hallelujah!
We finally hit the major culprit, and hard enough! We doubled the dosage in my adductors–hitting some of the little muscles at the top of the inner thigh–and BINGO, 80% of the remaining pain, gone! Although the drugs generally take a few days to kick in, I felt relief within hours–after a drug-diffusing cardio workout. I was lying on the couch and realized that much of the persistent tightness in the piriformis was gone, and the nagging nerve zing? Gone! I sprang up off the couch, and did about 57 exercises that usually guaranteed discomfort and pain. Nothing, nada, zip!
I sent a thrilled email to PTE entitled “Hallelujah” or some such nonsense. She called the next day so that I could squeal at her into the phone, we rejoiced because literally things stopped being such a pain in my ass. My neurologist is lucky I didn’t call and squeal at him too. I spent about three days squealing and dancing around my kitchen. As things have adjusted over the last couple of days, I’ve developed some aches in new places, some of the twinges have returned but in lesser forms, more easily remedied. In my experience, this happens for a while–things shift, muscles and joints find new ways of moving, some joints and muscles get aggravated. I try not to get too discouraged that it’s not instantaneously perfect. Every time I get over-critical about remaining gait idiosyncrasies, I remind myself that we can still tinker with muscles and dosages. I also try to remind myself how much worse it used to be.
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Does that ever sound like a Reagan-era public service announcement?! What that headline probably should say is: Drugs Are Only Part of the Solution. In my last post I talked a little bit about my search for solutions to my recurrent back pain over the last couple of years. It would be easy in looking at this blog to make the mistaken assumption that Botox injections alone were the solution to my problem. I’ve often described receiving my first round of shots as “my Christmas miracle” and natter incessantly about how this experience has changed my life. But without sounding conceited or overly self-congratulatory, I have to admit that the improvement I’ve seen has not been a purely pharmaceutical “miracle.” It was born of literally years of hard work. The miracle that the drugs worked for me is that they made my work more effective.The two things that the drugs do is temporarily decrease spasticity and as a result, decrease pain. The rest of it? The improved gait, increased strength, etc.,? Much of that comes from the hard work.
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So I earn a failing mark for consistency in blog posting, that’s clear. And this week I also earn a fail in the workout department, due to a Spring head cold. Is there anything more demoralizing than feeling like death-warmed-over when the sun is shining?
I’m on the mend and feeling extremely chipper today: it’s Saturday, I have a new ice cream maker and some new magic UnderArmour, and I had an awesome physical therapy appointment in Baltimore on Thursday. I’ve got less than a week before my next round of injections, and although some of the spasticity is, of course, returning to my legs, my gait continues to improve and my back is remaining (miraculously) aligned. Read more…
I’ve been asked a number times in my life–by strangers, friends, doctors, therapists–how I got cerebral palsy. In my case, as is true for most people, we don’t know. I do know that I was born 56 days premature in 1975, and that being premature is a risk factor for cerebral palsy. I also know that I has jaundice after I was born, which I’ve read can also, in extreme cases, cause brain damage. But other than those facts, we don’t know. Some people are born premature and go on to have few medical problems, or none at all–like my older brother. When asked by friends about my CP, I used to joke : “I just lost the crap shoot.” And for a long time, I felt that way. I tried to feel blessed and lucky, especially when I read stories in my mom’s Reader’s Digest or Woman’s Day about premature babies, even in the 1980s and 1990s, who didn’t make it. But truthfully, I didn’t feel very lucky–and there are some days I still don’t. I’m in a club–with about 800,000 other people in the U.S.–that I never asked to belong to.
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After a completely unintentional, inexplicable, snow and inertia-induced hiatus, I’m back. The good news is that, while I was on hiatus from blogging, I was not on hiatus from the fitness quest. During the Snowmageddon/Snoverkill debacle that gripped the District this month, I was, in fact, particularly stalwart and vigilant about my workouts (read here: bored and climbing up the walls of my apartment). I was in full-on preparation mode for my second round of Botox injections, so I wasn’t about to be deterred by a little–or even a lot–of snow.
Over the last couple of weeks, I also trekked out to Baltimore to see the osteopath, who rearranged my back and abdomen. While I was there, we also took some strength and range of motion measurements in preparation for the next round of shots. These measurements help the PTs and neurologist to determine where the Botox would be most beneficial, and can give a good indication of how my gait will be affected. The point of the Botox is to improve gait mechanics–and pain–so the pros choose carefully where the drugs should be applied. If a particular muscle group is too weak, then regardless of spasticity, they are hesitant to hit that muscle group. This is basically because, if you’re already an ambulator (a fancy way of saying that you can walk), they want to make sure you stay that way. This is fundamentally why the group opted only to inject my gastrocs and soleus (solei?) in the first round–because they were unsure of the net affect of more extensive shots. These, however, were folks who didn’t know me well and under-estimated both my strength and determination.
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Today the American Academy of Neurology released new guidelines regarding the use of drugs, including Botox, to reduce spasticity in children with CP.
AAN Guideline Evaluates Treatments For Kids With Cerebral Palsy
This is great news for a number of reasons, including that it will make it more difficult for insurance companies to deny coverage for Botox injections, citing that the treatment is “experimental.” But I have to admit to being disappointed–and beating my head against the desk– because adults have been excluded from the guidelines. (This means that denial of coverage can still take place in the adult population.) The guidelines, though, were generated after a review of existing literature on the subject of pharmacologic interventions for spasticity–most of which only looks at children. As I’ve worked on this blog and sought treatment for myself, I’ve been routinely appalled and frustrated by the lack of academic study and funding devoted to treating adults with CP. It seems that no one is looking at the long-term benefits of treatments administered over a patient’s life span from childhood to adulthood, either.
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This week I made the trek to Baltimore for some physical therapy. Generally after you receive Botox injections, you embark on a pretty serious regimen of physical therapy–two or three times a week. The idea being that you should take advantage of the additional flexibility and get some muscles stretched and some joints moving. I lucked out, since PTE (personal trainer extraordinaire) is also a physical therapist, I can have this taken care of during our weekly workouts. Also, I’m the Queen of Compliance–which means I can be depended upon to comply with all of the doctor’s/PTs orders, to the letter and beyond. PTE routinely warns other physical therapists that they should be careful what they tell me to do, because I will, on average, do 50 to 100% more. Yeah, yeah, I’m an over-achiever.
Roughly once a month, though, I head to Baltimore to have my back, pelvis, and guts rearranged by an osteopath specializing in visceral manipulation. Would you like to hear that again, in plain English? As I understand it, visceral manipulation–and osteopathy, in general–focuses on the body as a single system, and on the relationships between tissues, organs, muscles, etc, and on the energy they produce. When you see an osteopath, they’re going to look at your whole body–not just the “sick” or wonky bits. I’ve read a little about it, and I’ll tell you now that some doctors doubt the effectiveness of visceral manipulation. However, in my case, it’s been a wonderful experience and both the visceral manipulation and regular muscle releases have yielded some terrific results. For the first time in two years I went a solid month without an SI flare, or having to call PTE for an emergency realignment.
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