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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I’ve been AWOL from this blog for a few days, adjusting to a new, more hardcore workout regime. It involves some interval training cardio, spliced between weight circuits, and quite frankly, has been kicking my butt.In good news though, according to PTE, I’ve got two degrees of dorsiflexion in my left ankle–although my right is staying stubbornly at zero.
Also, I’ve been grappling with writing this post about health care reform. It’s an issue I’m passionate about, and one that I wanted to be sure to address rationally and truthfully, without ranting like a lunatic. It’s difficult though, with many newspapers shouting that yesterday’s Massachusetts election signals the death knell for health care reform for this generation. For most people health care is a political issue , but for me, and many other people with chronic illnesses and disabilities, it’s a personal issue that wakes me up in the middle of the night in a cold sweat. Without reform, there is a chance that some day the Botox treatments that have so recently given me a new lease on life could some day become unattainable.
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Below you’ll find a cool article about a very small study on the use of customized virtual reality “games” to improve hand function in teenagers with hemiplegic cerebral palsy. I think it’s awesome on two fronts–a.) it’s an innovative application of a technology that teenagers would be self- motivated to use; and b.) it studies teenagers as opposed to young children.
Virtual Reality Tele-rehab Improves Hand Function: Playing Games For Real Recovery
The article also mentions that the use of remotely controlled virtual reality games offers a new way for patients to receive low-cost, effective treatment at home. The idea being that as the patient’s hand/arm motor function improves, a physical therapist could monitor their progress and increase the duration/level of difficulty. The remote monitoring system, while of course not a replacement for manual physical therapy, would decrease the stress, hassle and cost of traveling to a clinic regularly for rehab .
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Ostensibly, this is blog is devoted to the pursuit of physical fitness and not so much to the narrower goal of weight loss. However, since the desire to lose weight was my primary motivator in beginning this quest 12 years ago, for me, the two are closely, and sometimes problematically, intertwined.
Somewhere along the line, I began to believe that if I was thin enough, my body would somehow become more acceptable–both to me and to society, at large. The association between thinness/physical beauty and success/happiness is something that most women–and nowadays a lot of men–struggle with. So in this self-flagellation over proper diet and body size, I am, sadly, very normal. One well-loved piece of advice to avoid obsessing about your weight is to concentrate on what your body can do, not what it looks like. But when a large part of your struggle is frustration at what your body refuses to do, this advice falls pretty flat. These days, thanks to the Botox, my body and I have called an armistice after many years of bitter fighting–heck, I think we might even have a diplomatic relationship in the making! So now I’m going to give this perspective shift a shot.
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Yesterday was a scheduled “off” day at the gym. I ran errands, tried to avoid the allure of even just a teeny tiny bout of cardio, and basically sacked out on the couch. In addition to being bat-sh%$ fanatical about the gym, I have two other serious problems: 1.) an endless fascination with crime dramas (duh, duh) and 2.) a love-hate relationship with weight-loss and fitness shows. Yesterday, I was on withdrawal from the gym so I indulged in the other two.
I know that a lot of people are inspired by the show “The Biggest Loser” and that it’s been instrumental in igniting many Americans’ desire to get off the couch and get fit. I think it’s great to encourage people to take charge of their bodies and their lives, and I applaud the folks who are willing to undertake this challenge in a very public forum. Those folks are far braver than I am: that draconian trainer woman, the skimpy spandex outfits, the colossal scale? I couldn’t hack it. Shoot, I just recently started appearing in public in shorts for the first time in about 5 years, never mind being on television.
But I have to admit: the show drives me berserk.
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Two more successful workouts logged for the week: weights and 25 minutes of intense cardio yesterday, and a hour of cardio today–15 minutes on the Step Mill, 45 minutes of hill intervals on the arc trainer. The Step Mill is like the bigger, meaner brother to the StairMaster. It kind of looks like a mini-escalator; the steps move down as you walk up. It’s a tough haul, and currently I can only handle about 15 minutes. There was a time, when I was training with my Bad A$% Trainer before the broken leg, that I could do 45 minutes at a time. Clearly, I’ve gone soft. Even so, the 15 minutes on the Step Mill involves being at 80-90% of my recommended maximum heart rate for almost all 15 minutes, so I can’t be too disappointed. It’s so hard core it makes my eyeballs sweat. Or maybe that was just tears?
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Although Botox injections have been used in the treatment for cerebral palsy for over a decade, they didn’t really arrive on my radar as a possibility until about 5 years ago. And I didn’t consider actively pursuing it as a treatment until I began working with PTE (personal trainer extraordinaire) about 2 1/2 years ago. Now, I’m determined never to miss out on a promising treatment due to my own ignorance, so I’m signed up for all kinds of neurology news RSS feeds.
New Tools Use Light To Turn Off Brain Cells And Possibly Treat Brain Disorders
Although cerebral palsy isn’t mentioned specifically here, it is a type of brain injury, usually suffered before, during, or in the two years after birth. CP is characterized by “inappropriate brain activity” similar, I think, to what’s described here. So it seems to me–although like I said, I speak only remedial “neurologist”– that this might eventually be an applicable treatment for CP too.
Anyway, very cool.
After all that carrying on on Tuesday about missing my workout, I woke up refreshed and renewed on Wednesday. Despite an even rougher day at work than the day before, I hit the gym and knocked out 30 minutes on the eliptical, and an hour of weight-training/muscle work. So all of the hand-wringing was, as I suspected, an attack of stupidity.
Afterward, I felt fantastic! I went home and danced around my kitchen to the Glee soundtrack and cooked dinner. (The cover of “Gold Digger” is a quality quality song!)
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I have to keep reminding myself that the purpose of this blog is to share my experiences, missteps as well as victories. The purpose is not to show how well I’ve got things sorted out, or to dispense advice that I can’t take myself. So in the spirit of full-disclosure, I’ve got to admit to skipping my planned workout this evening. And I’ve got to admit to skipping it for no good reason. I got home at a reasonable hour, and had plenty of time to go. Frankly, it’s still early, I could still make it.
But I find myself inexplicably stuck: stymied and deterred by inconsequential things. I haven’t got any clean workout gear that I am willing to wear in public. The gym is likely crowded with people determined to adhere to their new year’s resolutions. I’m irritated by some work events late in the day. A stranger nearly knocked me over at the grocery store yesterday and then was rude to me too boot, and I’m still stewing over it. I don’t want to watch other people at the gym easily twist themselves up into pretzels while I struggle to move my toes 3mm closer to my shins. (Dorsiflexion Holy Grail, remember?) Today, I just plain old don’t feel up to it, and not just the physical effort either.
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