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Posts Tagged ‘cerebral palsy treatments’

News: Using Light to Treat Brain Disorders

January 8th, 2010 barryminimum No comments

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.

Diagnosis: Chronic Stubbornness with Recurrent Stupidity

January 7th, 2010 barryminimum No comments

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!)

Read more…

How to Be a Good Patient

December 30th, 2009 barryminimum No comments

In this NPR piece, a Boston doctor discusses how an encounter with an ornery patient changed her relationship to her patients and the trajectory of her career.  As a result of her experience with a single patient, the doctor says she is no longer afraid: “to allow my patients to take me on their journey. Whatever expertise we have, the patient holds the wisdom of their life.”

Crusty Patient Helps Shape Doctor’s Career

This made me think of some lessons about being a good patient that it took me far too long to learn:

  1. As a patient, be responsible for setting the tone and determining the course of your medical care;
  2. Do your homework on physicians so you can choose wisely. Like the President picking a cabinet,  surround yourself with professionals who have the know-how.
  3. Be willing to question and challenge your advisors, if a diagnosis or treatment suggestion seems off-base–no one knows your body like you do.

Fundamentally, you’re the one driving the bus. Get educated about your condition (or your child’s)  and the treatments available. Ask questions. If your doctor makes you feel uncomfortable or seems too harried to give you a cogent answer, find another one.

Over the years, I’ve often joked that I’m the worst medical patient in the world. I’m impatient, inquisitive, and over-educated, and I spend far too much quality time with Google. I read medical studies and pore over anatomical diagrams of the human leg before my appointments. I write down the names of the muscles and tendons I think might be the culprits. I send lengthy missives to my trainer asking about obscure body parts/ processes.

Maybe all this information gathering is an obsessive waste of time; but I feel more qualified to guide the journey if I’ve at least looked at a map.

Addendum: Don’t take my word for it, check out CNN’s tips for being an empowered patient:

Top Empowered Patient Tips for 2010

Disappointment: The True Mother of Invention

December 17th, 2009 barryminimum 1 comment

This morning I was ready. I was bundled up against the cold, a pair of black spandex shorts secreted under my jeans. My legs were limber from early morning stretching so that could show off my new moves for my doctor.  The great reveal: the follow-up appointment to my first round of Botox injections twelve days ago. Given the success I’ve had so far with my calf muscles, I was looking forward to another round of shots. They would, I hope, liberate my thighs, hips and lower back from the strangle-hold of spasticity. I was looking forward to sitting effortlessly cross-legged on the floor, to contorting myself into the lotus position, to kayaking in the spring. I was looking forward to being less knock-kneed, and to wearing shorts that don’t bunch up in the front when I walk.

Unfortunately, it wasn’t to be. At least not today. My doctor decided to exercise caution and wait for further treatments until early 2010. This wasn’t due to any adverse reaction to the drug, but rather concern that another round of injections, so soon after the first, might encourage my body to produce antibodies. These we don’t want, because they prevent the drug from working. (At least I think that’s what he was saying; I don’t speak Neurologist.)

I was disappointed, although I knew it was a distinct possibility that we’d have to delay. I felt like a little kid who finds socks and underwear under the Christmas tree. The doctor was doing his job, looking out for me, and looking at the big picture. But I was a little crushed. I was ready. I wore spandex shorts for the first time since 1989! It took all my willpower not to stamp my foot and say: “But Doc, you promised!”

On the train ride home I tried to console myself with the fact that a new date had been set, I just needed to be patient. It wasn’t really working for me. At all. I went through the rest of the day feeling like another roadblock had been thrown up in front of me, like I’d stumbled on the last hurdle. I was tempted to sit on the couch with a box of chocolates or some beer. I think what got me was the two+ month stretch of waiting, for time to pass and for the solution to land on my doorstep. It’s a helpless position to be in, waiting for something good to come to you. I’ve never been zen enough to make that work for me.

There’s nothing I can do about the delay, but that doesn’t mean I have to sit on my couch for two months. Instead of wallowing in self-pity, chocolate and beer,  I went to the gym. I knocked out 45 minutes on the eliptical–concentrating on maintaining my posture and pushing through with my heels. I lifted weights and focused on form and contracting the muscles I know are weak. My personal trainer extraordinaire (PTE) will be thrilled to know I did all the exercises I hate–including that hamstring one on the TRX.

And I felt better. I still feel better–because I have agency. I can use those two months to build muscle and strengthen my already liberated ankles. And if my doctor won’t give me the shots next time, I am pretty sure I’ll be strong enough to put him in a headlock by then.