If they use EMLA cream or spray, she wont feel the poke-- just a strange little sensation as the needle hits the muscle. After the injection, it burns a little but not bad-- at least in my adult mind. As a kiddo, I think I would have milked that burning for all I could get and screamed my head off. But then again, I was always a drama queen.

The strangest feeling, for me at least, is the burning and spasming that happens a few minutes after the injection and intermittantly over the next few days. Again, it doesn't hurt-- just feels wierd, and kind of catches you off guard. I always make a point to explain what I feel to my docs so that they have an idea of what the kids go through.

And I went to a new OB/Gyn this week who asked me when I "acquired" CP. To her credit, though, she allegedly delivered the baby of a woman with CP once.

I would love a consult with Dr. Brunstrum. She's so pro-exercise, and it's hard to find docs who have jumped on that band wagon. I'm sure she's walking with only a cane because she practices what she preaches!

Lori, just out of curiosity, can you tell if she's diplegic, hemi, or quad. I thought diplegic when I saw a video of her mostly b/c her speech was unaffected. It was kind of freaky seeing that video-- we look, talk, and walk a lot alike. Kinda scary.

Lets set the bar really high for you and leave you with no excuses.
Alex's neurosurgeon who performed his SDR is Karin Muraszko. She has spina bifida and her parents were told to place her in an institution. She has been named the Chair of the University of Michigan Neurosurgery Department. She has trouble walking too but it doesn't stop her at all.
http://www.med.umich.edu/opm/newspag...rgerychair.htm
Joanne

I've met her. She's wonderful. I did my degrees in Public Health at Michigan, and I miss it terribly. She is an example of someone who needs a significant amount of accomidation but has made it work.

I think the one thing I didn't make clear is that I am ambulatory, and use a chair to get from point a to point b quickly. I can stand independently and walk independently (and with one crutch). Would I want to do it all day every day? No. But can I stand if absolutely necessary for significant lengths of time if no other accomidation is available? Yes.

Thanks for your input, everyone.

[quote=NJenn;12790 I did my degrees in Public Health at Michigan, and I miss it terribly. .[/QUOTE]

GO BLUE!!!!!!


Terrific game this weekend too!
Joanne

Oh my god, you're telling me! But the one the weekend before was even better

Put me in the "go for it" camp. While CP is not one of Tom's issues, I'm found your posts very informative. Especially from the perspective of a parent who wonders what her developmentally delayed son feels / thinks / etc. While you can't answer all of those, you can definitely give a lot of first hand experience parents crave. And, don't forget the "hope for the future" that you inspire. We crave that, too.

Go For It!!! I would love to take Lauren or any of my able bodied kids to see you any day over anyone who had full capabilities!!!! You have been there, done that and are still doing it, what a testimony that you are willing to go even thorofarther (okay, i know that isn't even a word!) I just would like to be able to find a doctor that understands my kids with problems and be able to help them without mom always having to interrept for them...,without those weird looks, etc....

Even if you go for your PA, there are a lot of clinics here that we cannot go to because there are not people there that understand our kids.

Good luck and many prayers for you in whatever road you chose...


Debi

I think that as long as you are reasonably certain that your body will let you do a lot of the stuff that you are going to need it to do (with accomodation as needed, but so what?), then do it. The OR thing... they'll drag in a stool or something for you to sit on if you need it, etc.

My friend who is blind is an expert at finding ways to do stuff that people say he can't do. He got a "A" in histology as a first year med student. Histology is a class that is pretty much entirely made up of looking at slides under a microscope. He did this by having the professor make enlarged black & white copies of the slides (or similar slides of the same tissues), and then he put them through a special printer that makes black lines raised. He felt the shapes of the different cells, etc. He also had a "describer" provided by the disability service center on campus, who would tell him what color certain areas were, etc. This same guy has two black belts (tae kwon do and judo), was valedictorian at his college, and one day gave me an elaborate lesson on how to properly steer when paddling a canoe. He even got to carry the Olympic Torch as part of the relay when the winter games were in Utah in 2002. He lives his life with this attitude that he can do pretty much whatever other people can do... just that he has to find a new way of doing things sometimes.

Stamina-wise, hell, lots of us didn't think we could do it, but we just sort of kept pressing through and that was that. The stamina thing is something you'll have to answer for yourself, of course, since I have no idea.

But you can come up with ways to conserve energy doing things during the day (I forced my team to take the elevator between floors when we were rounding, and they did it... took longer than charging up the stairs like they were used to doing, but then I saved myself from pain and weakness in my calves for the rest of the day). You can tell them you need to sit when people are presenting patients on rounds... or use your wheelchair... and that will get rid of the need for the stamina to stand for hours in the morning while people present. Same for clinic days... make it a priority to conserve your energy. The energy conservation thing was a lesson I learned the hard way.

My medical issues are constantly in flux and have been worsening considerably over the past couple of years, so I am constantly having to set new limits for myself and redefine who I am and what I can do. But you and I don't have the same disorder, not even close. (I have a metabolic myopathy, probably mitochondrial, and get recurrent attacks of rhabdomyolysis as well as some ongoing pain and weakness. My disorder also affects my nerves, kidneys, acid-base status, and mood. There are some possible effects on my heart as well, but right now they are mild if they are there at all, so we are just watching it.) My experience has been one of becoming more and more disabled, while yours is something you've had your whole life. I get "episodes" where I am quite sick, and stretches of time where I am relatively okay. It is frustrating because when I am well it seems like I could do what I want to do, no problem. But when I am sick and stuck in the hospital or whatever, then it seems like I am crazy for trying.

I want to do pediatrics... have always wanted this. I am thinking more about doing a more sedentary specialty instead, though, like child psych or some subspecialty with less on-call time or whatever. We will see what things are like by the time I finish this degree program in 2008.

About the MPH thing... you're right that it does put us in a good position job-wise, even if the doctor thing doesn't work out. That was one reason why I chose to do this grad school thing at this point in my life... because even if the whole "doctor" thing doesn't work out, I can still do things that mean a lot to me and that are health-related, but that are "desk jobs". I wanted to do an MPH eventually anyhow. I did a lot of work with kids and moms from the housing projects in Chicago while I was in med school, and really decided that I wanted to do work that incorporated that sort of focus when I was a doctor. I got to know a couple of amazing pediatricians while I was there who were doing really good work with the kids in the projects, and I would love to be able to do work like that myself someday. I know that the MPH will help. The thing was... I did things out of order and took time off between med school and residency, so that I could respect my body's boundaries without totally destroying my career.

Also, I echo what the moms are saying about docs who do and don't understand. I have a group of pretty good doctors right now (trial and error), but it wasn't always that way. I am constantly having to explain my disorder to the ER docs or the internal medicine team when I am inpatient, and they don't even know much about it (luckily my metabolic doc and neuromuscular doc do). They will make assumptions about my level of pain, weakness, and what I can and can't do that just aren't true. They will also question doing certain treatments that my metabolic doc requests (even as simple as putting glucose in my IV fluids during an attack), just because they aren't familiar with my disorder. "We don't usually do that for rhabdo" (but most rhabdo isn't caused by metabolic myopathies, and most people don't get 6 attacks of rhabdo in one year). "But that disorder is so rare, why do they think you have that?" (because whatever specific enzyme defect it is, we have a lot of lab and family history info that most closely fits the mitochondrial disorders, and we aren't done with the workup yet, and my SPECIALISTS who actually know about this stuff think that's what it is).

It would be awesome if I could find a doc who not only knows what mitochondrial disorders are and how to treat them, but who knows what it feels like to live with the uncertainty and disability they cause. A sympathetic doc who would actually get it when I describe living in my body.

Anyway, just wanted to reply again. Are you applying this year? If you are and you have questions about the application process, certain schools, etc, feel free to PM me.

I would have no problem with seeing you, or any other doc with a disability. I am agreeance with the other parents on the advantage of having a doctor who has some insight from personal experience with the challenges and pitfalls our kids face. I also would want the doctor to recognize that while she has great insight to the reality and many details of 'our' life- that each person's expression and experience with the disability is unique and she must be alert to the fact that there will be some things she could STILL misunderstand or not recognize. I would think that having lived it you would be more aware of that than the average AB doc, especially since you've also lived having typical doctors make wrong assumptions about you as an individual. Just gotta watch the lumping everybody into the same course.

um....I would come see you personally in an eyeblink. I think a PMR doc who has experienced CP and many of the trials and triumphs would be a huge plus, emotionally for the parents and practically for the patient. That thing of seeing someone actually DOING what everybody keeps telling you is possible if you 'really want it' speaks volumes. I absolutely love one little five minute experience we had with our Ped pulmonologist. My daughter is...I mean was...very low vision. We have been seeing him for years. One visit a few years ago he was wearing his glasses. He wears VERY thick lenses like my daughter's and puts them on and off to switch from chart writing to exam/conference. At the end of a visit I just pointed them out to my daughter and reminded her that she's not the only one with low vision and that odds are she CAN find a way to do what she wants. This very quiet man just smiled his small smile and allowed her to look at his glasses. Nodded his head and said, "Yes, that's right." This brief moment has echoed through her world, just reminding her that she is so much more than her disability.
That was a direct confrontation but for my daughter there have been many others where she has taken more away from her interactions with PWD professionals who without ever calling attention to what they've accomplished have encouraged my daughter to think ambitiously for herself and strengthened her self-concept. Each encounter gets added in to her thinking. I'd like there to be more with folks like you, and Dr. Brunstrom, and the many others who haven't listened to the rest of us nay-sayers.

BTW: I wouldn't hesitate a second to become your patient myself....my being without a neurogenic disability. I would need your knowledge and expertise as a physician and for me that's independent of whatever your physical appearance and mode of functioning. Your value as a physician is much more than this one aspect of understanding what it's like for the patient. The experience with cp is a plus.

I think that as more of our society's obstacles to PWD's are being knocked down and the average Joe now encounters more and more folks in chairs or with movement or cognitive differences in day-to-day life that that old reaction of discomfort or uncertainty about your capabilities is becoming less typical. It's just no longer so unusual to see someone living with a disability, and acceptance comes more readily.
At least in my town that's the way it is.

boy am I long-winded. When YOU are ready, I'm in your corner.