Children's Health For health and neurological concerns in children.


advertisement
Reply
 
Thread Tools Display Modes
Old 09-24-2006, 11:58 PM #21
lauren'smom lauren'smom is offline
Junior Member
 
Join Date: Aug 2006
Posts: 25
15 yr Member
lauren'smom lauren'smom is offline
Junior Member
 
Join Date: Aug 2006
Posts: 25
15 yr Member
Default

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
lauren'smom is offline   Reply With QuoteReply With Quote

advertisement
Old 09-25-2006, 10:37 AM #22
NJenn NJenn is offline
Junior Member
 
Join Date: Sep 2006
Posts: 15
15 yr Member
NJenn NJenn is offline
Junior Member
 
Join Date: Sep 2006
Posts: 15
15 yr Member
Default

Quote:
Originally Posted by JoaD View Post
GO BLUE!!!!!!


Terrific game this weekend too!
Joanne

Oh my god, you're telling me! But the one the weekend before was even better
NJenn is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 11:40 AM #23
Mother's Heart Mother's Heart is offline
Junior Member
 
Join Date: Aug 2006
Posts: 58
15 yr Member
Mother's Heart Mother's Heart is offline
Junior Member
 
Join Date: Aug 2006
Posts: 58
15 yr Member
Default

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.
Mother's Heart is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 01:49 PM #24
andromeda31 andromeda31 is offline
Junior Member
 
Join Date: Aug 2006
Location: Sherwood, WI
Posts: 12
15 yr Member
andromeda31 andromeda31 is offline
Junior Member
 
Join Date: Aug 2006
Location: Sherwood, WI
Posts: 12
15 yr Member
Default

Hi!

I am in the "go for it" camp too! Like others have said, it would be really nice for Caitlin to have a doctor who knows firsthand what she is going thru. It would not bother me to see a dr in a wheelchair, more important to me is what comes out of their mouth! (We've seen some real cads in her short life, but we have great doctors now thru trial & error!!) It would be really cool for her to see someone else accomplishing so much! I worry about her limiting herself...I always said, hey she could be a programmer like her mommy!! College is not going to be a choice in our household...we talk about it with the kids all the time even though they are little (5, 3, 1) yet. I always ask them if they are going to be a Badger?! Even if she can't go that far away, there are plenty of UW's close to home here for her. Good luck, go with your heart!

Lisa O.
andromeda31 is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 03:12 PM #25
Kira Kira is offline
Junior Member
 
Join Date: Sep 2006
Posts: 13
15 yr Member
Kira Kira is offline
Junior Member
 
Join Date: Sep 2006
Posts: 13
15 yr Member
Default

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.
Kira is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 03:35 PM #26
Beck Beck is offline
Junior Member
 
Join Date: Aug 2006
Posts: 51
15 yr Member
Beck Beck is offline
Junior Member
 
Join Date: Aug 2006
Posts: 51
15 yr Member
Default

I took Spencer to a GP the other day that is in our practice. He has a son with CP.

Frankly, I felt more like I was talking to another parent with a child with challenges than a Doctor. It felt much more natural and relaxed.

I believe in following your heart, your bliss.

I wanted to be a science researcher or Doctor but didn't think I was smart enough. My parents didn't give me any self esteem. I had to get it later in life. Now, I realize that I am and was way beyond smart enough to have gone that path. So, I use my research abilities in helping me track down issues for my children and myself.

So, follow your heart's desire.

Did you have a thought on your specialty? GP, Peds, Neuro, OB, etc? Course, I think that most don't really know. That is why they have the Residents and Interns do rotations in the different specialties so you get an idea of what the different ones do and find your bliss.
Beck is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 03:51 PM #27
sunandmoon sunandmoon is offline
New Member
 
Join Date: Sep 2006
Posts: 3
15 yr Member
sunandmoon sunandmoon is offline
New Member
 
Join Date: Sep 2006
Posts: 3
15 yr Member
Default

NJENN.. I haven't read all of the replies, but I would love to see a doctor treating my kids who had walked a minute in their shoes. I see this in the endocrinologists that treat my son with Type 1 Diabetes. Those with it, totally get the complexities and the fact that it is TOUGH having diabetes when you are a 13 year old kid, and they are the greatest champions, the other endos are pretty dower and don't really empathize very well. If my physiatrist had a physical disability, well I would really like that and I think so would my kids.. If you can manage it do it, you should live your dream.
sunandmoon is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 04:19 PM #28
Carly'sMaMa Carly'sMaMa is offline
Junior Member
 
Join Date: Sep 2006
Posts: 23
15 yr Member
Carly'sMaMa Carly'sMaMa is offline
Junior Member
 
Join Date: Sep 2006
Posts: 23
15 yr Member
Default

Go for it.

I have met docs with asthma and I'm sure there are those with other conditions as well. Why not CP?
__________________
Deborah, mom to Carly, 15, something genetic with a little autism and growth hormone thrown in; Jeremy, 13, a terriffic kid; and married to Duane for 22 years!
Carly'sMaMa is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 04:23 PM #29
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
15 yr Member
Curious Curious is offline
Yappiest Elder Member
 
Join Date: Aug 2006
Location: Texas
Posts: 13,418
15 yr Member
Default

njenn,

it wouldn't matter at all. go for your dream. what a pleasue it would be to find a dr with the real life experiences you have. the compassion.

me thinks you will have a full waiting room.
Curious is offline   Reply With QuoteReply With Quote
Old 09-25-2006, 06:58 PM #30
Mangosmom Mangosmom is offline
Junior Member
 
Join Date: Sep 2006
Posts: 25
15 yr Member
Mangosmom Mangosmom is offline
Junior Member
 
Join Date: Sep 2006
Posts: 25
15 yr Member
Default

Now when you become a doc.. will you come live in Arkansas so I can have Mango come see you? Really, its a beatiful state Heck I would even let ya come stay with us hee hee hee.

Good luck hon. If you decide to do this, I KNOW you will be the best at whatever you do.
Mangosmom is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off



All times are GMT -5. The time now is 11:53 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.