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Old 09-24-2006, 07:17 PM #11
Kira Kira is offline
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I don't usually post on this forum, but I read it sometimes. I am 27 and I have a mitochondrial disorder (we think it is mitochondrial; we know it is metabolic). Anyway...

I recently finished medical school. I'm not doing a residency right now, because I have been in the hospital too much over the past year and a half to be able to show up for work often enough to make it work. I'm doing a Masters in Public Health degree right now and hopefully can get a little more stabilized in the meantime, so I can go back to school.

I wanted to tell you about a couple of people. There is a guy that goes to med school at UW Madison (working on his MD/PhD) who has been blind since he was a teenager. He has a degenerative disease that affects his optic nerves. He is a total inspiration, and one of the smartest guys I know.

The other person I wanted to tell you about is a PM&R physician at the Rehab Institute of Chicago. I am drawing a blank on her name right now, and I also don't know what specific disorder she has. But I do know that she is in a wheelchair and appears to have some spasticity, etc. People respond really well to her and she is great at what she does.

So, yes, you can do it...

BUT, be honest with yourself first. Do you have the stamina to make it through rotations, residency, etc (with reasonable accomodations, of course)? Do you have the physical capability to examine a patient, work for hours and hours on end, observe and sort of assist in the OR? If not, can you come up with alternate ways of doing stuff that would work (like my friend who is blind does)?

I'm not asking that stuff to be mean. I'm asking it because my own physical functioning has declined a lot in the past couple of years, and there are some things that I am not sure if I can do them anymore. It is just a big, big time and personal life investment... a big emotional investment... not to mention the money, etc... and once you get started on the whole med school tract, it is hard to get out of it easily if you need to. I have a ton of debt right now and am not sure how I am going to deal with it if this turns out that I can't do a residency. I also find that I am strangely unqualified to do a lot of "ordinary" jobs, and not quite licensed, so unable to do the jobs I am actually trained to do. Hence the grad school... way to pass time, defer loans, etc in a more forgiving environment.

Anyway, it sounds so discouraging at the end of the post, but what I really wanted to say was a cautious "go for it..." but be realistic about what you can and can't do, and know that there are other disabled physicians who are incredible at what they do. Don't let the disability itself be what keeps you from doing what you want to do... just respect your body's limits along the way, and be really honest with yourself.

If you want to talk about the med school thing, or know the name of my friend, etc, feel free to send me a pm.

Take care!
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Old 09-24-2006, 07:50 PM #12
Lorilou Lorilou is offline
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I say "go for it".

You mentioned Dr Jan - she has been my kiddos neurologist since they were 18 months old. She is an amazing doctor who runs the #1 CP center in the United States.

It actually sounds like your fine motor is better than hers. She doesn't do Botox and I've never seen her actually write. She requires help with parts of exams (hamstring stretches, etc) but there are always a group of residents following her around anyway She does walk independently but she often uses a cane.

I echo all the previous posters who love the idea of a doctor who actually understands. I'm sure we can all tell stories of doctors who didn't "get it". I actually had a resident ask once what the "plastic thingees" on Noah's feet were

Lori
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Old 09-24-2006, 09:05 PM #13
AnnieCB AnnieCB is offline
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Default Go for it.

I agree with everyone here. Last week, Livy's physiatrist recommended botox for her and when I asked if it hurt, she said it isn't so bad. I wondered to myself- How does she know? Its sort of the reason I looked for a woman OB-GYN who had already gone through pregnancy.

It would be wonderful to take Livy to a doctor that has been there and it would also be great for Livy to see that CP doesn't have to keep her from achieving great things.

So, Good for you and great for the CP patient community.
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Mom to Twins (4/04) Claire (auditory neuropathy) and Livy (mild spastic quad) and big sisters Reilly (8) and Bridget (6).
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Old 09-24-2006, 10:10 PM #14
NJenn NJenn is offline
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Kira,

I appreciate your comments. I have thought of these things-- for years now. I've stayed up nights pondering, have talked to everyone under the sun (including AB docs, PWD docs, and PWD docs in training). I've thought of the ways I'd adapt, and I've thought of my own physical stamina. My CP has been in flux over the past few years, but thanks to adaptations in mobility equipment and my own thought processes, I am stabilizing. I wouldn't go through with this until I felt resonably confident that I'd plateaued for a while or at least had the support system to deal with it if things change.

But the truth is, the pondering, what if's, and theorethicals only mean so much. I'll never know what I can and cannot do until I get there-- if I decide to get there. In terms of my physical functioning, I've gotten nothing but positive feedback from every doc I've spoken with. The physical ability is there, and it is my hope that the stamina will be there.

But again, I won't know unless I'm in the thick of it. Lots of people drop out of med school because they can't hack it, and the vast majority of them are AB. I taught myself how to walk after overhearing a doc tell my mom that I'd never do it, and no therapist should try it with me. If I can do that I'm sure I can find a way to adapt an OR rotation.

Congrats on getting your MPH. I did a dual MPH/MHSA 2 years ago while working full time. I did my dual MPH because I chickened out and decided not to apply to med school the first time around. However, it was one of the best experiences of my life. One of the greatest things about having it is that it adds breadth to your skillset so that if you no longer have the stamina to practice. So, if I go to med school and don't make it, I'll never be in limbo for a job-- my background is in policy, and Medicare will always need yet another person to save it.

Again, thanks for your thoughts.
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Old 09-24-2006, 10:15 PM #15
NJenn NJenn is offline
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Quote:
Originally Posted by AnnieCB View Post
I agree with everyone here. Last week, Livy's physiatrist recommended botox for her and when I asked if it hurt, she said it isn't so bad. I wondered to myself- How does she know?
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.
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Old 09-24-2006, 10:20 PM #16
NJenn NJenn is offline
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Quote:
Originally Posted by Lorilou View Post
I'm sure we can all tell stories of doctors who didn't "get it". I actually had a resident ask once what the "plastic thingees" on Noah's feet were
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.
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Old 09-24-2006, 10:38 PM #17
JoaD JoaD is offline
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Originally Posted by NJenn View Post
Just feeling this one out..Honestly, how would you guys feel about taking yourselves or one of your kiddos to a doc with CP-- and noticable CP at that. My fine motor skills are perfect (ie: could do botox, emg, etc safely), but have majorly messed up legs. I think it's one thing to say that people with disabilities can and should have any career they want, but it's another thing entirely when it actually happens. Jan Brunstrum, a doc in St. Louis, also has CP. I'm a bit more affected than she is.
Nic. 27, spastic diplegic, sometimes walks, sometimes rolls
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
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Old 09-24-2006, 10:42 PM #18
NJenn NJenn is offline
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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.
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Old 09-24-2006, 10:54 PM #19
JoaD JoaD is offline
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[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
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Old 09-24-2006, 10:56 PM #20
RathyKay RathyKay is offline
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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.
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