left shoe, right shoe

[Guest guest]

Read this one with your eyes closed!!!!!

[Guest guest]

Read this one with your eyes closed!!!!!

[Guest guest]

Read this one with your eyes closed!!!!!

[Guest guest]

I couldn't help but join in on this one. There are a lot of new people on

the list who don't know who I am. I'm a pediatrician/peds heme/onc doc and

the father of a son with Complex I and III deficiencies (very brief intro -

go to www.geocities.com/Heartland/Meadows/7865 if you want to know more. For

the purpose of this post, left shoe is doc talking, and right shoe is dad

talking.

left shoe:

1) we're all people just like everyone else. It's impossible for everyone to

get along with us and we don't expect to. All of us have good days and bad

days, and one never knows what we're going through personally (many patients

in my practice are totally shocked when they hear about Rhys and how well I

can function, especially with the way he was during the first 3 years of his

life).

2) there are 4 renowned centers in the North American Continent. They

include: Toronto Hospital for Sick Children, Columbia Hospital in NYC, The

Atlanta Connection (Wallace (Emory) who if memory serves me correctly

trained Shoffner (now ish Rite). Shoffner is the clinician/researcher,

and UCSD (host of the UMDF website). There are more and more people starting

to get interested in mito, and subsequently, there are some centers starting

to sprout up across the country. The way I, as a former oncologist (left

because of Rhys) look at things, the 4 premier sites should be the

" principal investigator sites " who train the rest of the medical community

(all the varied children's hospitals across the country. Problem with the

sprouting sites is that they think they're now experts (keep in mind that

these comments do not reflect on any individual doc/researcher/clinician),

and refuse to admit that they can't do everything. The medical world tends

to be EXTREMELY POLITICAL which is always at the patient's expense!!!

Both feet:

1) these lists are for support. However, as I've said from day one (going

back to the first blood bath that I had seen in cyberspace about 2 yrs ago),

electronic communication is strictly INSTANT GRATIFICATION. There is TOTAL

LACK of body language which silently communicates subtleties such as

concern, sarcasm, etc (the emotional part of the conversation). Please,

everyone take a deep breath before sending off your response to something

that seems to be potentially a VERY SENSITIVE issue. Over the history of ALL

the lists, many a newcomer (both to mito and to computers/support groups)

get totally scared off by the intensity of the posts. Needless to say,

controversy is always going to occur. But, at some point, people need to let

things go and get on with things. I hope that my post will help in that

direction, and if anyone wants to bite my head off, go right ahead. I've

been decapitated many more times than a cat has lives, and perhaps I'm more

like the Energizer Bunny <G>.

Right foot:

1) I have had more than my share of problems with insensitive docs with

humongous egos. I try to refrain from washing my laundry on these lists, and

tried to be politically correct on my website by leaving out which state I

live in and which centers we have dealt with up until the time that we got a

diagnosis. Suffice it to say, a Premier Site totally botched the entire

process, and even if they were just up the street, I absolutely REFUSE to

have any part of them. There are others that think the center walks on

water. There is no way anyone else can sway either opinion, so it would be a

waste of time and energy to try.

2) Docs sometimes have problems admitting that they're just as human as we

are, don't know everything, and sometimes don't even know how to say " I

don't know " . This doesn't happen often, and I'm not saying that any doc at

the Centers behave that way. In fact, more often than not, we as parents

want to " kill " them for not answering any of our ?'s with an answer other

than " I don't know the answer to that ? " .

3) It takes a certain skill, both in person and on paper (electronic or

real), to communicate an opinion in an unemotional way. Sometimes, something

has to be written and re-written many times. I've started to get the hang of

that when Rhys was born. If someone feels they're being attacked, they'll be

on the defensive. Try cornering a lion, tiger, or bear (oh my) and see what

happens. Not a very pretty picture indeed.

Both feet in unison:

1) these lists are for support, and have done a very good job (there will

always be growing pains, but generation by generation, people learn from

their mistakes.

2) be prepared for rebuttal, usually emotional, and then take a deep breath.

Realize that what you're responding to always may not be meant to be taken

at face-value before you respond. All our emotions run the gamut from being

totally depressed, feeling sorry for ourselves, feeling guilty about feeling

sorry for ourselves because our lot seems so much better than others on the

list.

3) be prepared for adult patients with mito, who can teach us a lot, who

don't necessarily get the support that they need from the list because we

parents take over, to remind us - their children - to not behave like

children ourselves.

Having said all that, we all need to vent, hopefully the venting is over,

and let's now move on. And yes, I'm willing to take any flack from any of

this. (Though having been through somewhere in the order of 5 World War's,

I'm glad that work has kept me too busy to get too involved).

Ken

[Guest guest]

Thank you Ken! That was the perfect end (hopefully) to the craziness.

Being a Dr. and also a parent who is going through the same thing, gives

you a unique perspective. I, personally, have a better understanding of

the whole set of issues.

Thanks,

[Guest guest]

Thank you Ken! That was the perfect end (hopefully) to the craziness.

Being a Dr. and also a parent who is going through the same thing, gives

you a unique perspective. I, personally, have a better understanding of

the whole set of issues.

Thanks,

[Guest guest]

Yes, lets get back to helping and supporting one another.

BTW-I have a copy of Lori Downs' letter she composed to use in getting

insurance coverage on items not " normally " covered. When one has a rare

disorder the ins co should review the situation under extra ordinary

conditions rather than what is " normal " for others who have a more

common, treatable condition.

Linna

Ken wrote:

>

>

>

> I couldn't help but join in on this one. There are a lot of new people on

> the list who don't know who I am. I'm a pediatrician/peds heme/onc doc and

> the father of a son with Complex I and III deficiencies (very brief intro -

> go to www.geocities.com/Heartland/Meadows/7865 if you want to know more. For

> the purpose of this post, left shoe is doc talking, and right shoe is dad

> talking.

>

> left shoe:

> 1) we're all people just like everyone else. It's impossible for everyone to

> get along with us and we don't expect to. All of us have good days and bad

> days, and one never knows what we're going through personally (many patients

> in my practice are totally shocked when they hear about Rhys and how well I

> can function, especially with the way he was during the first 3 years of his

> life).

>

> 2) there are 4 renowned centers in the North American Continent. They

> include: Toronto Hospital for Sick Children, Columbia Hospital in NYC, The

> Atlanta Connection (Wallace (Emory) who if memory serves me correctly

> trained Shoffner (now ish Rite). Shoffner is the clinician/researcher,

> and UCSD (host of the UMDF website). There are more and more people starting

> to get interested in mito, and subsequently, there are some centers starting

> to sprout up across the country. The way I, as a former oncologist (left

> because of Rhys) look at things, the 4 premier sites should be the

> " principal investigator sites " who train the rest of the medical community

> (all the varied children's hospitals across the country. Problem with the

> sprouting sites is that they think they're now experts (keep in mind that

> these comments do not reflect on any individual doc/researcher/clinician),

> and refuse to admit that they can't do everything. The medical world tends

> to be EXTREMELY POLITICAL which is always at the patient's expense!!!

>

> Both feet:

> 1) these lists are for support. However, as I've said from day one (going

> back to the first blood bath that I had seen in cyberspace about 2 yrs ago),

> electronic communication is strictly INSTANT GRATIFICATION. There is TOTAL

> LACK of body language which silently communicates subtleties such as

> concern, sarcasm, etc (the emotional part of the conversation). Please,

> everyone take a deep breath before sending off your response to something

> that seems to be potentially a VERY SENSITIVE issue. Over the history of ALL

> the lists, many a newcomer (both to mito and to computers/support groups)

> get totally scared off by the intensity of the posts. Needless to say,

> controversy is always going to occur. But, at some point, people need to let

> things go and get on with things. I hope that my post will help in that

> direction, and if anyone wants to bite my head off, go right ahead. I've

> been decapitated many more times than a cat has lives, and perhaps I'm more

> like the Energizer Bunny <G>.

>

> Right foot:

> 1) I have had more than my share of problems with insensitive docs with

> humongous egos. I try to refrain from washing my laundry on these lists, and

> tried to be politically correct on my website by leaving out which state I

> live in and which centers we have dealt with up until the time that we got a

> diagnosis. Suffice it to say, a Premier Site totally botched the entire

> process, and even if they were just up the street, I absolutely REFUSE to

> have any part of them. There are others that think the center walks on

> water. There is no way anyone else can sway either opinion, so it would be a

> waste of time and energy to try.

>

> 2) Docs sometimes have problems admitting that they're just as human as we

> are, don't know everything, and sometimes don't even know how to say " I

> don't know " . This doesn't happen often, and I'm not saying that any doc at

> the Centers behave that way. In fact, more often than not, we as parents

> want to " kill " them for not answering any of our ?'s with an answer other

> than " I don't know the answer to that ? " .

>

> 3) It takes a certain skill, both in person and on paper (electronic or

> real), to communicate an opinion in an unemotional way. Sometimes, something

> has to be written and re-written many times. I've started to get the hang of

> that when Rhys was born. If someone feels they're being attacked, they'll be

> on the defensive. Try cornering a lion, tiger, or bear (oh my) and see what

> happens. Not a very pretty picture indeed.

>

> Both feet in unison:

>

> 1) these lists are for support, and have done a very good job (there will

> always be growing pains, but generation by generation, people learn from

> their mistakes.

>

> 2) be prepared for rebuttal, usually emotional, and then take a deep breath.

> Realize that what you're responding to always may not be meant to be taken

> at face-value before you respond. All our emotions run the gamut from being

> totally depressed, feeling sorry for ourselves, feeling guilty about feeling

> sorry for ourselves because our lot seems so much better than others on the

> list.

>

> 3) be prepared for adult patients with mito, who can teach us a lot, who

> don't necessarily get the support that they need from the list because we

> parents take over, to remind us - their children - to not behave like

> children ourselves.

>

> Having said all that, we all need to vent, hopefully the venting is over,

> and let's now move on. And yes, I'm willing to take any flack from any of

> this. (Though having been through somewhere in the order of 5 World War's,

> I'm glad that work has kept me too busy to get too involved).

>

> Ken

>

> ---------------------------