Re: Help! I need some feedback

[Guest guest]

Barbara,

My gut reaction was that no way could my daughter or I do something like

this if only for the dysautonomia aspects that go with mito. A non-mito

person would have trouble adjusting there body mechanisms to that large

range of quick changes much less a mito body.

P.S. Good luck!

Barbara Seaman wrote:

>I posted this to the CPT group, but thought I might get some helpful

>feedback here, especially from people who have episodes of muscle breakdown.

>Any responses appreciated.

>

>Barbara

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

>

>Here's the problem: A certain adventurous son who shall remain nameless is

>dying to take a wild aerobatics plane ride as part of a vacation. His

>ancient Mummy is of two minds (proud he is so adventurous, scared he is TOO

>adventurous) and would like some honest input from other CPTers.

>

>First, the promo description of the ride:

>

> " Aerobatics is the ultimate roller coaster ride! You only live once and you

>haven't lived until you have flown upside down over the land, spiraled nose

>down towards the earth, looped the looped and barrel rolled your way across

>the skies.

>

> " Your pilot will test your courage as they explore the freedom to maneuver

>in three dimensions and complete a full routine of loops, rolls, stalls and

>dives whilst the G-forces compress and stretch your body.

>

> " Your plane for the aerobatics flight is a Pitts Special Biplane - a World

>War One style open cockpit aircraft. Your flight is a vigorous full

>aerobatics routine involving high 'G' forces and incredible maneuvers.

>Simply hang on to your hat (or should that be stomach), feel the wind in the

>wires and your silk scarf trailing in the slipstream.

>

> " You will experience a joy ride you will never forget in the Pitts Special.

>This aerobatics flight is not for the faint hearted - although it can be

>tamed down if you don't have 'iron guts'.

>

> " Due to the high performance nature of the Pitts we can't let you take the

>controls, but the ride is a wild one!

>

> " The Pitts Special Flight has a total turn around of 45 minutes. "

>

>http://www.adrenalin.com.au/aerobatics_flight_pitts_special_sydney_348_detai

>ls.aspx

>

>SO---the question is, what would this do to YOUR body, given the fact that

>you have CPT? Certainly sounds to me like it would give the muscles a good

>anaerobic workout, but shouldn't be aerobic, as nearly as I can tell, which

>would help. However, many eons ago I rode a Tilt-a-Whirl at Worlds of

>Fun---back when said son was a toddler and I was about his current age---and

>it took days for my muscles to recover from all the throwing around. This

>particular aerobatics ride would coincide with three weeks of a lot more

>walking than usual, so factor that into your response. Also factor in that

>walking all over London triggered a major episode for said son about five

>years ago.

>

>This mother does not have veto power, of course, but DOES have some

>influence. How to use it? That is the question.

>

>Barbara

>

>

>

>

>

>Medical advice, information, opinions, data and statements contained herein are

not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

>

>Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

>

>

[Guest guest]

Thanks, . He doesn't have dysautonomia fortunately, primarily

myopathy, but leads a normal life with certain restrictions. I know he would

feel some after effects, but not sure to what extent. He always did love

roller coasters though and has had a fascination with planes all his life.

As a kid, he always thought the plane ride was the best part of the

vacation. :-)

B

> My gut reaction was that no way could my daughter or I do something like

> this if only for the dysautonomia aspects that go with mito. A non-mito

> person would have trouble adjusting there body mechanisms to that large

> range of quick changes much less a mito body.

>

>

>

> P.S. Good luck!

[Guest guest]

I asked both of my girls and their responses were: 1)

let him have fun. 2) If you treat him too strictly he

may either do as he pleases when out of your control

(rebellious)or become severly depressed. 3) As long

as he doesn't have cardiac problems that would exclude

this type of activity, go with the flow. 4) They both

said he might end up with a headache as a result but,

if so, treat the headache appropriately with lots of

fluis and medication.

My girls have tried parasailing, go carts and many

roller coasters and love the thrill.

To be honest, I would rather have my girls determine

their respective body limits without my judgement as

they then come to respect those limits. If they ask

my opinion I will share it but that doesn't mean they

will always respect it. I would also rather have them

trying thrill type rides than experimenting with

smoking, alcohol or drugs. is very cautious

when it comes to thrill rides or roller coasters as

she doesn't like the way she feels afterward.

lies really likes them and may choose to " pay the

price " with a headache.

you have CPT? >

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

I have to smile reading this! I am thrilled to hear your girls have tried

parasailing and all kinds of other adventures. Yes yes yes. My philosophy

has always been to go for the gusto (minus the beer), live life as fully and

richly as possible and I'm thrilled to see that my son has adopted a similar

view. He is 31 and has been living on his own halfway across the country,

very successfully I might add, since college, has always been a good

decision maker re his health, sensible in spite of being adventurous, but

still likes input from his Mom on occasion. I comment only if asked, which

in this case I was. His EKG normalized with Carnitor and ribo in 1988 and

has stayed that way for years. I am most concerned about his skeletal

muscles and rhabomyolysis, though (unlike me) he has enjoyed roller coasters

with no problems. I doubt the G force would compare though. Come to think of

it, maybe I should ask him? :-) He's a mechanical engineer.

I think your girls are right on as far as what happens when parents are

overprotective in relation to their children's health problems and

limitations. Mostly I taught him to deal with illness by example as he was

growing up (we knew from an early age he had what I had) and used a very

light touch on guidance with limitations. We knew this was a life-long deal

for him and that he had to learn how to find his own boundaries and make his

own decisions and he has done that well.

I also know that because he asked for my opinion this time he is not sure

whether this venture would be wise. He'll make his own decision, as always,

but I do know my opinion matters to him and will influence him. That's why I

want to think carefully, which you guys always help me do.

Thanks much!

Barbara

> Re: Help! I need some feedback

>

> I asked both of my girls and their responses were: 1)

> let him have fun. 2) If you treat him too strictly he

> may either do as he pleases when out of your control

> (rebellious)or become severly depressed. 3) As long

> as he doesn't have cardiac problems that would exclude

> this type of activity, go with the flow. 4) They both

> said he might end up with a headache as a result but,

> if so, treat the headache appropriately with lots of

> fluis and medication.

>

> My girls have tried parasailing, go carts and many

> roller coasters and love the thrill.

>

> To be honest, I would rather have my girls determine

> their respective body limits without my judgement as

> they then come to respect those limits. If they ask

> my opinion I will share it but that doesn't mean they

> will always respect it. I would also rather have them

> trying thrill type rides than experimenting with

> smoking, alcohol or drugs. is very cautious

> when it comes to thrill rides or roller coasters as

> she doesn't like the way she feels afterward.

> lies really likes them and may choose to " pay the

> price " with a headache.

>

>

>

> you have CPT? >

>

>

>

> Joanne Kocourek (mom to , lies, and )

> visit us at: http://www.caringbridge.org/il/annakris

>

>

>

> Medical advice, information, opinions, data and statements contained

herein are

> not necessarily those of the list moderators. The author of this e mail is

entirely

> responsible for its content. List members are reminded of their

responsibility to

> evaluate the content of the postings and consult with their physicians

regarding

> changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the

attack.

>

>

[Guest guest]

Hi Sunny, Always appreciate your input. I'm with you in many ways, in that

at this point, I would NEVER consider traveling to Australia period, let

alone get in a WW I open cockpit plane and fly upside down! I doubt things

would ever look right side up again. But I love the idea that he loves such

adventures and, admittedly, I get a certain vicarious thrill out of seeing

him soar, literally and figuratively. SO I'm torn both ways. Thus my need

for wider input.

Number One Son definitely understands where I am physically, and though we

don't expect the same thing to happen to him for various reasons, it does

give him pause and some sense of caution, which is good. I'm sure that's one

reason why he wants input on this decision. Well, we shall see what happens.

Isn't life interesting?

Barbara

> I don't have CPT, so a generic answer here. As I developed more

> difficulties with chronic pain and possible spinal surgery necessary,

> I never thought I had an option. I hung up my riding boots, gave away

> my skiis and tennis racket. Why would I persue things that might cause

> me further damage? I DID continue to walk and ride a bike when

> possible, and generally stayed as active as I could, because that made

> me feel better, and I could gauge how much I could do. As I have

> posted before, I added very careful weight training to my activities

> about 3 years ago, but with an emphasis on careful. I still advocate

> it, because it can be started slowly, and the level of " physical

> stress " is entirely under each person's control. So, there is the rub

> for me - control - not enough in that fun - sounding activity. Not

> sure what it would do. And the ad for it was a bit high pitched. Not

> sure that I would trust that I would get any real information from an

> organization that uses language like that.

>

> I would guess that someone connected to the astronaut or a pilot

> program, etc would have real information as to what that kind of stuff

> does to a " normal " body. Maybe then you could extrapolate from there.

>

> Maybe if said son sees you going through all this he will - as an adult

> - weigh the question very very very carefully - and, as an adult - make

> his decision advisedly. (Of course, I mean, not to do it, lol)

>

> As always, Barabara, it is nice to see you.

>

> Sunny

[Guest guest]

---I respect and admire your sensitivity to your sons emotional

wellbeing. It is hard as a mother not to say DON " T DO IT. You may

want to be honest and tell your son how you really feel. That you

are really concerned, but do not want to stifle him from living life

to the fullest. He has to make his own choice! GOod luck!

Dawn Anich

In , " Barbara Seaman "

wrote:

>

> I posted this to the CPT group, but thought I might get some

helpful

> feedback here, especially from people who have episodes of muscle

breakdown.

> Any responses appreciated.

>

> Barbara

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

>

> Here's the problem: A certain adventurous son who shall remain

nameless is

> dying to take a wild aerobatics plane ride as part of a vacation.

His

> ancient Mummy is of two minds (proud he is so adventurous, scared

he is TOO

> adventurous) and would like some honest input from other CPTers.

>

> First, the promo description of the ride:

>

> " Aerobatics is the ultimate roller coaster ride! You only live

once and you

> haven't lived until you have flown upside down over the land,

spiraled nose

> down towards the earth, looped the looped and barrel rolled your

way across

> the skies.

>

> " Your pilot will test your courage as they explore the freedom to

maneuver

> in three dimensions and complete a full routine of loops, rolls,

stalls and

> dives whilst the G-forces compress and stretch your body.

>

> " Your plane for the aerobatics flight is a Pitts Special Biplane -

a World

> War One style open cockpit aircraft. Your flight is a vigorous full

> aerobatics routine involving high 'G' forces and incredible

maneuvers.

> Simply hang on to your hat (or should that be stomach), feel the

wind in the

> wires and your silk scarf trailing in the slipstream.

>

> " You will experience a joy ride you will never forget in the Pitts

Special.

> This aerobatics flight is not for the faint hearted - although it

can be

> tamed down if you don't have 'iron guts'.

>

> " Due to the high performance nature of the Pitts we can't let you

take the

> controls, but the ride is a wild one!

>

> " The Pitts Special Flight has a total turn around of 45 minutes. "

>

>

http://www.adrenalin.com.au/aerobatics_flight_pitts_special_sydney_34

8_detai

> ls.aspx

>

> SO---the question is, what would this do to YOUR body, given the

fact that

> you have CPT? Certainly sounds to me like it would give the

muscles a good

> anaerobic workout, but shouldn't be aerobic, as nearly as I can

tell, which

> would help. However, many eons ago I rode a Tilt-a-Whirl at Worlds

of

> Fun---back when said son was a toddler and I was about his current

age---and

> it took days for my muscles to recover from all the throwing

around. This

> particular aerobatics ride would coincide with three weeks of a

lot more

> walking than usual, so factor that into your response. Also factor

in that

> walking all over London triggered a major episode for said son

about five

> years ago.

>

> This mother does not have veto power, of course, but DOES have some

> influence. How to use it? That is the question.

>

> Barbara

>

[Guest guest]

I love everyone's answers here, I'm a few years older than 31 and

have been married for 15 years, but my dad still makes comments on my

judgement of what I can do and can't do, and what I must do

My favorite saying is " plan for the worst and hope for the best " .

Personally, I hate roller coasters etc., and even don't like log

flumes. Our local Six Flags has a roller coaster that goes upside

down, could you convince him to try one of those as a " test run " ? (or

maybe he has LOL)

I think it is nice he wants his mom's opinion on it, even at the ripe

old age of 31!

I suppose my only other advice is that he should plan it towards the

end of his trip, in case he has issues the whole trip won't be

ruined, and my generic traveling advice of finding some kind of mito

doc, or at least neurologist, where his trip will be, just to have

some kind of " safety net " . If that couldn't work, setting up a

medical info card for his wallet would be a great idea (if he doesn't

have one).

Take care,

RH

> >

> > I posted this to the CPT group, but thought I might get some

> helpful

> > feedback here, especially from people who have episodes of muscle

> breakdown.

> > Any responses appreciated.

> >

> > Barbara

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

> >

> > Here's the problem: A certain adventurous son who shall remain

> nameless is

> > dying to take a wild aerobatics plane ride as part of a vacation.

> His

> > ancient Mummy is of two minds (proud he is so adventurous, scared

> he is TOO

> > adventurous) and would like some honest input from other CPTers.

> >

> > First, the promo description of the ride:

> >

> > " Aerobatics is the ultimate roller coaster ride! You only live

> once and you

> > haven't lived until you have flown upside down over the land,

> spiraled nose

> > down towards the earth, looped the looped and barrel rolled your

> way across

> > the skies.

> >

> > " Your pilot will test your courage as they explore the freedom to

> maneuver

> > in three dimensions and complete a full routine of loops, rolls,

> stalls and

> > dives whilst the G-forces compress and stretch your body.

> >

> > " Your plane for the aerobatics flight is a Pitts Special Biplane -

> a World

> > War One style open cockpit aircraft. Your flight is a vigorous

full

> > aerobatics routine involving high 'G' forces and incredible

> maneuvers.

> > Simply hang on to your hat (or should that be stomach), feel the

> wind in the

> > wires and your silk scarf trailing in the slipstream.

> >

> > " You will experience a joy ride you will never forget in the

Pitts

> Special.

> > This aerobatics flight is not for the faint hearted - although it

> can be

> > tamed down if you don't have 'iron guts'.

> >

> > " Due to the high performance nature of the Pitts we can't let you

> take the

> > controls, but the ride is a wild one!

> >

> > " The Pitts Special Flight has a total turn around of 45 minutes. "

> >

> >

>

http://www.adrenalin.com.au/aerobatics_flight_pitts_special_sydney_34

> 8_detai

> > ls.aspx

> >

> > SO---the question is, what would this do to YOUR body, given the

> fact that

> > you have CPT? Certainly sounds to me like it would give the

> muscles a good

> > anaerobic workout, but shouldn't be aerobic, as nearly as I can

> tell, which

> > would help. However, many eons ago I rode a Tilt-a-Whirl at

Worlds

> of

> > Fun---back when said son was a toddler and I was about his

current

> age---and

> > it took days for my muscles to recover from all the throwing

> around. This

> > particular aerobatics ride would coincide with three weeks of a

> lot more

> > walking than usual, so factor that into your response. Also

factor

> in that

> > walking all over London triggered a major episode for said son

> about five

> > years ago.

> >

> > This mother does not have veto power, of course, but DOES have

some

> > influence. How to use it? That is the question.

> >

> > Barbara

> >

>

[Guest guest]

I loved all the answers too. In the CPT group, it prompted a discussion of

risk taking, which is tricky for a lot of CPTers---and mito-ers too, for

that matter. The " worst " with CPT can be pretty bad, especially in a foreign

country. In this case, I do know the name of a CPT doctor in Sydney if he

needs one, and I reminded him of this in a joking sort of way. That's the

closest I will get to saying, " Be careful, you may get more excitement than

you wish for! " He remembers only too well how scary it was to be in London,

alone, and very ill. And he will be traveling alone on this trip too. Since

the London incident five years ago, he has carried a letter written by Dr.

Haas when he travels, in case he needs emergency care. He also has a medical

card that we designed for his particular needs and he has emergency info on

his cell phone, which he will carry. That's about the best we can do.

Yep, he's been on many upside down roller coasters and has no problem with

them at all. Always wants to go back for more. A born thrill-lover who gets

car sick in the back seat. Go figure.

Barbara

> I love everyone's answers here, I'm a few years older than 31 and

> have been married for 15 years, but my dad still makes comments on my

> judgement of what I can do and can't do, and what I must do

>

> My favorite saying is " plan for the worst and hope for the best " .

> Personally, I hate roller coasters etc., and even don't like log

> flumes. Our local Six Flags has a roller coaster that goes upside

> down, could you convince him to try one of those as a " test run " ? (or

> maybe he has LOL)

>

> I think it is nice he wants his mom's opinion on it, even at the ripe

> old age of 31!

>

> I suppose my only other advice is that he should plan it towards the

> end of his trip, in case he has issues the whole trip won't be

> ruined, and my generic traveling advice of finding some kind of mito

> doc, or at least neurologist, where his trip will be, just to have

> some kind of " safety net " . If that couldn't work, setting up a

> medical info card for his wallet would be a great idea (if he doesn't

> have one).

>

> Take care,

> RH

[Guest guest]

Hi Barbara

I'm not even sure what CPT is, exactly, but I can't help but comment from

the perspective of a late-diagnosed mito sufferer.

I personally wouldn't go on this, mainly because I would likely get dizzy

and worse, and one can't just GET OFF THE RIDE. But then, nowadays, I

wouldn't even go on the Tilt-a-Whirl...heck, even some elevators upset me,

briefly.

But OTHERWISE I wouldn't be too concerned, except for one part: the high-G

forces. That means two things to me (1) sustained high-G (pulling out from a

power dive) which can cause blackout, and (2) sudden high-G which means

jerking around. I really fear blackout, just generally don't like the sense

of even coming close to it, and also I'm concerned for my ability to breathe

while unconscious. I'm assuming that the sustained high-G will come nowhere

near the threshold for trained fighter pilots, but I'd worry that my mito

would make me a LOT more susceptible. I'd be most worried about neck trauma,

though. I'm guessing that otherwise, the body will be seriously constrained

(cinched in across the waist and shoulders).

As I sit here with severe constant headache, and lately (last few months)

spells of new unusual neck pains, I can't imagine how I'd feel if I thought

there were even a chance that this was directly caused or exacerbated by

something I deliberately did, when I was warned about it and did it anyway.

On the other hand, I too am VERYadventurous, and also believe that some

" egdy " things are worth doing. I've made my share of mistakes though, and

I'm now at least a little bit more cautious. For example, I still walk

alone, sometimes many miles out onto an uninhabitated barrier island of sand

dunes, in the winter in a raging gale, knowing that it will be pitch black

and colder on my return. BUT I also carry marine signal flares, a cell

phone, a two-way marine radio, TWO flashlights and spare batteries, space

blanket and EXTRA hat, gloves, and socks, and of course my emergency contact

and treatment info. :-)

I think if I were not prone to dizziness, I would go on this plane ride. It

sounds thrilling, and BASICALLY safe. Ideally I would want to bring a padded

but tight-fitting neck brace. I would assume they wouldn't let me on board

WEARING this, so I would try to smuggle it on somehow.

But I think I would much prefer knowing that I could recuperate, if needed,

at home soon after. If I do too many straight days of considerable walking,

I get progressively worse, too. Maybe it would depend on when this plane

ride will be, in the course of your three weeks. As you say, the plane ride

would not be aerobically demanding, at least.

I taught my wife, and some others, to enjoy the sometimes bumpy high-speed

ride of a motorboat over waves, by imagining riding a horse. Not so much

splinting up all muscles to resist the bumps, but deliberately relaxing into

them, sort of loosely rolling with them. Takes a reminder now and again,

definitely an acquired attitude, but it works.

Steve D.

Date: Sun, 6 Nov 2005 09:52:38 -0600

Subject: Help! I need some feedback

I posted this to the CPT group, but thought I might get some helpful

feedback here, especially from people who have episodes of muscle breakdown.

Any responses appreciated.

Barbara

-----------------

Here's the problem: A certain adventurous son who shall remain nameless is

dying to take a wild aerobatics plane ride as part of a vacation. His

ancient Mummy is of two minds (proud he is so adventurous, scared he is TOO

adventurous) and would like some honest input from other CPTers.

First, the promo description of the ride:

" Aerobatics is the ultimate roller coaster ride! You only live once and you

haven't lived until you have flown upside down over the land, spiraled nose

down towards the earth, looped the looped and barrel rolled your way across

the skies.

" Your pilot will test your courage as they explore the freedom to maneuver

in three dimensions and complete a full routine of loops, rolls, stalls and

dives whilst the G-forces compress and stretch your body.

" Your plane for the aerobatics flight is a Pitts Special Biplane - a World

War One style open cockpit aircraft. Your flight is a vigorous full

aerobatics routine involving high 'G' forces and incredible maneuvers.

Simply hang on to your hat (or should that be stomach), feel the wind in the

wires and your silk scarf trailing in the slipstream.

" You will experience a joy ride you will never forget in the Pitts Special.

This aerobatics flight is not for the faint hearted - although it can be

tamed down if you don't have 'iron guts'.

" Due to the high performance nature of the Pitts we can't let you take the

controls, but the ride is a wild one!

" The Pitts Special Flight has a total turn around of 45 minutes. "

http://www.adrenalin.com.au/aerobatics_flight_pitts_special_sydney_348_detai

ls.aspx

SO---the question is, what would this do to YOUR body, given the fact that

you have CPT? Certainly sounds to me like it would give the muscles a good

anaerobic workout, but shouldn't be aerobic, as nearly as I can tell, which

would help. However, many eons ago I rode a Tilt-a-Whirl at Worlds of

Fun---back when said son was a toddler and I was about his current age---and

it took days for my muscles to recover from all the throwing around. This

particular aerobatics ride would coincide with three weeks of a lot more

walking than usual, so factor that into your response. Also factor in that

walking all over London triggered a major episode for said son about five

years ago.

This mother does not have veto power, of course, but DOES have some

influence. How to use it? That is the question.

Barbara

[Guest guest]

> Hi Barbara

>

> I'm not even sure what CPT is, exactly, but I can't help but comment from

> the perspective of a late-diagnosed mito sufferer.

>

> I personally wouldn't go on this, mainly because I would likely get dizzy

> and worse, and one can't just GET OFF THE RIDE. But then, nowadays, I

> wouldn't even go on the Tilt-a-Whirl...heck, even some elevators upset me,

> briefly.

Well, #1 son has a good head for heights, no problem with dizziness

normally--I emphasize *normally* here. Me, if I get from my office to the

bathroom without falling into the wall I'm happy. I note the promo says

riders must be 18, but I wonder if they shouldn't have some upper limit?

Older bodies just aren't as bendable or repairable. I'm reminded of this

every morning.

> But OTHERWISE I wouldn't be too concerned, except for one part: the high-G

> forces. That means two things to me (1) sustained high-G (pulling out from

a

> power dive) which can cause blackout, and (2) sudden high-G which means

> jerking around. I really fear blackout, just generally don't like the

sense

> of even coming close to it, and also I'm concerned for my ability to

breathe

> while unconscious. I'm assuming that the sustained high-G will come

nowhere

> near the threshold for trained fighter pilots, but I'd worry that my mito

> would make me a LOT more susceptible. I'd be most worried about neck

trauma,

> though. I'm guessing that otherwise, the body will be seriously

constrained

> (cinched in across the waist and shoulders).

Yes, definitely constrained in multiple ways. I'm sure they don't want

people suing for injuries. Yes, it's the G forces that worry me. That's the

unknown in my mind. Might be fine for him, I just don't know.

> As I sit here with severe constant headache, and lately (last few months)

> spells of new unusual neck pains, I can't imagine how I'd feel if I

thought

> there were even a chance that this was directly caused or exacerbated by

> something I deliberately did, when I was warned about it and did it

anyway.

Guilty, idiotic, rueful, chastened, humble---need I go on? (I'm speaking

from personal experience.)

> On the other hand, I too am VERYadventurous, and also believe that some

> " egdy " things are worth doing. I've made my share of mistakes though, and

> I'm now at least a little bit more cautious. For example, I still walk

> alone, sometimes many miles out onto an uninhabitated barrier island of

sand

> dunes, in the winter in a raging gale, knowing that it will be pitch black

> and colder on my return. BUT I also carry marine signal flares, a cell

> phone, a two-way marine radio, TWO flashlights and spare batteries, space

> blanket and EXTRA hat, gloves, and socks, and of course my emergency

contact

> and treatment info. :-)

Sort of like setting out on an arctic expedition. The grand adventurer. In

fact, it must be quite an adventure figuring out how to even move, carrying

all that paraphernalia.

Next time I set out for an expedition to the doctor's office, I'll salute

Steve, the intrepid explorer.

Barbara

[Guest guest]

Hi Barbara - just curious - why would you never consider traveling to Australia?

pamela downunder...

RE: Help! I need some feedback

Hi Sunny, Always appreciate your input. I'm with you in many ways, in that

at this point, I would NEVER consider traveling to Australia period, let

alone get in a WW I open cockpit plane and fly upside down! ....

[Guest guest]

In a message dated 11/9/2005 10:29:06 AM Eastern Standard Time,

wheatchild@... writes:

BTW, I have online links for all his itinerary tours and stops, so I will

" travel " vicariously! We will also get a deluge of pictures, of course, when

he returns.

Hi Barbara,

I think it's wonderful that your son has such an adventurous personality. I

have taken the attitude of trying to accomplish things now in my life, while

I can, b/c who knows what the future will bring for me. I can see my body

declining just over the past 2-3 yrs and when I look back to 10 yrs ago, there

were many things I could do then that I can't do now.

My husband and I just got back from our honeymoon on a two week cruise from

Philadelphia to the Caribbean. We went to 6 islands and went parasailing,

horseback riding in the ocean, snorkeling, jet skiing, and sailing on a

catamaran. Most of those activities probably would not have been recommended

for me,

especially with my central line. My TPN was hooked up during the

parasailing and horseback riding. People have asked how in the world I did so

many

things when I have so little energy---it was really difficult and I was

literally dragging my body around in 90+ degree weather, going from activity

to

activity. But, I knew I would never have this opportunity again. If your son

wants to live his life to the fullest, let him " go for it " . If he has a chance

of getting worse over his lifetime, he may never have the opportunity to do

this again. I would just be sure he has an emergency protocol from his doctor

outlining the complications that can occur from CPT and what to do in case

they happen. This could help him tremendously if he runs into trouble. Has he

talked to Dr Haas about what he's doing? He may have some practical

suggestions for ways to ward off the complications of rhabdomyolysis before he

jumps

out of the plane.

Hope he has fun! Please update us on what he decides to do and how he does

with it.

Also, for updates and pictures from our honeymoon, you can visit my website

at: _www.caringbridge.org/pa/malisa_ (http://www.caringbridge.org/pa/malisa)

Malisa

[Guest guest]

Oh Pamela! It's not that I wouldn't love to, but I'm much too sick, I'm

afraid. My condition is fragile enough that any small changes in schedule

make things much worse and then I'm too sick to get home. Not good. Even

my traveling within the US has been greatly limited for years. But I'm 60

and have been sick for 40 years. At my son's age, I did travel the world.

In fact, we lived in Turkey for 2 years. So in many ways, he is just

following our footsteps.

BTW, I have online links for all his itinerary tours and stops, so I will

" travel " vicariously! We will also get a deluge of pictures, of course, when

he returns.

Cheers!

Barbara

> Hi Barbara - just curious - why would you never consider traveling to

Australia?

> pamela downunder...

[Guest guest]

Malisa

It sounds like your honeymoon was great. I'm so glad you got to do so

many things.

laurie

>

> In a message dated 11/9/2005 10:29:06 AM Eastern Standard Time,

> wheatchild@... writes:

>

> BTW, I have online links for all his itinerary tours and stops, so I will

> " travel " vicariously! We will also get a deluge of pictures, of course,

> when

> he returns.

>

>

>

>

> Hi Barbara,

> I think it's wonderful that your son has such an adventurous personality.

> I

> have taken the attitude of trying to accomplish things now in my life,

> while

> I can, b/c who knows what the future will bring for me. I can see my body

> declining just over the past 2-3 yrs and when I look back to 10 yrs ago,

> there

> were many things I could do then that I can't do now.

>

> My husband and I just got back from our honeymoon on a two week cruise from

>

> Philadelphia to the Caribbean. We went to 6 islands and went parasailing,

> horseback riding in the ocean, snorkeling, jet skiing, and sailing on a

> catamaran. Most of those activities probably would not have been

> recommended for me,

> especially with my central line. My TPN was hooked up during the

> parasailing and horseback riding. People have asked how in the world I

> did so many

> things when I have so little energy---it was really difficult and I was

> literally dragging my body around in 90+ degree weather, going from

> activity to

> activity. But, I knew I would never have this opportunity again. If your

> son

> wants to live his life to the fullest, let him " go for it " . If he has a

> chance

> of getting worse over his lifetime, he may never have the opportunity to

> do

> this again. I would just be sure he has an emergency protocol from his

> doctor

> outlining the complications that can occur from CPT and what to do in case

> they happen. This could help him tremendously if he runs into trouble.

> Has he

> talked to Dr Haas about what he's doing? He may have some practical

> suggestions for ways to ward off the complications of rhabdomyolysis

> before he jumps

> out of the plane.

>

> Hope he has fun! Please update us on what he decides to do and how he does

> with it.

> Also, for updates and pictures from our honeymoon, you can visit my

> website

> at: _www.caringbridge.org/pa/malisa_

> (http://www.caringbridge.org/pa/malisa)

> Malisa

>

>

>

[Guest guest]

In a message dated 11/10/2005 8:48:17 AM Eastern Standard Time,

Danich1@... writes:

You have me inspired to go on a cruise soon. I have been talking to

my husband about taking my daughter on her 16th birthday. Carissa

does not turn 16 for another year and 7 months, so I have some time

to save.

Hi Dawn,

I think your daughter would love a cruise. I went on Disney cruises when I

was 22 and both my (now) husband and I really enjoyed it. If she likes Disney,

that may be a good one to go on. We went on Norwegian which was fun, but

didn't have a lot of families--mostly older people.

Malisa

[Guest guest]

>

>Malisa, It is great that you got to do so much on your honeymoon. I

really like your attitude. I think people question why I have a

handicap parking sticker, yet I went to SIx flags and whitewater

rafting with my kids over the summer. They do not realize that my

energy is limited and I would rather use it to walk in the store vs

to the store.

I hope you do not have to pay too much for all of this activity!

Even if, I know you will never regret it. You will have these

wonderful memories forever. What a wonderful way to start out a

marriage.

You have me inspired to go on a cruise soon. I have been talking to

my husband about taking my daughter on her 16th birthday. Carissa

does not turn 16 for another year and 7 months, so I have some time

to save.

Dawn Anich

Dawn Anich

> In a message dated 11/9/2005 10:29:06 AM Eastern Standard Time,

> wheatchild@n... writes:

>

> BTW, I have online links for all his itinerary tours and stops,

so I will

> " travel " vicariously! We will also get a deluge of pictures, of

course, when

> he returns.

>

>

>

>

> Hi Barbara,

> I think it's wonderful that your son has such an adventurous

personality. I

> have taken the attitude of trying to accomplish things now in my

life, while

> I can, b/c who knows what the future will bring for me. I can

see my body

> declining just over the past 2-3 yrs and when I look back to 10

yrs ago, there

> were many things I could do then that I can't do now.

>

> My husband and I just got back from our honeymoon on a two week

cruise from

> Philadelphia to the Caribbean. We went to 6 islands and went

parasailing,

> horseback riding in the ocean, snorkeling, jet skiing, and sailing

on a

> catamaran. Most of those activities probably would not have been

recommended for me,

> especially with my central line. My TPN was hooked up during the

> parasailing and horseback riding. People have asked how in the

world I did so many

> things when I have so little energy---it was really difficult and

I was

> literally dragging my body around in 90+ degree weather, going

from activity to

> activity. But, I knew I would never have this opportunity again.

If your son

> wants to live his life to the fullest, let him " go for it " . If

he has a chance

> of getting worse over his lifetime, he may never have the

opportunity to do

> this again. I would just be sure he has an emergency protocol

from his doctor

> outlining the complications that can occur from CPT and what to do

in case

> they happen. This could help him tremendously if he runs into

trouble. Has he

> talked to Dr Haas about what he's doing? He may have some

practical

> suggestions for ways to ward off the complications of

rhabdomyolysis before he jumps

> out of the plane.

>

> Hope he has fun! Please update us on what he decides to do and how

he does

> with it.

> Also, for updates and pictures from our honeymoon, you can visit

my website

> at: _www.caringbridge.org/pa/malisa_

(http://www.caringbridge.org/pa/malisa)

> Malisa

>

>

>

[Guest guest]

Hi Malissa, Clap clap clap clap!!! I am in awe. What a perfectly matched

pair of adventurerers! I absolutely agree that this is the time to do those

things and stash those memories, as you may not get a chance later. And I

did visit your web site and have it bookmarked now so I can check for

updates. I love seeing your smiling faces.

No, #1 son has not consulted Dr. Haas on the plane ride G-force question. I

wish he would but this is where Mom-of-adult-son has to keep hands off and

mouth shut.

Just this morning I had an email from him and he HAS decided to GO FOR IT!

Made a reservation for the plane ride the very last day he is in Australia.

His rationale: " I figure I'll go out with a bang! " :-) Actually, I think

this is wise. Maybe it was Steve who suggested putting it at the end, so

that if there is a problem it won't ruin the whole vacation. This is my

thinking too, though I had not said as much to him, of course. Oh, I've been

SO good, keeping my mouth shut, not that it was easy......

Barbara

> Hi Barbara,

> I think it's wonderful that your son has such an adventurous personality.

I

> have taken the attitude of trying to accomplish things now in my life,

while

> I can, b/c who knows what the future will bring for me. I can see my

body

> declining just over the past 2-3 yrs and when I look back to 10 yrs ago,

there

> were many things I could do then that I can't do now.

>

> My husband and I just got back from our honeymoon on a two week cruise

from

> Philadelphia to the Caribbean. We went to 6 islands and went parasailing,

> horseback riding in the ocean, snorkeling, jet skiing, and sailing on a

> catamaran. Most of those activities probably would not have been

recommended

> for me,

> especially with my central line. My TPN was hooked up during the

> parasailing and horseback riding. People have asked how in the world I

did so

> many

> things when I have so little energy---it was really difficult and I was

> literally dragging my body around in 90+ degree weather, going from

activity to

> activity. But, I knew I would never have this opportunity again. If your

son

> wants to live his life to the fullest, let him " go for it " . If he has a

chance

> of getting worse over his lifetime, he may never have the opportunity to

do

> this again. I would just be sure he has an emergency protocol from his

doctor

> outlining the complications that can occur from CPT and what to do in case

> they happen. This could help him tremendously if he runs into trouble.

Has he

> talked to Dr Haas about what he's doing? He may have some practical

> suggestions for ways to ward off the complications of rhabdomyolysis

before he

> jumps

> out of the plane.

>

> Hope he has fun! Please update us on what he decides to do and how he does

> with it.

> Also, for updates and pictures from our honeymoon, you can visit my

website

> at: _www.caringbridge.org/pa/malisa_

(http://www.caringbridge.org/pa/malisa)

> Malisa

>

[Guest guest]

Hi Dawn,

I agree with Malisa completely. We are leavign fo a 7 night Disney Cruise to

the US Virgin Islands Saturday. My girls can't wait. They offer some reaaly

good specials if you can go off peak!

Joanne Kocourek (mom to , lies, and )

visit us at: http://www.caringbridge.org/il/annakris

[Guest guest]

Barbara if your son is coming to Sydney I can give you my contact details if you

like in case he is ill, to make sure he gets the right care. There are some

good hospitals here. pamelama33@...

Re: Help! I need some feedback

Barbara

I hope your son has a terrific trip and that you and hubby enjoy it too.

laurie

> Oh Pamela! It's not that I wouldn't love to, but I'm much too sick, I'm

> afraid. My condition is fragile enough that any small changes in schedule

> make things much worse and then I'm too sick to get home. Not good. Even

> my traveling within the US has been greatly limited for years. But I'm 60

> and have been sick for 40 years. At my son's age, I did travel the world.

> In fact, we lived in Turkey for 2 years. So in many ways, he is just

> following our footsteps.

>

> BTW, I have online links for all his itinerary tours and stops, so I will

> " travel " vicariously! We will also get a deluge of pictures, of course,

> when

> he returns.

>

>

[Guest guest]

Sounds like great fun. Thanks for sharing. I loved the pictures. You

look radiant. Shelby

>

> In a message dated 11/9/2005 10:29:06 AM Eastern Standard Time,

> wheatchild@... writes:

>

> BTW, I have online links for all his itinerary tours and stops, so I

> will

> " travel " vicariously! We will also get a deluge of pictures, of

> course, when

> he returns.

>

>

>

>

> Hi Barbara,

> I think it's wonderful that your son has such an adventurous

> personality. I

> have taken the attitude of trying to accomplish things now in my

> life, while

> I can, b/c who knows what the future will bring for me. I can see my

> body

> declining just over the past 2-3 yrs and when I look back to 10 yrs

> ago, there

> were many things I could do then that I can't do now.

>

> My husband and I just got back from our honeymoon on a two week cruise

> from

> Philadelphia to the Caribbean. We went to 6 islands and went

> parasailing,

> horseback riding in the ocean, snorkeling, jet skiing, and sailing on a

> catamaran. Most of those activities probably would not have been

> recommended for me,

> especially with my central line. My TPN was hooked up during the

> parasailing and horseback riding. People have asked how in the world

> I did so many

> things when I have so little energy---it was really difficult and I

> was

> literally dragging my body around in 90+ degree weather, going from

> activity to

> activity. But, I knew I would never have this opportunity again. If

> your son

> wants to live his life to the fullest, let him " go for it " . If he

> has a chance

> of getting worse over his lifetime, he may never have the opportunity

> to do

> this again. I would just be sure he has an emergency protocol from

> his doctor

> outlining the complications that can occur from CPT and what to do in

> case

> they happen. This could help him tremendously if he runs into

> trouble. Has he

> talked to Dr Haas about what he's doing? He may have some practical

> suggestions for ways to ward off the complications of rhabdomyolysis

> before he jumps

> out of the plane.

>

> Hope he has fun! Please update us on what he decides to do and how he

> does

> with it.

> Also, for updates and pictures from our honeymoon, you can visit my

> website

> at: _www.caringbridge.org/pa/malisa_

> (http://www.caringbridge.org/pa/malisa)

> Malisa

>

>

>