Re: ignorance of mito in emergency care

[Guest guest]

The only thing I can offer is to get yourself a medic alert brand

bracelet. The bracelet itself has a couple of key pieces of into and a

number to call for more details that you provide medic alert to give out

in case of emergency.

Steve wrote:

>On this theme of ignorance, I am concerned about ignorance of mito IN

>EMERGENCY CARE. There are issues (meds, anesthesia, and others) that I wish

>to communicate, in case of sudden collapse.

>

>I live on Cape Cod, in Massachusetts, and I have always been extremely

>active in small boating. I have had to give that up because there are just

>too many times when I have to exert myself, like launching from a trailer or

>dealing with something, such as getting stuck in shallows, or when the

>weather worsens (or capsizing in my sunfish!). How I wish I could find the

>right boating partner, but that's another story.

>

>I've discovered that I'm more or less OK with very EVEN exertion, like

>walking. I build up slowly, as I walk, knowing my body and how far and fast

>I can go. Best is walking on level ground, which works for me on the beach.

>The ONLY way I can get a considerable and generally safe exercise nowadays

>is to walk a long way, which I do in almost all weather. I really enjoy the

>wild outdoors, properly dressed, during storms and/or winter (I've seen many

>seals, coyotes, etc.). Any anyway, it's only off-season that I can bring my

>true friend, my black lab-pointer. I'm married, but my wife (my other true

>friend) can rarely join me. On occasion I've tried to drum up a walking

>partner, but who wants to go in crazy weather, at my slow pace, for

>rendering help if I collapse? That's asking a lot.

>

>However, I have had " attacks " where I suddenly get very dizzy and sometimes

>even collapse. Usually I can watch for impending signs and head this off,

>but not always. This might happen when I'm alone somewhere in public. I'm

>especially concerned that this will happen when I've walked way out (on rare

>occasions, even several miles) at my favorite beach. I'm still understanding

>this, but I gather these attacks are lactic acidosis. I've so far recovered

>on my own, requiring several hours at least. I've also had inconclusive

>chest pains.

>

>So in the meantime (until all mito disorders are really cured?) I'm very

>loathe to give up my walks, but I also worry. I always carry a cell phone,

>and hand-launched boating flares, when I walk. Any suggestions or feedback?

>

>I've composed a one-page mito-specific " open letter to whoever finds me

>unconscious or incoherent " . :-) or is that :-( ? I've thought of keeping it

>on my person and also wearing a bracelet that suggests looking on me for

>this note. I'm not sure if I'm covering the right points, or if it really

>matters all that much. My wife thinks that EMTs, and even E-R docs, will

>likely read such a note only if it's five words or less. Opinions? Shall I

>post my note here, for peer review?

>

>Steve D.

>

>

>

>

>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]

I have a Medic Alert necklace and I keep my Medic Alert information

file updated with current medications, diagnoses, special concerns.

I also have an emergency packet for ER. The packet has been very

helpful in the past. You might also consider having your doctor

write an emergency protocol that is tailored to your needs and carry

it. My son carries a letter from his doctor when he travels. He had

a medical emergency once in London and after that Dr. Haas wrote a

letter for him to carry so he could get appropriate medical care as

needed.

Barbara

>

> >On this theme of ignorance, I am concerned about ignorance of

mito IN

> >EMERGENCY CARE. There are issues (meds, anesthesia, and others)

that I wish

> >to communicate, in case of sudden collapse.

> >

> >I live on Cape Cod, in Massachusetts, and I have always been

extremely

> >active in small boating. I have had to give that up because there

are just

> >too many times when I have to exert myself, like launching from a

trailer or

> >dealing with something, such as getting stuck in shallows, or

when the

> >weather worsens (or capsizing in my sunfish!). How I wish I could

find the

> >right boating partner, but that's another story.

> >

> >I've discovered that I'm more or less OK with very EVEN exertion,

like

> >walking. I build up slowly, as I walk, knowing my body and how

far and fast

> >I can go. Best is walking on level ground, which works for me on

the beach.

> >The ONLY way I can get a considerable and generally safe exercise

nowadays

> >is to walk a long way, which I do in almost all weather. I really

enjoy the

> >wild outdoors, properly dressed, during storms and/or winter

(I've seen many

> >seals, coyotes, etc.). Any anyway, it's only off-season that I

can bring my

> >true friend, my black lab-pointer. I'm married, but my wife (my

other true

> >friend) can rarely join me. On occasion I've tried to drum up a

walking

> >partner, but who wants to go in crazy weather, at my slow pace,

for

> >rendering help if I collapse? That's asking a lot.

> >

> >However, I have had " attacks " where I suddenly get very dizzy and

sometimes

> >even collapse. Usually I can watch for impending signs and head

this off,

> >but not always. This might happen when I'm alone somewhere in

public. I'm

> >especially concerned that this will happen when I've walked way

out (on rare

> >occasions, even several miles) at my favorite beach. I'm still

understanding

> >this, but I gather these attacks are lactic acidosis. I've so far

recovered

> >on my own, requiring several hours at least. I've also had

inconclusive

> >chest pains.

> >

> >So in the meantime (until all mito disorders are really cured?)

I'm very

> >loathe to give up my walks, but I also worry. I always carry a

cell phone,

> >and hand-launched boating flares, when I walk. Any suggestions or

feedback?

> >

> >I've composed a one-page mito-specific " open letter to whoever

finds me

> >unconscious or incoherent " . :-) or is that :-( ? I've thought of

keeping it

> >on my person and also wearing a bracelet that suggests looking on

me for

> >this note. I'm not sure if I'm covering the right points, or if

it really

> >matters all that much. My wife thinks that EMTs, and even E-R

docs, will

> >likely read such a note only if it's five words or less.

Opinions? Shall I

> >post my note here, for peer review?

> >

> >Steve D.

> >

> >

> >

> >

> >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]

Steve

Medic Alert also gives you information (more extensive than on the bracelet)

that I keep in my wallet. If you go this route, think about getting the

titanium if you have any problems with metals at all, since it is on all the

time.

laurie

>

> Reply-To:

> Date: Tue, 28 Sep 2004 14:25:16 -0700

> To:

> Subject: Re: ignorance of mito in emergency care

>

> The only thing I can offer is to get yourself a medic alert brand

> bracelet. The bracelet itself has a couple of key pieces of into and a

> number to call for more details that you provide medic alert to give out

> in case of emergency.

>

>

>

> Steve wrote:

>

>> On this theme of ignorance, I am concerned about ignorance of mito IN

>> EMERGENCY CARE. There are issues (meds, anesthesia, and others) that I wish

>> to communicate, in case of sudden collapse.

>>

>> I live on Cape Cod, in Massachusetts, and I have always been extremely

>> active in small boating. I have had to give that up because there are just

>> too many times when I have to exert myself, like launching from a trailer or

>> dealing with something, such as getting stuck in shallows, or when the

>> weather worsens (or capsizing in my sunfish!). How I wish I could find the

>> right boating partner, but that's another story.

>>

>> I've discovered that I'm more or less OK with very EVEN exertion, like

>> walking. I build up slowly, as I walk, knowing my body and how far and fast

>> I can go. Best is walking on level ground, which works for me on the beach.

>> The ONLY way I can get a considerable and generally safe exercise nowadays

>> is to walk a long way, which I do in almost all weather. I really enjoy the

>> wild outdoors, properly dressed, during storms and/or winter (I've seen many

>> seals, coyotes, etc.). Any anyway, it's only off-season that I can bring my

>> true friend, my black lab-pointer. I'm married, but my wife (my other true

>> friend) can rarely join me. On occasion I've tried to drum up a walking

>> partner, but who wants to go in crazy weather, at my slow pace, for

>> rendering help if I collapse? That's asking a lot.

>>

>> However, I have had " attacks " where I suddenly get very dizzy and sometimes

>> even collapse. Usually I can watch for impending signs and head this off,

>> but not always. This might happen when I'm alone somewhere in public. I'm

>> especially concerned that this will happen when I've walked way out (on rare

>> occasions, even several miles) at my favorite beach. I'm still understanding

>> this, but I gather these attacks are lactic acidosis. I've so far recovered

>> on my own, requiring several hours at least. I've also had inconclusive

>> chest pains.

>>

>> So in the meantime (until all mito disorders are really cured?) I'm very

>> loathe to give up my walks, but I also worry. I always carry a cell phone,

>> and hand-launched boating flares, when I walk. Any suggestions or feedback?

>>

>> I've composed a one-page mito-specific " open letter to whoever finds me

>> unconscious or incoherent " . :-) or is that :-( ? I've thought of keeping it

>> on my person and also wearing a bracelet that suggests looking on me for

>> this note. I'm not sure if I'm covering the right points, or if it really

>> matters all that much. My wife thinks that EMTs, and even E-R docs, will

>> likely read such a note only if it's five words or less. Opinions? Shall I

>> post my note here, for peer review?

>>

>> Steve D.

>>

>>

>>

>>

>> 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]

Steve

I wear a Medic Alert bracelet and have the additional information in my

wallet which I try to have on me (I'm usually in my wheelchair). I have also

given instructions and a copy of the " Think Mito " booklet to the hospital.

Our hospital has a program where they give you a card to keep in your

wallet. If an EMT responds (never needed it to date) then they call the

hospital when they see the card and get the info. Otherwise, I would also

give the information to our ambulance service. Between the bracelet and

hospital info, I hope I am covered.

I know it would take you away from nature, but is there a mall you can walk

in and then spend time just relaxing in nature. We have a mall that opens at

6:00AM for walkers. It is a nice time to be with people even if it is only

to say hi when you pass one another. Once every week, the Red Cross has

someone there between 6:30 and 8:30 to take blood pressures and pulse

readings if you want them.

laurie

>

> Reply-To:

> Date: Tue, 28 Sep 2004 16:10:02 -0400

> To: >

> Subject: ignorance of mito in emergency care

>

> On this theme of ignorance, I am concerned about ignorance of mito IN

> EMERGENCY CARE. There are issues (meds, anesthesia, and others) that I wish

> to communicate, in case of sudden collapse.

>

> I live on Cape Cod, in Massachusetts, and I have always been extremely

> active in small boating. I have had to give that up because there are just

> too many times when I have to exert myself, like launching from a trailer or

> dealing with something, such as getting stuck in shallows, or when the

> weather worsens (or capsizing in my sunfish!). How I wish I could find the

> right boating partner, but that's another story.

>

> I've discovered that I'm more or less OK with very EVEN exertion, like

> walking. I build up slowly, as I walk, knowing my body and how far and fast

> I can go. Best is walking on level ground, which works for me on the beach.

> The ONLY way I can get a considerable and generally safe exercise nowadays

> is to walk a long way, which I do in almost all weather. I really enjoy the

> wild outdoors, properly dressed, during storms and/or winter (I've seen many

> seals, coyotes, etc.). Any anyway, it's only off-season that I can bring my

> true friend, my black lab-pointer. I'm married, but my wife (my other true

> friend) can rarely join me. On occasion I've tried to drum up a walking

> partner, but who wants to go in crazy weather, at my slow pace, for

> rendering help if I collapse? That's asking a lot.

>

> However, I have had " attacks " where I suddenly get very dizzy and sometimes

> even collapse. Usually I can watch for impending signs and head this off,

> but not always. This might happen when I'm alone somewhere in public. I'm

> especially concerned that this will happen when I've walked way out (on rare

> occasions, even several miles) at my favorite beach. I'm still understanding

> this, but I gather these attacks are lactic acidosis. I've so far recovered

> on my own, requiring several hours at least. I've also had inconclusive

> chest pains.

>

> So in the meantime (until all mito disorders are really cured?) I'm very

> loathe to give up my walks, but I also worry. I always carry a cell phone,

> and hand-launched boating flares, when I walk. Any suggestions or feedback?

>

> I've composed a one-page mito-specific " open letter to whoever finds me

> unconscious or incoherent " . :-) or is that :-( ? I've thought of keeping it

> on my person and also wearing a bracelet that suggests looking on me for

> this note. I'm not sure if I'm covering the right points, or if it really

> matters all that much. My wife thinks that EMTs, and even E-R docs, will

> likely read such a note only if it's five words or less. Opinions? Shall I

> post my note here, for peer review?

>

> Steve D.

>

>

>

> 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]

I just wanted to add to what everyone else suggested. I too have a

medical alert necklace that says basic emergency info and then

refers to my wallet for additional info. The info in my wallet is

something that I type on the computer so that I can change

medication information as needed. Plus, I can print out a copy of

my medications any time I have an appointment or it looks like I

need to go to ER. So, that's something I would recommend with you.

Type something up and save it so that it can be modified as needed

based on your condition.

Additionally, I too have changed my exercise routine to walking and

some light back exercises and dumbells. Since I was concerned about

being far away from home on a day when I wasn't as strong (like you

I could be a couple of miles from home) I decided to invest in a

treadmill. This allows me to get off immediately if there is any

indication of a problem. The other option is an exercise bike.

Granted, it's not a walk on the beach...and for me it's not a walk

through the woods down to the river, but at least I can continue

exercising safely.

I liked Laurie's suggestion about the mall too. I walk in a

downtown area or other populated area which allows me to have people

contact. It's important for our mental health to not be isolated.

I also have dogs that I walk with and as great as they are, they

aren't people. If you walk downtown or at a mall somewhere you

won't need to worry about collapsing.

Best of luck !

bug