Dewayne-long

[Guest guest]

Hi to all,

Email problems have kept me from getting lots of post....if I have ignored

individual messages, I will get to you I promise. I didn't realize I had

problems because my only sister has just had 3 surprise bypasses on her heart

this past week. Didn't check my email and when I did.....none came.

Dewayne's breathing is getting worse and worse. We've had a very bad month so

far. We do go to the Drs tomorrow to follow up the sleep study and then see his

neuro. The methadone and the 4800 mg of Neurontin has become useless.....well I

won't say useless....can't imagine what he'd be like without the drugs.

Unfortunately his mind is going so fast too. He is making dangerous decisions

and has no sense of judgment. His father stays with him while I'm

working....I'm having to explain things to him just as I do our 6 year old son.

I miss him so bad....I just want to talk with him, discuss our day, make future

plans. Well we kinda did that tonight....talked about the will and want to do

with certain pieces of farm equipment....not what I meant when I said the

future.

When I walked in from work this evening and saw how labored his breathing was

and how bad he looked, it hit me that this could be the beginning of the end. I

thought I was so strong and was ready for anything, but I guess I'm not.....I

reckon I've been kidding myself thinking everything is going to get

better....guess I needed that false hope to keep myself halfway sane.

Well now, I didn't mean to go on and on....babbling like a broken record. I

know there are a lot out there worse than our situation. I think I am exhausted

and emotional about my sister too.

Thanks though for letting me rant. I love all of you out there and just pray

that one day there will be a cure for this blasted thing of a disease.

Love and prayers, Lynda R.

[Guest guest]

Lynda

Sorry I sent this before I read all of the mail

I am so sorry about DW

Duane is having trouble breathing also I e-mailed his Dr and his Dr told me

that air hunger was physiological which thru me, but that is why he wont

give him oxygen, and this is a mito DR so go figure.

I don't know, Duane is understanding about at a 5 year old level at this

point, and I know how you feel about missing him I want to talk to Duane

also but he cant even follow a show on TV any more, this disease is so sad,

if we go any where I have to take his wheel chair.

Please keep in touch

Love & Hugs Jan

Dewayne-long

> Hi to all,

> Email problems have kept me from getting lots of post....if I have ignored

individual messages, I will get to you I promise. I didn't realize I had

problems because my only sister has just had 3 surprise bypasses on her

heart this past week. Didn't check my email and when I did.....none came.

> Dewayne's breathing is getting worse and worse. We've had a very bad

month so far. We do go to the Drs tomorrow to follow up the sleep study and

then see his neuro. The methadone and the 4800 mg of Neurontin has become

useless.....well I won't say useless....can't imagine what he'd be like

without the drugs. Unfortunately his mind is going so fast too. He is

making dangerous decisions and has no sense of judgment. His father stays

with him while I'm working....I'm having to explain things to him just as I

do our 6 year old son. I miss him so bad....I just want to talk with him,

discuss our day, make future plans. Well we kinda did that

tonight....talked about the will and want to do with certain pieces of farm

equipment....not what I meant when I said the future.

> When I walked in from work this evening and saw how labored his breathing

was and how bad he looked, it hit me that this could be the beginning of the

end. I thought I was so strong and was ready for anything, but I guess I'm

not.....I reckon I've been kidding myself thinking everything is going to

get better....guess I needed that false hope to keep myself halfway sane.

> Well now, I didn't mean to go on and on....babbling like a broken record.

I know there are a lot out there worse than our situation. I think I am

exhausted and emotional about my sister too.

> Thanks though for letting me rant. I love all of you out there and just

pray that one day there will be a cure for this blasted thing of a disease.

> Love and prayers, Lynda R.

>

>

>

[Guest guest]

((Lynda))

My heart just goes out to you. I've continued to pray for all of your

family. If there is anything I can please don't hesitate to ask me. You are

such a strong women and I know that God will continue to give you strength as

you go through these hard times.

Love and Hugs,

[Guest guest]

Dear Lynda,

I'm glad you took a few minutes of your very precious time to let us know how

things are going at your house. Please know my heart reaches out to you as I am

sure that there is not a minute of your day that isn't full of stress and fear.

You have responsibilities that I'm sure you never anticipated and the decisions

you are having to make are not easy. It sounds from this post as if you are

doing very well in this area. I am hoping that you have found a way to take

some time for yourself - as hard as this may be. You have to remember that you

are important here too even if it means requesting some respite or home care and

you will need to be strong in your request for this. I'm glad that Dwayne's

father can come in and help when you are working and probably work is a break

from the care taking at home but it's not the kind of break you are needing. If

you haven't stressed your own needs, please do this before you become ill

yourself.

About Dwayne - I'm so very sorry to read about this decline. Hopefully today,

you will have some answers regarding this from the sleep study that will help

with the labored breathing you found when you came in from work. I suspect that

the meds may be clouding his mind along with the Mito but as you say, they are

needed. What a miserable circle! I'm sure he is unable to make wise decisions

and that his judgment is poor. I know you miss the supporting husband and

father who you love so much. It's good that you took the time to talk about

things that are important to you.

Believe me, you are a very strong woman. Many women would have packed their

belongings and left under the stress, but you have been by his side and managed

the family needs unselfishly while watching your husband's health slip away

while caring for him all the time. This is indeed a mighty strength.

Please never apologize for " babbling, " ranting or venting as we are here for you

and no apologies are necessary. Everyone needs a release of the pressure

somewhere and you have been under some very extreme pressure. The added stress

of your sister's sudden needs would be the breaking point for many. I sincerely

hope she is recuperating well and her difficulties will be a thing of the past.

I saw a post recommending that you fight for a scooter for Dwayne. I noticed

that there was mention of a neurologist who is recommending that Dwayne remain

on his feet and not become dependent on mobility aides. If this is the only

neurologist you can see, he needs an awakening. Instead of telling him about

Dwayne, you might tell him about your own needs. Share with him that you are

not physically able to manage everything and need some help with Dwayne. It

sounds as if he is not really familiar with Mito and many of these doctors do

not like to be given (or don't want to take the time to read) the reports that

show the need to reserve energy in one area to preserve another thus prioritize.

There does come a point when mobility aids are necessary. If he has not been

given these reports, you may need to print them and take them to the next

appointment with the neurologist. If you have a primary care physician, a visit

for yourself explaining your own needs might prompt a letter to the neuro,

especially if this is Dwayne's PCP. Gathering up some inner strength and being

open with these doctors about Your needs should make them realize that they are

caring for more than one person here. Don't take no for an answer. If you need

to write down everything you are feeling, everything you are doing every minute

of the day and specifics by the hour of a 24 hour day - do it. Make a time log

and let them read. It's like building a case for yourself and Dwayne.

I know what I've written here is long and probably seems like just too much to

do. You can only take one step at a time so if you can read thru this and

underline what you think will help the most, perhaps I've provided just a little

bit of help.

Just know, I care and that we are here for you 24 hours a day.

Many hugs!

Alice

[Guest guest]

Dear Lynda,

I can only echo Alice's eloquence and very cogent advice. She is, as

usual, a very wise woman.

I am so sorry for what this disease is putting you, your family and your

precious husband through. As Alice said, please try to also watch out

for your own very real needs. There is only so much that one faithful

spouse can do by herself or by himself.

Perhaps there is respite care available in your area. I know that many

churches have members who will gladly give you a hand.

Sending you all warmest wishes and prayers. I wish I could do more.

God bless.

Sincerely,

PA

[Guest guest]

Lynda,

My heart goes out to you and to Dewayne. I don't have much to

add, as so many have given you such words of wisdom. Just know that we

are always here for you whenever you need to vent or " babble " . It is

okay to do that. You need to take care of yourself as well. Please know

you are in my thoughts and prayers.

Hugs,

a

On Thu, 26 Aug 2004 00:12:37 -0400 " Lynda and Dewayne Rose "

rosefarm@...> writes:

Hi to all,

Email problems have kept me from getting lots of post....if I have

ignored individual messages, I will get to you I promise. I didn't

realize I had problems because my only sister has just had 3 surprise

bypasses on her heart this past week. Didn't check my email and when I

did.....none came.

Dewayne's breathing is getting worse and worse. We've had a very bad

month so far. We do go to the Drs tomorrow to follow up the sleep study

and then see his neuro. The methadone and the 4800 mg of Neurontin has

become useless.....well I won't say useless....can't imagine what he'd be

like without the drugs. Unfortunately his mind is going so fast too. He

is making dangerous decisions and has no sense of judgment. His father

stays with him while I'm working....I'm having to explain things to him

just as I do our 6 year old son. I miss him so bad....I just want to

talk with him, discuss our day, make future plans. Well we kinda did

that tonight....talked about the will and want to do with certain pieces

of farm equipment....not what I meant when I said the future.

When I walked in from work this evening and saw how labored his breathing

was and how bad he looked, it hit me that this could be the beginning of

the end. I thought I was so strong and was ready for anything, but I

guess I'm not.....I reckon I've been kidding myself thinking everything

is going to get better....guess I needed that false hope to keep myself

halfway sane.

Well now, I didn't mean to go on and on....babbling like a broken record.

I know there are a lot out there worse than our situation. I think I am

exhausted and emotional about my sister too.

Thanks though for letting me rant. I love all of you out there and just

pray that one day there will be a cure for this blasted thing of a

disease.

Love and prayers, Lynda R.

[Guest guest]

Lynda

I am so sorry that Dewayne is getting worse. That has got to be scary for

you. Please come to the list and ask for hugs or whatever we can do for you.

Hugs,

laurie

>

> Reply-To:

> Date: Thu, 26 Aug 2004 00:12:37 -0400

> To: >

> Subject: Dewayne-long

>

> Hi to all,

> Email problems have kept me from getting lots of post....if I have ignored

> individual messages, I will get to you I promise. I didn't realize I had

> problems because my only sister has just had 3 surprise bypasses on her heart

> this past week. Didn't check my email and when I did.....none came.

> Dewayne's breathing is getting worse and worse. We've had a very bad month so

> far. We do go to the Drs tomorrow to follow up the sleep study and then see

> his neuro. The methadone and the 4800 mg of Neurontin has become

> useless.....well I won't say useless....can't imagine what he'd be like

> without the drugs. Unfortunately his mind is going so fast too. He is making

> dangerous decisions and has no sense of judgment. His father stays with him

> while I'm working....I'm having to explain things to him just as I do our 6

> year old son. I miss him so bad....I just want to talk with him, discuss our

> day, make future plans. Well we kinda did that tonight....talked about the

> will and want to do with certain pieces of farm equipment....not what I meant

> when I said the future.

> When I walked in from work this evening and saw how labored his breathing was

> and how bad he looked, it hit me that this could be the beginning of the end.

> I thought I was so strong and was ready for anything, but I guess I'm

> not.....I reckon I've been kidding myself thinking everything is going to get

> better....guess I needed that false hope to keep myself halfway sane.

> Well now, I didn't mean to go on and on....babbling like a broken record. I

> know there are a lot out there worse than our situation. I think I am

> exhausted and emotional about my sister too.

> Thanks though for letting me rant. I love all of you out there and just pray

> that one day there will be a cure for this blasted thing of a disease.

> Love and prayers, Lynda R.

>

>

>

[Guest guest]

Dear , What a difficult time for you and Dwayne. Wish I could do

something for you. I will be thinking of and praying for you both,

Love celia

- In , " Lynda and Dewayne Rose "

wrote:

> Hi to all,

> Email problems have kept me from getting lots of post....if I have

ignored individual messages, I will get to you I promise. I didn't

realize I had problems because my only sister has just had 3 surprise

bypasses on her heart this past week. Didn't check my email and when

I did.....none came.

> Dewayne's breathing is getting worse and worse. We've had a very

bad month so far. We do go to the Drs tomorrow to follow up the sleep

study and then see his neuro. The methadone and the 4800 mg of

Neurontin has become useless.....well I won't say useless....can't

imagine what he'd be like without the drugs. Unfortunately his mind

is going so fast too. He is making dangerous decisions and has no

sense of judgment. His father stays with him while I'm working....I'm

having to explain things to him just as I do our 6 year old son. I

miss him so bad....I just want to talk with him, discuss our day, make

future plans. Well we kinda did that tonight....talked about the

will and want to do with certain pieces of farm equipment....not what

I meant when I said the future.

> When I walked in from work this evening and saw how labored his

breathing was and how bad he looked, it hit me that this could be the

beginning of the end. I thought I was so strong and was ready for

anything, but I guess I'm not.....I reckon I've been kidding myself

thinking everything is going to get better....guess I needed that

false hope to keep myself halfway sane.

> Well now, I didn't mean to go on and on....babbling like a broken

record. I know there are a lot out there worse than our situation. I

think I am exhausted and emotional about my sister too.

> Thanks though for letting me rant. I love all of you out there and

just pray that one day there will be a cure for this blasted thing of

a disease.

> Love and prayers, Lynda R.

>

>

>