Re: Barry~Update

November 30, 2004

Tonya,

you are an true inspiration and an amazing woman. I am so glad Barry has

you and that you are a part of our lives.

I hope the diet works and Barry improves.

December 1, 2004

Tonya,

My heart goes out to you. You are such an inspirational person

to me. I hope that the new diet gives Barry some extra energy. Please

take care of yourself.

Hugs,

a

On Tue, 30 Nov 2004 22:34:37 -0800 (PST) Maddie Green

ladymaddie@...> writes:

Hello Friends ,

Been awhile since I wrote out to the list. I have

been trying to work as many days as possible. With

Christmas coming, I am taking everything they are

giving me,which in most weeks is everyday 10-12 hrs a

day. I have been going like this now for 3 weeks ,

this doesnt leave much time for email

Ok , Update on Barry.

Nothing has changed except for the negitive.

His seizures have come back with a vengance. Hes

having them daily and they are coming back to back

with Cardiac Seizures included. Yesterday he didnt

have any , so I am in hopes that they are gonna stop

again. I changed his diet and put him back on

low-carb , no refined sugars and this is when he does

the best. So fingers crossed.

The one thing now with the Heart problems is his

breathing is worse also. But only when he has a

seizure. Otherwise he is at full lung capacity.

He is sleeping on an average 16hrs a day. I am in

hopes also that his sleeping will be less once his

diet is in full effect which will take about 3 to 4

weeks.

No one is here to care for him while I am gone so it

is in God's hands now. I like when he sleeps this

much sometimes because then I dont have to worry about

him.

I sure do miss him though. I am alone now with all I

do. Today I went and met and his wife Dawn and

Barry was very sad he couldnt come. He told me he

didnt think he had enough energy to even walk to the

car. His poor mother thinks he has deserted her. He

never even talks on the phone anymore. He doesnt have

enough energy to even sit and talk for too long.

Amazing how much we take for granted sitting and

talking on the phone seems like it is nothing , to him

it is a task. Alot of times now he will say to me

" Tonya , I just dont feel like talking, so you can

talk to me and I will listen " . So I just sit and yack

at him ......I can tell when hes not good, cause of

the expressions on his face. After living with

someone you get to know their every move.

As a caregiver I have also given up so much of my

life, but he thanks me everyday , so I am never in

resentment because I know he appreciates everything I

do for him. I just feel like I have lost myself

sometimes in all the madness of maintaining a

household by myself. It is strange because I feel

like a single parent and I am by myself all the time.

I do everything and never miss a beat. I really wish

sometimes I could run away for a weekend with a

girlfriend and just relax and chit chat, I have

forgotten who I am in this whole 4 yr process. But

then again , nothing worth doing is ever easy. I do

know now what it is to have had true love , the way

God intended for a man and a woman. I guess I just

didnt expect the sickness till death do you part to

happen so quickly. Teaches us to make the most of

everyday , and to take nothing for granted. The

things I miss about Barry are simple, I miss him

hugging me , and dancing with me, I miss him being

strong both in body and mind. And even after all this

time I miss him walking through the door in his

uniform after a hard days work. He looked so handsome

in his uniform and work boots. My heart cries for

what we were , but my soul does remember. I am in

constant grieving for him, because even though he is

still alive , what he was is dead.

Thanks for listening......it is almost 2am and I have

to be up at 6am for the kids, and then off to work

till 7 at night .......amazing where I get the

strength to keep going, but I do.

Goodnight my Friends.

Tonya

Ps. we will get together as soon as Barry can

maintain somewhat of a normal day. He is gonna call

you sometime tomorrow, he wants to hear about your

appointment. He smiled today when I told him your

appointment was good and Dr Simpson is gonna take care

of you.

December 1, 2004

Hi Tonya,

Thank you so much for thinking of us even with your very busy schedule. I'm

sorry you didn't have better news about Barry but hearing from you helps us to

know how things are going at your house. I do understand what Barry means when

he doesn't have the energy to talk on the phone. It does seem that he's

sleeping a lot so I wonder if he's getting enough fluids. With you not being

there, there's no way you can know how much he's getting. Depression could also

be a reason for all that sleep along with Mito but fluids are so important to

our bodies and I know that I have no energy at all if I don't keep the fluids

going every single day. I can even tell when I need to go drink 16 oz of water.

I drink at least four 16 oz bottles of water a day - one first thing in the

morning when I wake up.

I hope the diet works and commend you for all you have done for Barry and how

you have held your family together. Have you made contact with the Hospice

Agency that Pat contacted for you to come in and care for him some of the time?

They might be able to help you get the fluids into him too but they certainly

can help the total picture.

Please take care and stay in touch.

Alice

December 1, 2004