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> Temera

> who is feeling so positive at 5 AM!!!

Way to go Temera, your doing great!!!! : )

Bev

who wishes she could be more positive at 5am, but is

doing much better at getting up in the morning and

working out before work.

__________________________________________________

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> My new motto of the year was " I am tired of being tired " and this

year I am taking care of myself!!!

>

Great motto, Temera! You've really got the right attitude and

determination to feel better, and I have no doubt you will succeed.

Ann Marie

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  • 2 weeks later...

Have you talked to your pediatrician. He is a bit old to not be eating any

solid foods. Did he eat them and then stop. I breastfed all three of mine but

weaning wasnot a problem. They were happy to stop because they liked food so

much!! It may be a screaming match, which can be painful for you, but if you

take away the breast he will not starve. He will eat something.

I would talk to your pediatrician and get his/her suggestions.

good luck, I am struggling with potty training, my will be 3 tomarrow, son.

He is impossible and frankly is not interested in peeing in the pot!!

temera

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  • 1 month later...
Guest guest

OK

thanks

> I did as you suggested and talked to the Pharmacy manager at

> Walgreens, forget Eckerd's as we have strange people that work there

> and they can't get anything right. I've used Walgreens for over 7

> years and was surprised with this problem. Hopefully this will clear

> it up, we shall see. I am due to refill tomorrow and had doc write

> the script for 15mg, 2 twice a day as the last time I had the 30 mg

> Rx both Eckerds and Walgreens said they ordered it but when I called

> they didn't have it, order did not go through etc. etc. ad

> nauseaum..... Cross your fingers.

> Jami,

> I take hearings in Jax at the Soc. Security office...any where near

> you? email me your phone # so the next time I'm that way we can do

> lunch.

> thanks all..

> Peggy/Fl

>

>

>

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>

>

>

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Guest guest

whats with all the conflict already. It scares me. I have never had

problems with my prescriptions before. My Doc said she was ready to cause

some real hary-carey.......

Now I can relax. //they also apologized for the mix-up. The person at

Walgreens who continues to treat me like a 1960's acid freak. Oh how I hate

all of the accusatory looks ..I was never an acid dropper or a pot

smoker....Darnn maybe I should have been. Well now I can move on to relax

and use my energy for healing. Thanks for all of the support. Alice

wseone56 in Southern CA. Los Angeles County .......

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  • 10 months later...

---

,

I hope you have great fun at your wedding! will be looking forward to

hearing from you upon your return!

Darcy

In chronic_pain@y..., " peach_1234 " <peach_1234@y...> wrote:

> To Darcy, Ray, Robbie, and everyone else...thank you for

>

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  • 1 year later...
Guest guest

> I know that the exercise Yuck! is good for me.

There are lots and lots of things to do for exercise. I hate many

and love some. Keep trying things. When you find something you

really enjoy you will keep doing it. Your kids seeing you enjoy it

will be more motivated themselves.

- Dan

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Guest guest

Exercise is healing for me, not only the actual time spent but the

results. The result of looking great is the best revenge, I have

been walking miles daily with my 5 year old grandson riding his

bike. What a great time of bonding we are having. He is the best

company. we have been all over a University Campus, in

neighborhoods, shopping centers and he learns about everything we are

seeing.

Vicki

> > I know that the exercise Yuck! is good for me.

>

> There are lots and lots of things to do for exercise. I hate many

> and love some. Keep trying things. When you find something you

> really enjoy you will keep doing it. Your kids seeing you enjoy it

> will be more motivated themselves.

>

> - Dan

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Guest guest

I remember doing that with my kids. Enjoy it, as they grow up, they would

rather walk with their friends.

Re: Thanks

Exercise is healing for me, not only the actual time spent but the

results. The result of looking great is the best revenge, I have

been walking miles daily with my 5 year old grandson riding his

bike. What a great time of bonding we are having. He is the best

company. we have been all over a University Campus, in

neighborhoods, shopping centers and he learns about everything we are

seeing.

Vicki

> > I know that the exercise Yuck! is good for me.

>

> There are lots and lots of things to do for exercise. I hate many

> and love some. Keep trying things. When you find something you

> really enjoy you will keep doing it. Your kids seeing you enjoy it

> will be more motivated themselves.

>

> - Dan

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  • 5 months later...

In a message dated 9/26/2003 11:43:40 PM Eastern Daylight Time,

jjrecla@... writes:

> One of the saddist things I feel is those times when Mom truly

> does understand what is going on around her, and when others often

> do not realize the abilities of disabled person. At times it

> really takes me back and I truly wonder, " Is Mom as bad as I think

> she is " ? or am I just thinking it is truly worse than it seems.

>

Dear Joanne:

Yes, they keep their mental abilities a good part of the time. They are able

to figure out a lot that is not said. Unfortunatelly at other times, the

dementia takes over and they have delusions, halucinations, agitation, etc. We

tried to keep my dad's environment as he had always known it, maintain his

status in the family, but it was very sad.

It is very nice to come to this site and share our experiences. My dad is

gone for almost six weeks, and I enjoy to be able to share and help, if I can,

it gives me peace.

God bless you,

Josie

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In a message dated 9/26/2003 11:43:40 PM Eastern Daylight Time,

jjrecla@... writes:

> One of the saddist things I feel is those times when Mom truly

> does understand what is going on around her, and when others often

> do not realize the abilities of disabled person. At times it

> really takes me back and I truly wonder, " Is Mom as bad as I think

> she is " ? or am I just thinking it is truly worse than it seems.

>

Dear Joanne:

Yes, they keep their mental abilities a good part of the time. They are able

to figure out a lot that is not said. Unfortunatelly at other times, the

dementia takes over and they have delusions, halucinations, agitation, etc. We

tried to keep my dad's environment as he had always known it, maintain his

status in the family, but it was very sad.

It is very nice to come to this site and share our experiences. My dad is

gone for almost six weeks, and I enjoy to be able to share and help, if I can,

it gives me peace.

God bless you,

Josie

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Joanne,

Your message was very resonant for me. I find myself struggling with

the idea of what is Mom able to do, what is good and right for me to

do for her and what is she able and, in fact, needing to do for

herself. Now as we get more involved in making choices about where

she'll live and how to use the resources that she has for her care it

becomes more and more complex. And in all that complexity are many

amazing life lessons. Thanks for writing. One of the many reasons

why it's so wonderful to have this group -- the feeling of knowing

you are not going through it alone. :)

> > > I don't say it often, but it is nice to come to this sight

> and know that others truly do understand what this disease is all

> about. Being into it and dealing with it for 3+ years has given

> me new realizations about what is truly important and what I used

> to think was important. I am alway glad to visit with anyone about

> where we have been with this disease, and it isn't over until it is

> over. One of the saddist things I feel is those times when Mom

truly

> does understand what is going on around her, and when others often

> do not realize the abilities of disabled person. At times it

> really takes me back and I truly wonder, " Is Mom as bad as I think

> she is " ? or am I just thinking it is truly worse than it seems.

> Have a nice day---and ask any questions; there are many of us

willing

> to touch on a subject if we have been there. To each and every

> one of you out there, have a nice day, and remember to remember

> you know and then. Joanne in Oregon

>

>

> > >

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  • 1 month later...

Hi, Virginia,

It is so wonderful that you found our group! Your English is fabulous! It

is an added bonus that we have Josie. I have no idea what she told you, but I

am sure it was nice. Now ya''ll better not be telling secrets to each other

about the rest of us!

I am so sorry about your husband. You are so brave to have been fighting

this battle all by yourself. I hope you will post often and let us know how

things are going. I am sending big hugs and strength your way.

Piper

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I was telling someone about the group and I said that there were members all

round the world. Then I corrected myself because everything is in English

which makes things a bit difficult for non English speaking people.

Well you just made me think again. I don't think it's impolite to welcome

people in their own language. I think it's great!

Re: Thanks

Dear :

Thank you, I felt so impolite by writing my message and no translation,

but I

had to go to an appointment and didn't have time for it. Unfortunatelly I

only have the two languages. I better get going on the translation.

I read your post to Jan. Here in Miami we are at 84 degrees F., about 27

degrees C, which is perfect for me. Norway must be really, really cold by

now!

I don't mind the cold as much as the cold humidity, and cannot do without

my

sunshine!!! One full day of cloudiness makes me all blue! Your photos

are

magnificent. Good luck with your camera hunting for whales and other

great

creatures, have great trip, a hug, Josie

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Hi, Virginia,

My dad takes a medicine for his rigidity called Sinemet( generic form is

Carbidopa/Levodopa). It has worked very well for him. However, each patient

responds to medicines very differently. Some people in the group have had good

experiences with it, and some have not. Hang in there!

Hugs,

Piper

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Welcome to the group Virginia.

I'm so sorry that you had to go through all that to get a proper diagnosis.

I'm hoping that some day in the near future anyone can walk into a doctor's

office anywhere in the world and that doctor will know about LBD.

Courage

Thanks

>Hello:

>

>First, I want to excuse me for my " english " , I hope you can understand me.

I'm spanish, I live in the Balear island of Ibiza. My husband was diagnosed

of Parkinson 7 years ago, I tried to get information about PD in the Web, as

musch that I readed I realized that he had not PD. There's only one

neurologist in the island, when I told him that he had not the same

reactions with Synemet than normal PD (on-off)... he treated as I had

psycological problems pretending to know more than a doctor.

>

>I took my husband to Barcelona, we visited a neurologist specialised in PD,

after one hour with my husband, he said that could be AMS, not sure, the

diagnosis sure was only possible post morten.

>

> Come back to Ibiza doctor with the inform, he said that for him was a PD,

that's all. He did not any examination. This kind of doctors think that if

you're diagnosed with PD or LBD is the same, because you're going to die.

>

>After one year he was getting worse, I decided again to go to a private

neurologist at Barcelona's Clinic Teknon. It was a shock for me, they did

an " apomorphine test " , a neuropsycological test, and after four days he was

diagnosed LBD.

>I learn from the Web about LBD, I started to understand many things.

>

>He cannot move now, he sleeps most of the day, falls, so many thinks that

when I read your emails I recognised. For the last two years I've not

neurologist, I don't want to visit again the Ibiza neurologist (he cannot

fly ), I've only a general doctor (I give her information from the Web about

LBD)

>Now he takes Synemet twice a day (breakfast, lunch), Syntron for the blood

(he had two tromboflebitis), Exelon twice, Zypresa at night,

antidepression...

>

>He's 73, I'm 48 and we've a 18 years old daughter, she's studing in

Barcelona's university. I've an ecuatorian boy at home, that takes care of

him when I'm working, the weekend I'm alone with him. It's hard.

>

>I want to thank you for all the help that you bring me in your emails, it

was a hard way for us to know what we were living.

>

>Again thanks to all of you.

>

>

>Virginia Maldonado.

>

>

>

>

>

>

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Dear Virginia:

Your husband's fall reminded me of my dad. He fell a lot and because he was

taking blood thinners, also bled a lot. He became very depressed everytime he

fell. He thought it was his fault and that he did something wrong, like not

pay enough attention, that resulted in his fall. It is part of the disease to

become very depressed all the time. My dad cried everytime he became

emotional, whether happy or sad. We also had a difficult time with his crying,

since

he had always been very strong and stoic.

My mother helped him a great deal just by being there for him. They had

always been very much in love, but he became so attached to her that he sat next

to her holding her hand as much as he could. My mom complained that she could

not do anything at home. She gave up her painting and just kept him company.

She read the newspaper to him, since he could no longer maintain his

attention span long enough to read anything. They sat and watched television,

but he

could not follow the programs. He slept a lot, and that was when my mom was

able to do what she needed to do. Even taking a shower was worrisome for her,

in case he started moving around and fell. They had some live in help, but

the first person was a big problem. Later we had a Colombian lady who was

wonderful and very efficient, but my dad did not last long after they hired her.

I

was thinking about my parents this morning and realized that my mother made

my father as happy as he could be just by being with him and treating him with

the love and devotion that she did. That is all he could be given, and all

that he needed.

You have been battling this disease for a long time. You are doing a great

job and giving your husband excellent care. I hope you find the help you are

seeking. I wish I could be of more help. We are here to do what we can, you

have my support and my prayers. Un abrazo, Josie

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Dear Virginia:

Your husband's fall reminded me of my dad. He fell a lot and because he was

taking blood thinners, also bled a lot. He became very depressed everytime he

fell. He thought it was his fault and that he did something wrong, like not

pay enough attention, that resulted in his fall. It is part of the disease to

become very depressed all the time. My dad cried everytime he became

emotional, whether happy or sad. We also had a difficult time with his crying,

since

he had always been very strong and stoic.

My mother helped him a great deal just by being there for him. They had

always been very much in love, but he became so attached to her that he sat next

to her holding her hand as much as he could. My mom complained that she could

not do anything at home. She gave up her painting and just kept him company.

She read the newspaper to him, since he could no longer maintain his

attention span long enough to read anything. They sat and watched television,

but he

could not follow the programs. He slept a lot, and that was when my mom was

able to do what she needed to do. Even taking a shower was worrisome for her,

in case he started moving around and fell. They had some live in help, but

the first person was a big problem. Later we had a Colombian lady who was

wonderful and very efficient, but my dad did not last long after they hired her.

I

was thinking about my parents this morning and realized that my mother made

my father as happy as he could be just by being with him and treating him with

the love and devotion that she did. That is all he could be given, and all

that he needed.

You have been battling this disease for a long time. You are doing a great

job and giving your husband excellent care. I hope you find the help you are

seeking. I wish I could be of more help. We are here to do what we can, you

have my support and my prayers. Un abrazo, Josie

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Hi,

My husband takes Synemet -twice a day- since 7 years now. Yesterday morning I

found him on the floor, blood on the nose, hand... We've been at the hospital,

nothing is broken. After he slepts most of the day.

I didn't hear nothing, when I found him the blood was dry. He cannot sleep well

without Zypresa.

He's very depress, sometimes cries, is hard to see. I try to make him know that

I'm with him, sometimes I feel that he's gone and just touching his hand I try

to get him back.

I hope today he will be better.

Sincerely,

Virginia Maldonado.

-----

From: ppark4915@...

To: LBDcaregivers

Sent: Thursday, October 30, 2003 9:16 PM

Subject: Re: Thanks

Hi, Virginia,

My dad takes a medicine for his rigidity called Sinemet( generic form is

Carbidopa/Levodopa). It has worked very well for him. However, each patient

responds to medicines very differently. Some people in the group have had

good

experiences with it, and some have not. Hang in there!

Hugs,

Piper

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