Update

[Guest guest]

Hello everyone,

Just a update on myself. Afew days ago I lost my ability to speak. My new

Holistic doctor put me in the hospital. Got me a new neroligist and got my

uroligist. Started running tests mri's,x-rays,physical therapist,occupational

therapist,.Mri's still show nothing but they all ran tests on me for lyme

disease,food allergies,eviormental posioning, all were negtive. So did a

brain scan today and let me out under a 5 year watch for ms and put me on

xanax, and neuerontin. So I geuss were getting somewhere.So a I said this is

just a update.

love light and laughter

Raven

[Guest guest]

Raven,

Could you describe your difficulty with speaking? I have recently been

having difficuty with my voice and am wondering what could be causing it. I

went to the doctor last week and he ran some tests, but I haven't gotten the

results yet.

Gentle hugs,

[Guest guest]

Nichole,

Youv'e found one of the secrets of Happiness.

If you don't like them, ditch them.

This only works for Drs., nurses, therapists, etc. It will work on spouses

as well to a limited extent (Rumor has it that they keep showing up anyway.)

It would probably work on kids as well, seeing as they can't find their way

back home too well until their teenage years. But I'd feel guilty if I

tested that theory out. Most days. ;o)

More tactless advice brought to you by Lenny

[Guest guest]

Nichole,

Youv'e found one of the secrets of Happiness.

If you don't like them, ditch them.

This only works for Drs., nurses, therapists, etc. It will work on spouses

as well to a limited extent (Rumor has it that they keep showing up anyway.)

It would probably work on kids as well, seeing as they can't find their way

back home too well until their teenage years. But I'd feel guilty if I

tested that theory out. Most days. ;o)

More tactless advice brought to you by Lenny

[Guest guest]

Nichole,

Youv'e found one of the secrets of Happiness.

If you don't like them, ditch them.

This only works for Drs., nurses, therapists, etc. It will work on spouses

as well to a limited extent (Rumor has it that they keep showing up anyway.)

It would probably work on kids as well, seeing as they can't find their way

back home too well until their teenage years. But I'd feel guilty if I

tested that theory out. Most days. ;o)

More tactless advice brought to you by Lenny

[Guest guest]

In a message dated 2002-05-23 12:46:58 PM Eastern Daylight Time,

fritter@... writes:

> hanging on.

>

>

and that is about all any of us can do.

Ev

[Guest guest]

My husband does OK with his dentist appts as long as the

hygienist/dentist talks him through what they are doing. In other

words, tell him they are going to lower the chair, tell him they want to

look at his teeth, tell him they need to floss etc. Hanging on

too...~lula

[Guest guest]

My husband does OK with his dentist appts as long as the

hygienist/dentist talks him through what they are doing. In other

words, tell him they are going to lower the chair, tell him they want to

look at his teeth, tell him they need to floss etc. Hanging on

too...~lula

[Guest guest]

I'm in no way, shape or form trying to push religion. But I do believe in

the power of prayer. I, myself am a worrier. The latest sign on the church

I attend says, Don't worry pray. I try very hard to remember that. If I

can't find the words myself I will just say the Our Father. A lot of the

time it is a plea to God to just help me with whatever it is I'm trying to

deal with at the time. At the moment I'm a bit overwhelmed with several

irons I have in the fire, so it's been a struggle not to feel stressed out

and worried.

I try to place things in God's hand.

I'll keep you and your family in prayer.

Mariea

ASAP - Always Say A Prayer

[Guest guest]

Hi - I have now tried twice to write a note and keep losing

it on the screen - here goes one more time!

Glad you got your ticket home - and hope it was affordable. I have

spent a huge amount of money traveling back and forth for Mom

too - but at the same time I don't regret any of it. You will be able

to look back on this and know you did the right thing by going to

spend a few days with your dad and family.

Good that you can laugh about the hallucinations too! It sounds

like your mom is just incredibly overwhelmed still - so she isn't

able to do that, so it is good to hold back and be sensitive to that

while she is feeling so stressed by this.

I really hope that he rebounds some - and that the medications

start to help some more - I know it will be a stressful visit given

the family dynamics at the moment - but again I can't stress

enough how great it is that you are going. There are many

options for help out there - one place to contact is the local office

of the Division of Senior Services for resources - or to talk to your

dad's care coordinator (if he has one - doesn't sound like it

though). There are so many ways to get help - hiring a PCA to

come in, hiring an aide for respite care only (someone to sit and

just visit with him for a couple of hours, talk to him, etc.), or IF this

truly is the end stages of LBD you can arrange to have Hospice

come in and help too. Even in such a small town there are

certainly a few choices out there (I hope). Another option might

be adult daycare for a couple of hours a day. All of this would

benefit both your mom who would get a rest, and your dad who

would get input from others. She might be more open to it if you

approach it from the angle of being something that your father

would benefit from instead of something SHE needs. Or if you

don't have these things in that town you may be able to organize

a circle of friends through church or other community link to

come in and help out with regular tasks.

Okay - just all thoughts that I had - hang in there!!! Will be

thinking of you while you are on your visit,

> So here's the scoop:

> I am going home on October 24 and coming back October 29.

Flying into

> Rochester, it's the closest.

> I asked my Mom in a e-mail if Daddy understood when she told

him there was no

> fire in the hallway, or if he couldn't differentiate that it was a

> hallucination. She e-mails me back " HE DOESN'T

HALLUCINATE....THEY CAN GIVE

> HIM MEDS FOR THAT. "

> I want to ask her how the fire cleanup in the hallway is going. I

am not

> asking though, because it would upset her. I'm still in the dog

house with

> one sister for " upsetting Mom " . I worry though, because she is

the sole

> caretaker, all alone in a little bitty town, and she is still in such

denial.

> I also worry that he will take a big turn for the worse before I get

there. I

> also worry how it'll be with her while I'm there. I know this will

be the

> last time I ever see my Dad alive. That is something to deal

with in and of

> itself. The father/man he once was is long gone. Every once in

while you can

> catch a glimpse of him. That's really all I can hope for. I also

want to

> comfort the sick old man he's become.

[Guest guest]

Thank you for the update. I want you to know that what your mom, and

your sister are going through is not your fault. You did not " upset "

anyone...the disease has. You go see your dad with pride as you deserve

to be there. I know all the worries of progression with LBD can be

overwhelming to say the least. However, you can only take one day, or

even one moment at a time. Know that each day, and each breath is a

gift. I would suggest you hug your dad, and hug your mom as you will

only be held accountable for your actions. The rest is up to your

family and their actions. Stay strong for your dad...I rarely cried in

front of my dad because he knew by his " little girls " eyes just how bad

it really was. Now you have the ability to share your gift with me by

spending the time you deserve with your dad. :-))

Sandie

[Guest guest]

Mariea-

....... " I do believe in the power of prayer " , and when you said, " If I

can't find the words myself I say the Our Father " ...hopefully this

comforts you in knowing He already knows the prayer even before it is

prayed. Whatever the situation, when the words escape us, God already

knows our struggles.

Blessings to you as you sort out the irons in your life. Keeping you in

my prayers.

Sandie

Des Moines, IA

[Guest guest]

I can relate to your role in the family struggle. I have thought every time I

visited my mother that is was the last time. We have been on the last turn of

this roller coaster for two years now. My father refusing to accept the

progression of the illness by " saying I don't know why mother is saying these

things " when clearly the progression of illness predict these actions. May I

suggest you take a supportive roll and understand that the spouse has to come to

terms with the illness in their own time. Take a deep breath and do what you

can. You can't take on all the burden and worry. This

struggle can last awhile and you need to last with it. Your

roll will be accepted when they realize this for themselves.

Then you will need to step in and get things taken care of.

Our family has managed much better than I ever imagined but it has not been

easy. I knew we should have been in a nursing home a long time ago. You can

not rush this decision until the spouse is ready. My sister and I told my dad

that we would help in every possible way or find help and we would not think he

failed in any way when he was ready to take mom to a nursing home. It was not a

sign that he did not love and care for our mother. My sister and I wanted to

remove any bit of guilt that might keep him from this decision.

Don't get the cart ahead of the horse even though you see

the need. I hope I haven't quickly scanned too many of your

messages and misssed your need but I could relate to

your frustration. I wanted to " fix " things quickly when we

first learned the diagnosis. Just some thoughts - It may last longer than you

think. You

may have more time than you imagine. We are not in control of everything and

that is when you pray for patience

and understanding. Colleen in Missouri

UPDATE

So here's the scoop:

I am going home on October 24 and coming back October 29. Flying into

Rochester, it's the closest.

I asked my Mom in a e-mail if Daddy understood when she told him there was no

fire in the hallway, or if he couldn't differentiate that it was a

hallucination. She e-mails me back " HE DOESN'T HALLUCINATE....THEY CAN GIVE

HIM MEDS FOR THAT. "

I want to ask her how the fire cleanup in the hallway is going. I am not

asking though, because it would upset her. I'm still in the dog house with

one sister for " upsetting Mom " . I worry though, because she is the sole

caretaker, all alone in a little bitty town, and she is still in such denial.

I also worry that he will take a big turn for the worse before I get there. I

also worry how it'll be with her while I'm there. I know this will be the

last time I ever see my Dad alive. That is something to deal with in and of

itself. The father/man he once was is long gone. Every once in while you can

catch a glimpse of him. That's really all I can hope for. I also want to

comfort the sick old man he's become.

[Guest guest]

Kassandra, so great to hear from you, and such wonderful news! I'm just

jumping up and down for you! Don't know where you start. Let's see -- glad you

are getting out of the military or able to go home. Thrilled to hear about your

new love and of what a healthy relationship it is! I'm so very happy for you,

as you have suffered, and deserve better! Thanks so much for sharing with us &

keep us in touch! Best Wishes, PJ

Kassandra Viscovich wrote:Hello everyone,

I'm back...sort of. My life has radically changed since I last said

anything, but it's changing for the better!

First I've only got 10 days left until the military says I can

leave. :-)

Second, I've decided to divorce my husband of 8 years. Those of you

in an unhappy relationship, or any relationship do a google.com

search for " Power and Control Wheel. " I knew I was in an abusive

relationship but I didn't realize how abusive until I saw it broken

down and came up with examples from EVERY section.

Third, a year ago a psychic told me that I should not be with my

husband but with a military man who loved horses. Six years ago, my

boss, a military man who trains and races horses, and I got

together...had a not-so-trival fling then sort of drifted apart. A

few months ago I got in touch with him and we're kicking ourselves

for not getting together sooner! We've fallen head over heels in love

with each other, again, and I've got a safe place to go to when I

leave my soon-to-be ex. This is a true unconditional love

relationship. I've been saying the affirmations about how

unconditional love comes to me and it has! Affirmations may take time

to manifest but they do manifest.

With all of that I'm still saying my affirmations because I'm seeing

them come true. And with all the stress that I'm under with moving,

my car breaking down, my ex, work, and all of that... it's a

wonderful comfort knowing that the affirmations are working. So keep

saying them, and they'll begin to show up in your life.

Brightest blessings,

~ Kassandra

[Guest guest]

Kassandra, so great to hear from you, and such wonderful news! I'm just

jumping up and down for you! Don't know where you start. Let's see -- glad you

are getting out of the military or able to go home. Thrilled to hear about your

new love and of what a healthy relationship it is! I'm so very happy for you,

as you have suffered, and deserve better! Thanks so much for sharing with us &

keep us in touch! Best Wishes, PJ

Kassandra Viscovich wrote:Hello everyone,

I'm back...sort of. My life has radically changed since I last said

anything, but it's changing for the better!

First I've only got 10 days left until the military says I can

leave. :-)

Second, I've decided to divorce my husband of 8 years. Those of you

in an unhappy relationship, or any relationship do a google.com

search for " Power and Control Wheel. " I knew I was in an abusive

relationship but I didn't realize how abusive until I saw it broken

down and came up with examples from EVERY section.

Third, a year ago a psychic told me that I should not be with my

husband but with a military man who loved horses. Six years ago, my

boss, a military man who trains and races horses, and I got

together...had a not-so-trival fling then sort of drifted apart. A

few months ago I got in touch with him and we're kicking ourselves

for not getting together sooner! We've fallen head over heels in love

with each other, again, and I've got a safe place to go to when I

leave my soon-to-be ex. This is a true unconditional love

relationship. I've been saying the affirmations about how

unconditional love comes to me and it has! Affirmations may take time

to manifest but they do manifest.

With all of that I'm still saying my affirmations because I'm seeing

them come true. And with all the stress that I'm under with moving,

my car breaking down, my ex, work, and all of that... it's a

wonderful comfort knowing that the affirmations are working. So keep

saying them, and they'll begin to show up in your life.

Brightest blessings,

~ Kassandra

[Guest guest]

Kassandra, so great to hear from you, and such wonderful news! I'm just

jumping up and down for you! Don't know where you start. Let's see -- glad you

are getting out of the military or able to go home. Thrilled to hear about your

new love and of what a healthy relationship it is! I'm so very happy for you,

as you have suffered, and deserve better! Thanks so much for sharing with us &

keep us in touch! Best Wishes, PJ

Kassandra Viscovich wrote:Hello everyone,

I'm back...sort of. My life has radically changed since I last said

anything, but it's changing for the better!

First I've only got 10 days left until the military says I can

leave. :-)

Second, I've decided to divorce my husband of 8 years. Those of you

in an unhappy relationship, or any relationship do a google.com

search for " Power and Control Wheel. " I knew I was in an abusive

relationship but I didn't realize how abusive until I saw it broken

down and came up with examples from EVERY section.

Third, a year ago a psychic told me that I should not be with my

husband but with a military man who loved horses. Six years ago, my

boss, a military man who trains and races horses, and I got

together...had a not-so-trival fling then sort of drifted apart. A

few months ago I got in touch with him and we're kicking ourselves

for not getting together sooner! We've fallen head over heels in love

with each other, again, and I've got a safe place to go to when I

leave my soon-to-be ex. This is a true unconditional love

relationship. I've been saying the affirmations about how

unconditional love comes to me and it has! Affirmations may take time

to manifest but they do manifest.

With all of that I'm still saying my affirmations because I'm seeing

them come true. And with all the stress that I'm under with moving,

my car breaking down, my ex, work, and all of that... it's a

wonderful comfort knowing that the affirmations are working. So keep

saying them, and they'll begin to show up in your life.

Brightest blessings,

~ Kassandra

[Guest guest]

Where do you think Delta will send you? N.O. still has Delta and I'd welcome a

DSer to the area. Betsy

update

Well, a few weeks ago Delta Airlines made an announcement saying they

are pulling out of DFW. Thats us! We haven't found out if hubby will

get transferred or layed off. But we already got an offer on our

house. I think I should go into real estate - this is the 5th For

Sale By Owner house I have sold in less than 10 years! Maybe I have

found something I am good at!??!? Anyway, I have mixed feelings of

excitement and utter dread! I have found that stress causes weight

loss - pre DS this situation would have packed on 15 pounds easy -

now I find myself 9 pounds from what I have deemed a too low weight

for me. I am not worried - 9 pounds is a lot of weight. I am amazed

though that this surgery has caused the reverse - I am always saying

this is backward surgery - and it is! I told my husband we need a

stress free life or I will get too thin! LOL!!!!!! Keep us in your

prayers.

hugs, cindy lee in fort worth texas - for now!

[Guest guest]

Where do you think Delta will send you? N.O. still has Delta and I'd welcome a

DSer to the area. Betsy

update

Well, a few weeks ago Delta Airlines made an announcement saying they

are pulling out of DFW. Thats us! We haven't found out if hubby will

get transferred or layed off. But we already got an offer on our

house. I think I should go into real estate - this is the 5th For

Sale By Owner house I have sold in less than 10 years! Maybe I have

found something I am good at!??!? Anyway, I have mixed feelings of

excitement and utter dread! I have found that stress causes weight

loss - pre DS this situation would have packed on 15 pounds easy -

now I find myself 9 pounds from what I have deemed a too low weight

for me. I am not worried - 9 pounds is a lot of weight. I am amazed

though that this surgery has caused the reverse - I am always saying

this is backward surgery - and it is! I told my husband we need a

stress free life or I will get too thin! LOL!!!!!! Keep us in your

prayers.

hugs, cindy lee in fort worth texas - for now!

[Guest guest]

Keep us in your

> prayers.

>

> hugs, cindy lee in fort worth texas - for now!

===========================

Ok, I'm praying for a California Transfer! lol...ok, I'm really

praying that this door will take you to where your family can live a

happy, healthy life.

Hugs

Jo

[Guest guest]

Keep us in your

> prayers.

>

> hugs, cindy lee in fort worth texas - for now!

===========================

Ok, I'm praying for a California Transfer! lol...ok, I'm really

praying that this door will take you to where your family can live a

happy, healthy life.

Hugs

Jo

[Guest guest]

This is great news Rob! I can't wait for that day. Enjoy!

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

Post your free ad now! Yahoo! Canada Personals

[Guest guest]

> This is great news Rob! I can't wait for that day. Enjoy!

>

Thanks , I hope it comes soon for you!

Rob

[Guest guest]

Awesome news Rob,congradulations im so happy for ya.My rhumy seems to think

my Stills has burned itself out to although that golden word remission was

not used ,take care. d.Canada

Update

>

>

> Hello everyone, a few weeks ago I was told by my RD that I was in

> remission, but he wanted a blood test, to see where things were. I

> asked about what should be tested, and was told by other Stilligans

> that I should have CBC, CRP, Serum Ferritin, and my Liver Enzymes

> checked, so that's what I told my RD. He gave me the results last

> Friday, and everything was NORMAL!!!

>

> I have been coaching my church's mens basketball team until this

> past Monday, when I turned the coaching over to someone else, and

> laced up the old Nike's and played! I limitted my playing time to

> just 2 minutes, but I played, and on Tuesday morning I didn't feel

> any worse then I normally would feel after playing the night

> before! I'm going to keep playing as long as my body allows me, but

> I am going to limit my playing time, after all I am 42 years old,

> playing in a league with guys half my age! God has given me a break

> from Stills, and I'm going to take advantage of it!

>

> Saturday I'm going mountain biking at a new indoor riding area here

> in Cleveland, since it's too cold to ride outside, at least for me!

>

> I do notice that after sitting at my desk for long periods of time,

> I am stiff when trying to stand up, but if that's the only issues I

> have at this point, I can live with that!

>

> Thanks for all the help that this group has provided!

>

> Rob

>

>

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not intended

> to replace the services of a trained health professional or to be a

> substitute for medical advice of physicians and/or other health care

> professionals. The International Still's Disease Foundation is not engaged

> in rendering medical or professional medical services. You should consult

> your physician on specific medical questions, particularly in matters

> requiring diagnosis or medical attention. The International Still's

> Disease Foundation makes no representations or warranties with respect to

> any treatment, action, application, medication or preparation by any

> person following the information offered or provided within this support

> form.

>

> ion by any person following the information offered or provided within

> this support form.

>

>

>

[Guest guest]

That is truly wonderful , !!!

Love Sharon

xxoo

>

> Hello everyone, a few weeks ago I was told by my RD that I was in

> remission, but he wanted a blood test, to see where things were.  I

> asked about what should be tested, and was told by other Stilligans

> that I should have CBC, CRP, Serum Ferritin, and my Liver Enzymes

> checked, so that's what I told my RD.  He gave me the results last

> Friday, and everything was NORMAL!!!

>

> I have been coaching my church's mens basketball team until this

> past Monday, when I turned the coaching over to someone else, and

> laced up the old Nike's and played!  I limitted my playing time to

> just 2 minutes, but I played, and on Tuesday morning I didn't feel

> any worse then I normally would feel after playing the night

> before!  I'm going to keep playing as long as my body allows me, but

> I am going to limit my playing time, after all I am 42 years old,

> playing in a league with guys half my age! God has given me a break

> from Stills, and I'm going to take advantage of it!

>

> Saturday I'm going mountain biking at a new indoor riding area here

> in Cleveland, since it's too cold to ride outside, at least for me!

>

> I do notice that after sitting at my desk for long periods of time,

> I am stiff when trying to stand up, but if that's the only issues I

> have at this point, I can live with that!

>

> Thanks for all the help that this group has provided!

>

> Rob

>

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

> The materials and information contained in this message are not

> intended to replace the services of a trained health professional or

> to be a substitute for medical advice of physicians and/or other

> health care professionals. The International Still's Disease

> Foundation is not engaged in rendering medical or professional medical

> services. You should consult your physician on specific medical

> questions, particularly in matters requiring diagnosis or medical

> attention. The International Still's Disease Foundation makes no

> representations or warranties with respect to any treatment, action,

> application, medication or preparation by any person following the

> information offered or provided within this support form. 

>

> ion by any person following the information offered or provided

> within this support form. 

>

>

>

>

>

>

[Guest guest]

Congrats on your ring and anniversary Marilyn, that is awesome!! So hoping

you can have your surgery too!! If they won't put you out, I can say I had

all my wisdom teeth out with novicaine and it was not bad at all. I was 18

at the time, but did not feel anything until after the stuff wore off.

Lynn

-- Update

Hello everyone,

I have been battling bronchitis since the beginning of January and since

then have been on antibiotics, one right after the other (Levoquin for 10

days, Avelox (new) 7 days and then another batch of Avelox for 7 days). I

finally think that I'm beginning to kick it and hope so as I have surgery

coming up on the 16th of Feb. (next week). I'm having my four wisdom teeth

removed plus a molar and the nurses at the hospital have set up a bed in the

ICU for me. I'm being put under (thank god as I don't think I could do it

half awake). They are being careful with me because of my medical

conditions and there are many but now I have been made aware that I must see

internal medicine doctors tomorrow for them to check me out to make sure I'm

okay to go ahead with the surgery. If not and they think I could be too

much of a risk, they could cancel my surgery which means I would be in jam

as to how I would get them out. I'm praying that they give their approval

for my surgery to go ahead but I must say that out of all of my surgeries

not once have I had this happen to me although I have never had surgery in

this hospital and perhaps it normal practice for them. I'm just keeping my

fingers crossed that all goes well as I'm sick and tired of these teeth

causing problems and I just want them out. I have a phobia of dentists and

dental work.....

On a lighter note, my husband and I celebrated our ten year anniversary on

the 19th of Jan. and I was so lucky to receive a beautiful three diamond

ring (past/present/future)....

I'm done with the rambling, take care and thanks for reading.

Marilyn