Re:

October 22, 2001

Hi ,

My birthday is Oct.18.

I listen to the news reports and then do searches through world news on the

net. I have found that a lot of news is inaccurate or not reported fully. I

do searches to find the truth.

It's like:

The anthrax hoaxes we were getting in Australia, the news here made out that

it was copy cats doing the hoaxes. When I did my search I found that the

hoaxes were World Wide.

A lot of Australians believe that it could never happen here. Sure we are

one of the safer countries but it can still happen here.

I think that because I have lost a lot of my independence since my last

surgery I'm feeling very insecure and unsafe at the moment.

Cherie

> Hi Cheri,

>

> My birthday was Oct. 3, not only am I a Libra in need of balance, my

> moon is in virgo - so I want logical balance <G>.

> (someone please tell me where to find THAT!)

>

> I, for one, have stopped watching all news except one local show per day

> - and read the paper where I can skim articles as I please. I think the

> news media brow beats us with more info than we can handle.

>

> --

> Life shrinks or expands

> In proportion to one's courage.

> Anais Nin

October 24, 2001

Hi Cherie, I think that you've touched on an interesting issue about safety, vulnerability and independence (or loss of some independence). After my surgery I started to feel more vulnerable too. I felt like I couldn't run away from, or defend myself the way I used to in, some threatening situations. And after I started using my wheelchair every time I left the house the feeling of vulnerability grew larger, stronger. So when something like the threat of war comes up I too feel very vulnerable. I start thinking "What if we're really attacked near here and lose electricity, have leave the area and can't drive out, how far can I get in my motorized wheelchair? How far will I get using crutches, etc? It is very frightening, so I try to push it out of my mind but then someone turns on the TV and we are bombarded with the media frenzy again. I once thought about getting a gun so I would feel safe but with my luck it would probably be used on me instead. I've asked my son, the martial arts instructor, to show me some self defense and he keeps telling me that if I'm in my wheelchair that I should use the chair as a weapon and run into the person that is trying to hurt me (run over him/her). The darn thing is quite heavy and practically impossible to stop if I keep pushing the joy stick, so I probably could do some damage that way. Anyway, I just wanted to let you know that you're not alone with the feeling of vulnerability. Sue Mc (the kids have talked about building a bomb shelter in the back yard!! brings me back to the 50'/60's!!!) Re: Hi ,My birthday is Oct.18.I listen to the news reports and then do searches through world news on thenet. I have found that a lot of news is inaccurate or not reported fully. Ido searches to find the truth.It's like:The anthrax hoaxes we were getting in Australia, the news here made out thatit was copy cats doing the hoaxes. When I did my search I found that thehoaxes were World Wide.A lot of Australians believe that it could never happen here. Sure we areone of the safer countries but it can still happen here.I think that because I have lost a lot of my independence since my lastsurgery I'm feeling very insecure and unsafe at the moment.CherieGet more from the Web. FREE MSN Explorer download : http://explorer.msn.com

October 24, 2001

Paranoia Will Destroy Ya! People are over analyzing themselves into nervous

wrecks...knock it off!!!! There are more positive things to obsess about. I

dont want to do this but here goes anyway, " We have nothing to fear except

fear itself! " .

>

>Reply-To: tetheredspinalcord

>To: " tetheredspinalcord " <tetheredspinalcord >

>Subject: Re:

>Date: Wed, 24 Oct 2001 11:29:56 -0400

>

>Hi Cherie,

>I think that you've touched on an interesting issue about safety,

>vulnerability and independence (or loss of some independence). After my

>surgery I started to feel more vulnerable too. I felt like I couldn't run

>away from, or defend myself the way I used to in, some threatening

>situations. And after I started using my wheelchair every time I left the

>house the feeling of vulnerability grew larger, stronger. So when

>something like the threat of war comes up I too feel very vulnerable. I

>start thinking " What if we're really attacked near here and lose

>electricity, have leave the area and can't drive out, how far can I get in

>my motorized wheelchair? How far will I get using crutches, etc? It is

>very frightening, so I try to push it out of my mind but then someone turns

>on the TV and we are bombarded with the media frenzy again.

>I once thought about getting a gun so I would feel safe but with my luck it

>would probably be used on me instead. I've asked my son, the martial arts

>instructor, to show me some self defense and he keeps telling me that if

>I'm in my wheelchair that I should use the chair as a weapon and run into

>the person that is trying to hurt me (run over him/her). The darn thing is

>quite heavy and practically impossible to stop if I keep pushing the joy

>stick, so I probably could do some damage that way. Anyway, I just wanted

>to let you know that you're not alone with the feeling of vulnerability.

>Sue Mc

>(the kids have talked about building a bomb shelter in the back yard!!

>brings me back to the 50'/60's!!!)

>

> Re:

>

>Hi ,

>My birthday is Oct.18.

>I listen to the news reports and then do searches through world news on the

>net. I have found that a lot of news is inaccurate or not reported fully. I

>do searches to find the truth.

>

>It's like:

>The anthrax hoaxes we were getting in Australia, the news here made out

>that

>it was copy cats doing the hoaxes. When I did my search I found that the

>hoaxes were World Wide.

>

>A lot of Australians believe that it could never happen here. Sure we are

>one of the safer countries but it can still happen here.

>I think that because I have lost a lot of my independence since my last

>surgery I'm feeling very insecure and unsafe at the moment.

>CherieGet more from the Web. FREE MSN Explorer download :

>http://explorer.msn.com

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

March 21, 2002

To 's mom, I just want to let you know that your daughter is absolutely precious! I can see why you want to protect her so badly. I don't know her, and just by looking at her innocent face, I want to protect her! Beautiful child. You're very lucky!

Thank you, i should have said more about her. she dose not ahve tcs. I am the one with tcs. I just wanted to show her pic.

April 27, 2002

Congrats -and best wishes to your husband's recovery. I had by-pass

surgery 12 years ago and my sugar was out of wack for weeks! Eventually they

went back to normal-if there is such as thing as " normal " for diabetics!

Diabetic neuropathy?

>

>A friend of mine has diabetic neuropathy. She wants to know what to do

>about it as well as the symptoms and such.

>Can you all pitch in and let me know something, and I will forward the

>messages to her.

>Thanks,

>Harry Dawg

>

May 31, 2002

Was there supposed to be a message here? LaWandaAt 08:58 PM 5/30/02 -0700,

you wrote:

>Danny

>

July 18, 2002

That agrees basically with what I have been told, insulin doesn't have to

be refrigerated unless the temperature goes above 85 degrees where the

insulin is. Whenever I travel, I usually just put my insulin in a cosmetic

bag, along with my syringes and my Count-a-dose and it is fine. When I am

staying with a friend, I will put it in the refrigerator and when I am at

home I also do that, but otherwise it stays just fine at room

temperature. LaWanda

July 18, 2002

Hi Hank,

I have been a diabetic for 22 years now. Since

I was 10 years old, back in 1980. Now, what I'm

about to say is only my thoughts, not medical

advice. But just take it for whatever it's

worth.

In the 80's and even early 90's we had to keep

insulin constantly refrigerated. Sometime back

in the mid or late 90's, I don't remember when

exactly, but I'm thinking late 90's... I had

a few different doctors over a period of a few

years. Two of these doctors told me when I

asked specifically about it, they told me that

the newer insulins don't have as much of a

dire need to be constantly refrigerated. They

both said I could keep my insulin, which for

the record, is Humulin brand, both R & N, and

Humalog now, well, they said I could keep it

at room temperature, as long as it didn't get

much above the high-80's or so. Otherwise,

I should keep it refrigerated.

Now, what I keep my insulin in is an old leather

shaving kit bag that used to be my dad's. It's

a sentimental type thing, I guess, now that I

think about it. But this little 6-inch by 8-inch

bag that zips up, works great. I keep my two

insulin bottles, usually about 10 syringes in

there, and my count-a-dose thingie. I rarely

keep it in the fridge, and have not yet had any

problems. But now that I've said that and

thought about it, with the 90-degree days we've

been having around here lately, I will start

refrigerating it again for the summer. Oy.

Anyway, my whole point is, in many cases, room

temperature is probably fine, and just find a

kit or bag that suits your needs. It does not

always need to be an expensive case made for

that exact purpose. Ask your doctor about your

specific type of insulin and about it's needs

for refrigeration.

Good luck finding a bag, and I hope this has

helped somehow.

Regards,

Everett

-----

Everett Gavel

In Northeast Ohio, USA

mailto:EverettG@...

" Begin With the Goal, End With the Gold! "

At 08:37 PM 7/17/2002, you wrote:

>Well, here goes my first tough question.

>

>In my job it is necessary for me to travel, making it a must to carry along

>syringes of insulin.

>

>I have contacted Maxiaids and all they have is a Styrofoam box that holds

>one bottle of insulin and one syringe. I have seen a leather case that

>sill hold two bottles of insulin, and several syringes and an ice pack to

>keep them cold. I asked the person who had this where they got it from,

>and they said they got it for Christmas.

>

>Can anyone tell me where I can get something besides a foam box? Thanks

>for all of your help in advance.

>

July 18, 2002

I do the same with my insulin. I keep it in the case that my glucometer is

in and it does very well. I don't refrigerate it at home very often either.

I do if it hasn't been open, but then I don't unless for some reason I won't

have the air conditioner on. I have not had any trouble with it at all.

Re:

> That agrees basically with what I have been told, insulin doesn't have to

> be refrigerated unless the temperature goes above 85 degrees where the

> insulin is. Whenever I travel, I usually just put my insulin in a

cosmetic

> bag, along with my syringes and my Count-a-dose and it is fine. When I am

> staying with a friend, I will put it in the refrigerator and when I am at

> home I also do that, but otherwise it stays just fine at room

> temperature. LaWanda

>

July 18, 2002

Hank, You do not need to refrigerate insulin. I carry mine around in a

little cloth bag with my syringes and count-a-dose and have never had a

problem. I hsould say, I used to carry it around until I got a pump. The

pump insulin is not refrigerated. obviously, but is wrn on a belt around

your waist and I have not hadhad a problem

Well, here goes my first tough question.

In my job it is necessary for me to travel, making it a must to carry along

syringes of insulin.

I have contacted Maxiaids and all they have is a Styrofoam box that holds

one bottle of insulin and one syringe. I have seen a leather case that

sill hold two bottles of insulin, and several syringes and an ice pack to

keep them cold. I asked the person who had this where they got it from,

and they said they got it for Christmas.

Can anyone tell me where I can get something besides a foam box? Thanks

for all of your help in advance.

June 12, 2003

" While the paraplegic CEO was undoubtedly a bright man with talent, chances

are that he was ushered into the job, especially if he was working during

the 1980s and early 1990s when large companies were heavily competing with

each other to hire visibly disabled people for upper-management positions "

i find that so, so offensive. even if he got the job because the company was

proactive in its employment policies, he would not have kept it because the

reality is, if you have a disability, you have to work harder and do better than

everyone else to hold your position over time.

and as for wanting this. i would not want a job i have not earned and could not

do effectively. its a matter of pride. its also a matter of credibility for

autism.

__________________________________________________________________

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December 11, 2005

Thank you for your support , it really means a

lot. I don't know what I would do if I did not have

this group to vent to. No family members seem to hear

my cry for help. They all have their two cents to add,

but no physical help or just being here to support me.

Thank goodness for people like you here. Hugs, Jan

--- sandra_dil wrote:

> Jan

> I am glad you are letting out some frustration with

> us. You are only

> human. Stevie gave great advice. The step kids

> might otherwise use

> this against you when you seek payment for care

> after out of the

> estate. I hope I am not wrong in remembering that

> was an idea for

> you to follow. Don't be hard on yourself, you are

> amazing. You have

> kept Jim much longer than his kids would have if you

> were not there.

> Please remember that you are important too.

>

> Hugs,

>

> >

> > Hello Jan,

> >

> > Actually, you need to " put it on record "

> immediately! Always

> report what

> > happens and be open about it. Otherwise....you

> leave yourself wide

> open for

> > criticism, accusations, and more trouble that

> you'll ever want from

> the

> > Step-people. Been there, done that. I keep a

> journal and point

> out to the doctor every

> > fall/bruise/injury or confrontation. Silence is

> NEVER golden when

> there are

> > bruises.

> >

> > Best of luck to you......Peace, Stevie

> >

> > * * * * * * * * * *

> > Oh Arlene, what are we ever to do?! It's a losing

> > battle. Thanks for the idea about the sleeves. I

> am

> > concerned about the Day Program questioning the

> > bruises, because the staff nurse pushes his

> sleeves up

> > to record his blood pressure every Monday. I need

> the

> > break away from him and I just hope it doesn't go

> on

> > record about the bruises.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

__________________________________________________

December 13, 2005

, thank you so much for your support. Hugs, Jan

--- sandra_dil wrote:

> Jan

> I am glad you are letting out some frustration with

> us. You are only

> human. Stevie gave great advice. The step kids

> might otherwise use

> this against you when you seek payment for care

> after out of the

> estate. I hope I am not wrong in remembering that

> was an idea for

> you to follow. Don't be hard on yourself, you are

> amazing. You have

> kept Jim much longer than his kids would have if you

> were not there.

> Please remember that you are important too.

>

> Hugs,

>

> >

> > Hello Jan,

> >

> > Actually, you need to " put it on record "

> immediately! Always

> report what

> > happens and be open about it. Otherwise....you

> leave yourself wide

> open for

> > criticism, accusations, and more trouble that

> you'll ever want from

> the

> > Step-people. Been there, done that. I keep a

> journal and point

> out to the doctor every

> > fall/bruise/injury or confrontation. Silence is

> NEVER golden when

> there are

> > bruises.

> >

> > Best of luck to you......Peace, Stevie

> >

> > * * * * * * * * * *

> > Oh Arlene, what are we ever to do?! It's a losing

> > battle. Thanks for the idea about the sleeves. I

> am

> > concerned about the Day Program questioning the

> > bruises, because the staff nurse pushes his

> sleeves up

> > to record his blood pressure every Monday. I need

> the

> > break away from him and I just hope it doesn't go

> on

> > record about the bruises.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

__________________________________________________

December 13, 2005

, thank you so much for your support. Hugs, Jan

--- sandra_dil wrote:

> Jan

> I am glad you are letting out some frustration with

> us. You are only

> human. Stevie gave great advice. The step kids

> might otherwise use

> this against you when you seek payment for care

> after out of the

> estate. I hope I am not wrong in remembering that

> was an idea for

> you to follow. Don't be hard on yourself, you are

> amazing. You have

> kept Jim much longer than his kids would have if you

> were not there.

> Please remember that you are important too.

>

> Hugs,

>

> >

> > Hello Jan,

> >

> > Actually, you need to " put it on record "

> immediately! Always

> report what

> > happens and be open about it. Otherwise....you

> leave yourself wide

> open for

> > criticism, accusations, and more trouble that

> you'll ever want from

> the

> > Step-people. Been there, done that. I keep a

> journal and point

> out to the doctor every

> > fall/bruise/injury or confrontation. Silence is

> NEVER golden when

> there are

> > bruises.

> >

> > Best of luck to you......Peace, Stevie

> >

> > * * * * * * * * * *

> > Oh Arlene, what are we ever to do?! It's a losing

> > battle. Thanks for the idea about the sleeves. I

> am

> > concerned about the Day Program questioning the

> > bruises, because the staff nurse pushes his

> sleeves up

> > to record his blood pressure every Monday. I need

> the

> > break away from him and I just hope it doesn't go

> on

> > record about the bruises.

> >

> > [Non-text portions of this message have been

> removed]

> >

>

__________________________________________________

December 13, 2005

Hi , I love your thought and appreciate your

wanting to go to battle for me. I just have one hang

up about getting on the local news for picketing my

husband's kid's houses. I can only imagine the amount

of calls I would get on those days. I am curious as to

what you had thought up to write on the picket signs.

hee, hee! Sandie could drive by this way and get some

more hood ornaments too. Keep on Dreaming , maybe

telepathy will reach them to see the errors of their

ways. HUGE HUGS! Jan

--- Skrabek wrote:

> Jan:

>

> I cried when I read your post from yesterday. I

> could feel the frustration in your words. I really

> want to come to California, find Jim's kids and

> shake them for you. In fact I dreamed last night

> that I did just that. Maybe if we got a whole lot

> of us together and some old fashioned picket signs.

> Would you supply their addresses and let us picket

> each of their houses?? Maybe that would embarrass

> them into doing the right thing. I've already

> started writing a few of the signs in my head!!

>

> Enjoy your hours off today. Sending you lots of

> virtual hugs form Canada

> !(((((((((((((Jan)))))))))))))

>

> Janet Colello wrote:

>

> Hi Kath,

> I am so glad to read about your Christmas doldrums.

> I

> can't seem to get with it either. I thought it was

> only me. I just don't seem to have the energy and it

> makes me feel so badly about it, because I wanted to

> make this the best Christmas ever with Jim, since I

> believe it will be our last one together at home. I

> just can't seem to drag myself upstairs to get all

> the

> decorations and bring them downstairs. I barely have

> the energy to climb the stairs. Every year I have

> decorated and gone out in search of the perfect

> tree.

> I looked forward to going to the tree lot every

> Christmas and finding that special 7 ft. tree to

> bring

> home and decorate.

> Last night was awful with Jim. Or I should say very

> early this morning at 2AM he woke me up, which is

> good. He usually is night time incontinent. Jim is

> getting more and more aggressive, stubborn and

> argumentive. He had to go to the bathroom and I got

> him in there, but then he stepped away from the

> toilet

> and pulled down his pants to pee on the floor. Of

> course his pants were still around his knees and I

> could visualize the mess of the wet clothes and pee

> on

> the floor to clean up and at that hour I was not

> much

> in the mood to start steralizing the floor and clean

> up the mess, so I fought to get him over to the

> toilet

> and he was hitting me and punching at me. I of

> course

> have more strength than him now, so I grabbed him by

> the arms and held them while shoving him back toward

> the toilet and trying to hold him steady, so he

> wouldn't fall. We were in an actual battle. I HATE

> WHAT THIS DISEASE DOES TO US ALL! He was resisting

> to

> sit and I went ballistic screaming at him. I thought

> I

> was going to have a heart attack, I was so spitting

> angry at him. I finally got him on the toilet and he

> did his thing. Today, I noticed bruise marks on his

> arms where I held them tightly down, so he wouldn't

> hit at me. I feel so awful today I want to cry. I

> can't wait for this all to end. I feel trapped here,

> because of the situation with Jim's kids and no

> support to help me. I can't afford to put him in a

> facility without his kids taking money out of the

> Trust, which there is a provision in the Trust that

> they could do that to serve Jim's best interest in

> his

> care, but they refues to do it and come up with

> every

> excuse in the book not to take out of the Trust to

> take care of Jim. I applied for MediCal/Medicaid

> last

> week and I am waiting for it to process through, but

> it can't be fast enough. I can't handle this

> anymore!

> I don't have the stamina to keep it up on my own. I

> feel so sick today over what happened. Tomorrow is

> Jim's day at the Day Program. I look forward to time

> for myself, but now I wonder if they question the

> burises on his arms if it will go on record and I am

> afraid of that. I need help and I can't seem to get

> it. Every caregiver costs so much and we don't seem

> to

> qualify for any in home care without paying. I feel

> like I am in LIMBO. My muscles ache all over today

> from using them to hold Jim back. I just can't seem

> to

> get into the Christmas Spirit. I felt like the

> Grinch

> last night. I haven't even started shopping yet. I

> have to line up caregivers, so that I can get out

> and

> that costs so much that it takes away from the money

> I

> could use on gifts. It started out beautifully early

> last night. I took Jim for a ride around to see the

> homes all decorated and we drove downtown to see the

> shoppers and the hustle and bustle of Christmas in

> the

> air, but really Jim just wanted to get home and not

> be

> bothered with it. I got a little feel of Christmas,

> but it faded out fast.

> Take care Kath, you are really a trooper to be

> taking

> care of your mom and helping out with your MIL too.

> Wish I could drink a gallon of Lemon Drops right

> now.

> HUGE HUGS to you, Jan

>

> --- STEVE & KATHY WARD wrote:

>

> > Thank you Sandie

> >

> > I needed reminding that " I am only responsible

> for

> > the effort... "

> > As for the MIL, she is doing okay as reported by

> > my husband. He has been taking the pills to her

> for

> > the past two days and says she seems very good,

> 100%

> > better. Maybe the medication is kicking in...or

> > maybe...its SHOWTIME...time will tell. I hope

> > things are getting better. The doctor told her

> that

> > there was no reason she couldn't take her own

> pills.

> > My husband was not amused. He has not contacted

> > the doctor since the big fight he had with his

> > mother on Thursday evening after the doctor

> > appointment for fear he might kill him...never the

> > less, we are still dropping off pills daily at

> least

> > until tuesday...When one week is up.

> >

> > I still think she needs assessment as to her

> > memory or lack of, but I have pushed enough for

> now,

> > after all I still have my mom to worry about and

> > Christmas is coming and I haven't done a thing

> yet.

> > I was shopping today and found myself wandering

> > aimlessly, hating the whole holiday season and

> > wishing for the first time in my life that it was

> > over. I don't know if I am just depressed about

> it,

> > but it just ain't like it used to be...my kids are

> > grown, I am sad to have my mother but not have my

> > mother. I couldn't care less about recieving

> > anything at all, and only want to get some

> presents

> > for the kids so that it isn't a weird year for

> them.

> > We didn't have our open house party this

> year...not

> > enough energy and so it is different in that our

> > house isn't decorated yet. We are arguing over

> > whether to get a real tree or a fake one. I have

> > put up a big fight about having a real one, but to

> > tell you the truth, the rest of it seems so fake,

> I

> > don't know why I am worrying about it at

> > all ( except the fear that my feelings of despair

> > will continue on, year after year, once we get the

> > fake tree, as there is no going back to real, once

> > you buy the fake one.

> >

> > Sorry I didn't mean to be so down about it all,

> > but after a day at the mall where I spent 4 hours

> > and came home empty handed (I picked out 4

> different

> > things but put them all down when the line ups

> were

> > too long and I wasn't that sure anyway) I guess I

> am

> > pretty tired.

> >

> > I hope my outlook will change but for now I am

> > just trodding along and remembering how my

> nightmare

> > began the day after new years last year...

> >

> > Thanks for caring, Sandie.

> >

> > Kath

>

=== message truncated ===

__________________________________________________

December 14, 2005

Not a bad idea . I will have to borrow a

camcorder, since I don't have one, but my daughter has

one, so I will giver her a call. It would help a lot

if other people really could see what goes on with

him. Thanks for the suggestion and thank you so much

for your concern and support. Jan

--- wrote:

> Jan,

>

> I know that I don't post on here much, but I have

> learned so much from the care that you have given to

> Jim. My great aunt is the person in my family that

> has been diagnosed with LBD. She is still in the

> very early stages and actually is still doing very

> well. It is scary to think of all the things to

> come. This list and everyone on it has really

> helped to prepare me for what to expect and ways to

> try and handle things when they do come up. I took

> care of my grandmother for over 3 years before she

> passed away in 95 and the more I learn about LBD the

> more I'm convinced that it is what she had.

>

> However, your situation just breaks my heart!!! You

> have given so much love and care and now seem to be

> caught with no where to turn. I know that we all

> wish that there was something that we could do to

> help out. One thought that I had (not sure if it is

> a good one or not, so I'll let you decide!) about

> the showtime and how Jim acts alone with you was to

> maybe setup a video recorder somewhere. This would

> let you be able to prove to people that you are

> serious about Jim possibly hurting himself and/or

> hurting you again. That way the doctors could see

> exactly how he acts at home and how agitated he gets

> and what you are up against.

>

> Like I said, I'm not sure this is a good idea, but I

> thought I would throw it out there!

>

> Good Luck!

> Re: Kath

>

> Hi Kath,

> Thank you for your support and for the advice. I

> had

> to laugh at your remark, " apparently I have the

> same

> look as you. " hahahahahahahaha It's like I speak

> and

> nothing comes out I guess. I hear it, but they

> don't.

> How much more distressed do I have to be to get

> help??!! Of course, they see Jim, who is very good

> at

> " Showtime " and acts calm and sweet amongst other

> people and makes me look like the insane one. I

> could

> just imagine their thinking, " How could anyone

> have a

> problem with this nice gentle man? " I just hate

> that

> he can put that face on. It is so amazing to me

> how he

> can do that. How can he be totally out of control,

> confused and combative and when people show up

> like

> paramedics or hospital staff, he is perfectly calm

> and

> acts as if he is in control of himself. Even lucid

> enough to answer how old he is and his name and my

> name, when moments before, he didn't know my name.

> It's awfully hard to get people to understand what

> I

> am going through when they see him and he does

> " Showtime " ARGHHHHHHHHHHHH!

> Bravo for you to get your Christmas things out and

> decorated. I am impressed. You made me feel that I

> have to get going now. If you can do it, I can do

> it!

> It's nice that your son gives you that

> inspiration.

> You gave me a Jolt now to get going.

> Wishing you the best of holidays! HUGE HUGS, Jan

>

> P.S. I forgot to mention, on our Thanksgiving last

> month, my family went to a restaurant for

> Thanksgiving

> Dinner. I have done Thanksgiving for decades, but

> have sold a lot of my cookware to scale down for

> my

> move when Jim goes into a facility. The restaurant

> had

> a bar and I ordered " Lemon Drops " and made a toast

> to

> each and every one of you here " When life hands

> you

> lemons, make " Lemon Drops " (Lemonade) Down the

> Hatch.

> I wish you all a life full of " Lemon

> Drops/Lemonade "

> and no Lemons in the New Year!

>

> --- STEVE & KATHY WARD wrote:

>

> > Jan

> > You absolutely did the right thing by telling

> them

> > everything. You of all people did not hurt him

> on

> > purpose and you yourself have been hurt (I

> believe

> > the last time it was a black eye) in the process

> of

> > caring for Jim.

> >

> > Here in Canada I experienced a bad situation

> last

> > year when mom broke her arm. The didn't give

> her

> > meds and by 2 pm in the afternoon she was off

> the

> > wall. She was saying there was a dog on the

> ceiling

> > that was on fire, she was yelling for the

> police,

> > she finally was able to take her meds at 6 pm

> but

> > refused them and any water because she believed

> she

> > was being poisoned, she couldn't even stand up

> and

> > they wanted us to take her home. I apparently

> have

> > the same look as you as they said there was

> nothing

> > they could do. I wanted them to keep her

> overnight,

> > in fact I begged them,. but was told no.

> >

> > After all that happened, another parent at my

> > daycare told me her mom had a similar problem

> and

> > she learned that they MUST keep them if you tell

> > them that you believe that they are a danger to

> > themselves or others. I don't know if this is

> true,

> > here or there but damn it I would sure use that

> line

> > next time I was in that situation. I would add

> that

> > if they ignore this that they would then be

> totally

> > responsible for anything that happened should

> any

> > harm come to the patient or anyone else and make

> > them sign something that they were warned about

> what

> > might happen.

> >

> > It's worth a try...hope this helps.\

> >

> > Kath

> >

> > Janet Colello wrote:

> > I CAN NOT express how much I appreciate your

> > helpfulness. I will try everything you give me.

> > Thank

> > you also for turning to the other Jan C. in

> > California, she may know something. I feel like

> I

> > have

> > reached nothing but dead ends. I must look like

> the

> > kind of person that can withstand anything even

> when

> > I

> > am crying, because they all seem to see me, but

> not

> > hear me.

> > I did get Jim out the door to his Day Program. I

> > told

> > the director about my problems. They have to

> record

> > everything told to them, maybe even report it in

> > California. I don't know what is going to happen

> if

> > anything. I feel so badly about the bruises on

> Jim's

> > arms. I didn't know I was that strong to cause

> that,

> > but with older people their skin is very fragile

> I

> > guess. I am going to call the Alzheimer's

> > Association

> > now. Jan

> >

>

=== message truncated ===

__________________________________________________

December 19, 2005

MY MOM WAS FIRST DIAGNOSED IN FALL OF 03 AND DIDN'T START TAKING ANYTHING UNTIL

SHE HAD SOME KIND OF BLACK OUT ANXIETY EVENT HAPPEN AT A BLUE GRASS FESTIVAL(

HER LAST TRIP ANYWHERE AND SHE USED TO GO ALL THE TIME). SHE HAD A BAD COLD TOO

HER FRIENDS BROUGHT HER HOME THE NEXT MORNING AFTER SHE REACTED SO BADLY TO THEM

ALL. I TOOK HER TO THE DOC AND HE STARTED HER ON ZYPREXA AND SHE WENT NUTSSSS

TWO DAYS LATER AFTER BEGINNING THAT MED. THAT WAS ON FRIDAY BY WED I HAD TO

CALL FIRE DEPT TO GET HER TO UNDERSTAND SHE HAD TO GO THE HOPSITAL. HOSPITAL

KEPT HER NINE DAYS (MAR '04) HER BOYFRIEND ALSO FOUND ANOTHER LADY THEN TOO.

MY MOM CAME OUT OF THE HOSPITAL IN TERRIBLE CONFUSION. AND REALLY DIDN'T KNOW

WHO I WAS. ABOUT 3 WEEKS ON THE ARICEPT SHE CLEARED UPP AND THEN STARTED

MOURNING HER BOYFRIEND OF 3 YEARS AFTER SHE FOUND OUT HE MARRIED SOMEONE WITHIN

2 MONTHS. SHE CLEARED UP FROM THE CONFUSION AND THE ONLY THING SHE WASN'T ABLE

TO DO ANYMORE WAS DRIVE (SHE WAS AFRAID TO) THEN

DURING THE FALL '05 SHE WENT DOWN HILL NOW SHE CAN'T FUNCTION ALONE ANYMORE

EXCEPT TO USE THE RESTROOM AND WASH DISHES AND DANCE AT THE SENIOR CENTER ON

FRIDAYS ( HER GIRLFRIENDS GO WITH) EVERYTHING ELSE I HELP HER WITH AND I HAVE A

GIRLFRIEND THAT STAYS WITH HER WHILE I WORK.. SHE ALSO START ED THE NUMENDA

LAST CHRISTMAS AND HAS BEEN ON ZOLOFT THE WHOLE TIME BUT OH SHE DID GET A

TERRIBLE COLD WHEN SHE CHANGED FOR THE WORST THIS FALL. IT'S JUST SAD. MIDGE

Ann & Willy wrote:

Oh dear, I think we need some help! I'm not even sure what kind of help I

need to ask for - my mother (who is 86) seems to be at an early stage of this,

compared with what a lot of you are describing. (I sort of get the idea that

Lewy Body progresses fast - is this so?) She was diagnosed with Parkinsons

almost a year ago (after one geriontologist (?) had told her two months before

(in my presence!) that one thing he could tell her for sure is that she didn't

have Parkinsons). So she began levodopa/cardopa (Sinemet?) and that seemed to

help the mobility difficulties a lot. But then she had a repeat of the memory

eval. in August and they now think she has Lewy Body. One thing that

complicates this is that she has a history of extreme anxiety around any

medication (fear of side effects) - fortunately she hasn't needed much of

anything up until now. So she tried Aricept, and couldn't tolerate that. She

started something else which I can't remember the name of a few days a!

go, and said she can't stand that, either. I think she has the right to chose

not to take something that makes her feel awful and is not going to " cure " her,

especially at her age, but I'm concerned that she doesn't really understand the

possible consequences of this choice (although the dr. did tell her that the

goal of the medication was to keep her out of a nursing home for as long as

possible). She is still pretty " with-it " and reads all the inserts with the

drugs she gets. I don't know what I should do. She's eventually going to get

to a terrible point, if what I've been reading here is any indication, and the

drugs will only postpone that, so maybe she's better off staying in denial and

enjoying the time she has left. I'd love to hear your reactions to this,

especially how you handled the early stages of the diagnosis.

Thanks so much!!!

Ann in Wisconsin

Welcome to LBDcaregivers.

December 24, 2005

May you have a wonderful day tomorrow! And, may all of your wishes and

desires come trule. Do something strictly for yourself, away from the

interruptions. Merry Christmas and Happy New Year! Sherry O:)

December 29, 2005

Thanks ,

My biggest problem right now is learning how to accept the part that i might

never be able to funcion like i did before the accedenct and it sucks witht the

fact i was stopped at a red light when it happened. I was so powerless and it

isnn't even like i can say well if i didn't do this or eat that it wouldn't of

happened. How do you emotioanlly deal with being in pain everyday and not being

able to do all the things you used to do.

~~ wrote:

*,*

*first of all i want to welcome you to our family here online and you have

come to the right place- some amazing people here. We stick together in

thick and thin *

*I am sorry to hear your disability got cut off and now you have to work. I

am always scared of that cause i dont get SSD- i get disability thru my last

job and i worry sometimes cause they can be idiots. *

*If i lost my money i wouldnt be able to physically work so that scares me.*

*I wish they didnt cut you off.*

*Please know we are here for you hun, you can ask questions, vent away and

yell and youll get lots of hugs and support!!!!*

**

* in NC*

*(ps i love your name- always loved name jessica:)*

December 29, 2005

i complety identify with that, after the accident i honeslty thought i would be

better in a week or two or a month, then i thought physical therapy would do it

and then i put all hope on the cortisone shots and i have had two and if

anything they made it wor4se.... but i think it might just be the timeing of the

shots since they happened right around winter time. Once the two shots didn't

help at all... it really got to me since that is pretty much the last action

before surgery which i don't want...

~~ wrote: *What a good question and sometimes I

just honestly do not have the answer.

When i first fell down the stairs I thought maybe id be hurt for a few

months and then i could get back to normal. I had a really good job at a

mortgage company and was getting things together and even bought a newer

car. Then i got hurt, lost my job and found out about RSD and what it would

do to me.*

*It has since been over 4 years....in april of 06 it will be my 5yr

''anniversary'' since i got hurt and I just try to take day by day and pray

that things will someday get better. i am 26yrs old and know i have

plenty of time to live but hope i wont be this bad or even worse for rest of

my life.*

*I have gone through crying spells, depression and the thought of why even

bother waking up today- nothing special to look forward to....i have some

hard times and some ok days.*

*The only advice i can give you is to take one day at a time and live that

day without worrying about days, weeks and months ect from now.*

*The support groups have been a lifeline for me!!!*

*Please know you can email me thru group or prvately anytime!!! I will do my

best to help however i can and just chat *

*Take care and know things have to get better!*

**

January 9, 2006

You've got to have a anesthesiologist/pain doctor for RSD. In Wellington,

FL, where I go, there's such a doctor that patients travel over 5-hrs. one way

to see him every month. It can get better, in as much as the attacks aren't as

long or as frequent. Winter takes its toll, as well as getting upset or high

blood pressure. You've got to learn how to prevent the acute stages. You've

got to learn about your body. You then work towards not getting in a

situation which causes you to get into terrible attacks. You've got to get

educated.

I don't know anyone over there in Bradenton. Maybe someone else who reads

this will, or even your doctor. You've got to get to a pain doctor, who is an

anetheisiologist. If another RSD patient does not do the referring, I'd

attempt to get another opinion. Some deep breathing, long and slow can help

relax

you. Mind over matter, so may I say, I could not do this without a church

body praying for me If you need to talk to me, Angel90s@... a/k/a Sherry

O:)

January 17, 2006

Hi...

One way to deal with a 'complainer' like you described, is to go ahead and

let her complain about whatever....then don't talk about what she just said.

..change the subject. If she goes back to some other complaint, listen, and

then change the subject. If she's a continual complainer, and doesn't get

the message after a few visits that you are NOT going to respond to her

complaining, then you have to ask yourself if she is really a friend, and if

you really want to be around her...because her complaints are not going to

do your emotional stability any good.

If she has half a brain, she'll realize after a bit, that you are not going

to respond to her complaints...and she'll stop...just don't talk about pain

issues in front of her. It will just open up a crack for her to crawl into,

and start up again. Keep the pain issues for your friends who understand..

and you might tell your other friend what you are doing, (privately) so that

if the two of them are both at your house, your other friend can do the same

thing, and change the subject, when 'complainer' gets done talking about her

'stuff'. Don't be rude and interrupt her...let her vent...and then just

respond with 'hmmm' and change the subject.

One way of dealing with it...

gustate et videte quam bonus sit Dominus....

le

Sr. St. of the Cross, OCDS

" I always feel I have to take a stand, and there's always someone on hand to

hate me for standing there. I always feel I have to open my mouth, and every

time I do I offend someone somewhere. "

--Ani diFranco, " What If No One's Watching "

Wife to Salvador, Mom to (7), our child of the heart in Ecuador, Manda,

our child of the heart in Idaho, and 6 wee babes in God's tender arms.

January 18, 2006

This was tuely an awesome send, about the complainer. I will have to remember

that, if I hear myself complain, this is one of those tuck it in my heart Lord.

Thank You from Curly

Guardians wrote: Hi...