Re: (unknown)

June 3, 2002

Harold, I am so sorry about your wife. If you are up to it, I would be

interested in

knowing when she got ill, what her symptoms were, what meds she was

given....etc.

Anything that you are willing to share. Although all LBD sufferers are

different, there

are also similarities. Does she take Sinemet for the stiffness?

Mai-Liis

July 16, 2002

Wow, this piece is one that really makes you think. It was wonderful!

Thank you for sharing it.

> (unknown)

>

> This is a nice piece that a good friend sent to me. It shows how big a

> diffrence we can make in a persons life without even thinking......Shirley

>

> PROUD MOTHER OF A SAILOR

>

> THE CAB RIDE

> >

> >Twenty years ago, I drove a cab for a living.

> >When I arrived at 2:30 a.m., the building was dark

> >except for a single light in a ground floor window.

> >Under these circumstances, many drivers would just

> >honk once or twice, wait a minute, then drive away.

> >

> >But I had seen too many impoverished people who

> >depended on taxis as their only means of

> >transportation. Unless a situation smelled of

> >danger, I always went to the door. This passenger

> >might be someone who needs my assistance, I reasoned

> >to myself.

> >

> >So I walked to the door and knocked. " Just a

> >minute " , answered a frail, elderly voice. I could

> >hear something being dragged across the floor.

> >

> >After a long pause, the door opened. A small woman

> >in her 80s stood before me. She was wearing a print

> >dress and a pillbox hat with a veil pinned on it,

> >like somebody out of a 1940s movie.

> >

> >By her side was a small nylon suitcase. The

> >apartment looked as if no one had lived in it for

> >years. All the furniture was covered with sheets.

> >There were no clocks on the walls, no knickknacks or

> >utensils on the counters.

> >In the corner was a cardboard box filled with photos

> >and glassware.

> >

> > " Would you carry my bag out to the car? " she said.

> >I took the suitcase to the cab, then returned to

> >assist the woman.

> >

> >She took my arm and we walked slowly toward the

> >curb. She kept thanking me for my kindness.

> >

> > " It's nothing " , I told her. " I just try to treat my passengers the

> >way I would want my mother treated " .

> >

> > " Oh, you're such a good boy " , she said.

> >

> >When we got in the cab, she gave me an address, then

> >asked, " Could you drive through downtown? "

> >

> > " It's not the shortest way, " I answered quickly.

> >

> > " Oh, I don't mind, " she said. " I'm in no hurry.

> >I'm on my way to a hospice " .

> >

> >I looked in the rearview mirror. Her eyes were

> >glistening.

> >

> > " I don't have any family left, " she continued. " The

> >doctor says I don't have very long. "

> >

> >I quietly reached over and shut off the meter.

> > " What route would you like me to take? " I asked.

> >

> >For the next two hours, we drove through the city.

> >She showed me the building where she had once worked

> >as an elevator operator. We drove through the

> >neighborhood where she and her husband had lived

> >when they were newlyweds. She had me pull up in

> >front of a furniture warehouse that had once been a

> >ballroom where she had gone dancing as a girl.

> >

> >Sometimes she'd ask me to slow in front of a

> >particular building or corner and would sit staring

> >into the darkness, saying nothing.

> >

> >As the first hint of sun was creasing the horizon,

> >she suddenly said, " I'm tired. Let's go now. "

> >

> >We drove in silence to the address she had given me.

> >It was a low building, like a small convalescent

> >home, with a driveway that passed under a portico.

> >

> >Two orderlies came out to the cab as soon as we

> >pulled up. They were solicitous and intent,

> >watching her every move. They must have been

> >expecting her.

> >

> >I opened the trunk and took the small suitcase to

> >the door. The woman was already seated in a

> >wheelchair.

> >

> > " How much do I owe you? " she asked, reaching into

> >her purse.

> > " Nothing, "

> >I said.

> >

> > " You have to make a living, " she answered.

> >

> > " There are other passengers, " I responded.

> >Almost without thinking, I bent and gave her a hug.

> >She held onto me tightly.

> >

> > " You gave an old woman a little moment of joy, " she

> >said. " Thank you. "

> >

> >I squeezed her hand, then walked into the dim

> >morning light.

> >Behind me, a door shut. It was the sound of the

> >closing of a life.

> >

> >I didn't pick up any more passengers that shift. I

> >drove aimlessly, lost in thought. For the rest of

> >that day, I could hardly talk.

> >

> >What if that woman had gotten an angry driver, or

> >one who was impatient to end his shift?

> >What if I had refused to take the run, or had honked

> >once, then driven away?

> >

> >On a quick review, I don't think that I have done

> >anything more important in my life.

> >We're conditioned to think that our lives revolve

> >around great moments.

> >But great moments often catch us

> >unaware--beautifully wrapped in what others may

> >consider a small one.

> >

> >PEOPLE MAY NOT REMEMBER EXACTLY WHAT YOU DID, OR

> >WHAT YOU SAID,

> >~BUT ~

> >THEY WILL ALWAYS REMEMBER HOW YOU MADE THEM FEEL.

> >

>

> _________________________________________________________________

> Chat with friends online, try MSN Messenger: <http://messenger.msn.com>

>

July 25, 2002

You are doing everything you can. One thing I have learned, is that you can

never get to comfortable with any good phase they are going through. I just

cherish it as long as I can, knowing, that bad days will inevitably creep

in. When they do, I roll with it as best I can, and pray the good days are

just ahead. It is a very difficult experience. I find distracting my MIL

works well for her. If she is talking about something " off the wall " , I

will change the subject, read something to her, have her tell me about how

to make her salsa or something like that. If I am not there when it is

happening, I have the staff do exactly what I would do. Sometimes just

having her go in her room and listen to the radio calms her right down.

Remember to take care of yourself too. Go get a message, a pedicure, or

something nice for just you! You deserve it!

I hope this phase passes quickly for you and your Father. I will keep you

in my prayers. Good luck with things.

> (unknown)

>

> I can sympathize with the off and on periods...last

> week my father was really doing well...very coherent

> and I, of course, thought things were going back to

> normal...well, this week he's been off the wall again

> talking about going to court and seeing men in his

> room and in the hallways..this morning he called me at

> 5:30 am to tell me there was a lady in his bed and she

> wouldn't leave...wanted to know if she could get at

> his money....he may need to call the police....last

> night when I saw him in the adult home he is at I

> talked to him until I was blue in the face trying to

> make him understand and he seems to at the time but

> goes right back into that " zone " when I leave...but I

> guess with this disease that's how it will be...hard

> to deal with sometimes because when you get your hopes

> up they come crashing down again with the next

> setback...I keep trying to tell myself I am doing all

> I can for him by keeping the doctors informed, having

> him a safe place, etc. but its hard not to feel guilty

> and responsible even though I know that I'm not...I

> keep thinking what else can I do or what am I

> missing...starting seeing a psychologist but he has

> basically told me that I have to decide for myself how

> to deal with the situation...he can give me some tools

> to try to help cope with the situation but ultimately

> I have to be the one to deal with it in my own

> way...hopefully I'll find a way soon so I'm not

> stressed out constantly (like I am now) about the

> situation...how does everyone else do this every

> day?!!Thanks again for listening......

>

> __________________________________________________

>

July 25, 2002

I wish I had the answers. Many years ago when my first born had open heart

surgery I decided I wasn't going to spend my time worring about the what

ifs. I figured when the time came if he didn't pull through then that would

be my time to worry. He did great. With mom I try to just think about the

day to day. Eaiser said than done. I worry about her constantly but I am so

busy with my four children and working that I don't have time to think too

much. Try to keep busy. I don't know why our loved ones are inflicted with

this horrible disease but if you stop to think there are many horrors in

today's world. I guess this is one of them. I'm sorry I guess you asked the

wrong person. I guess we all just learn to deal in our own way. Take care

and hope you can find comfort in knowing that you are not

alone...........Shirley

" I know God won't give me more than I can handle. I just wish He didn't

trust me so much " .

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: (unknown)

>Date: Thu, 25 Jul 2002 07:36:30 -0700 (PDT)

>I have to be the one to deal with it in my own

>way...hopefully I'll find a way soon so I'm not

>stressed out constantly (like I am now) about the

>situation...how does everyone else do this every

>day?!!Thanks again for listening......

>

>__________________________________________________

>

July 31, 2002

I do not know if you have any Early Intervention

Programs where you live. My daughter has Ocular Motor

Apraxia and Polymicrogyria and we were eligible for

free occupational therapy. Within her first two weeks

of therapy they had her walking- about around your

sons age. Good luck.

>

> ---------------------------------

>

July 31, 2002

i just bought pipsqueakers from pipsqueakers.com. sneakers that squeak. i heard

about them here. casey is only 1 but he loves to kick and hear them. writing

one-handed the other is in casey's mouth, he is teething.

Sharon & Casey PMG 1 year

deanna uhls wrote: Hello everyone. My son is 22

months old and was diagnosed with pmg in the 10th month of his life. He is doing

quite well. Although he is not walking. He was also diagnosed with a small

head,micro something I cant remember what the terminology is for that. He didn't

begin crawling until about the 17th or 18th month. But is doing very well with

that. We have him in therapy and I just wanted to know if any one else had any

more ideas on how to get him to walk Maybe there are some encouragement toys out

there I haven't ever come accross.

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

August 5, 2002

Shirley-

I must have missed something...is " what " working?

Sandie

August 5, 2002

Hiya, Shirley. Yes, it's working and passed the test. 200%. How are you? And

your Mom?

Bertha

August 5, 2002

Yes, Shirley,

It is later but I got your test message.

Donna

If you drink a diet soda with a candy bar, the calories in the candy bar

are canceled out by the diet soda.

August 6, 2002

yep.. lindad

(unknown)

is this working yet?

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

August 6, 2002

123

(unknown)

testing

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

August 22, 2002

Shirley

Thank you for sending my media letter to the group. I tried and tried

to no avail. Just not sure how to with WebTV. Hopefully with everyone

sending info. to the media, someone will get heard and this disease will

be known to the public. Again, thank you Shirley.

Sandie

Des Moines, IA

August 22, 2002

Welcome, Shirley.

Yes, this is a dreadful disease. I don't envy you that you have it to deal

with. The word is getting out slowly, but there is a long way to go to

educate both the general public and the medical and caregiving professions!

An important role for us as caregivers.

Cheryl

August 22, 2002

Welcome, Shirley.

Yes, this is a dreadful disease. I don't envy you that you have it to deal

with. The word is getting out slowly, but there is a long way to go to

educate both the general public and the medical and caregiving professions!

An important role for us as caregivers.

Cheryl

August 23, 2002

Shirley

So glad you wrote with an update on your parents. Also, I know that

wondering where your mom would fit in when your dad had surgery was a

concern of yours...sounds like you have figured it all out and it is all

under control. Best wishes to your dad for a speedy recovery. Be sure

to take care of yourself through out your moms stay and your dads

surgery.

Sandie

Des Moines, IA

August 23, 2002

Great letter, Sandie, I hope it brings some light on this situation. who

knows, there may be some great nuerologist out there doing studies on this

with different medications, and this may open the door to get some help for

our LO. Hope your dad is well,

August 23, 2002

Shirley, good luck. I will keep my fingers crossed that it turns out to be a

lovely visity. God bless,

August 23, 2002

Thanks for the positive input to my media input. I truly hope, for the

future, that this disease is made known posibbly with research as well.

As for my dad...he still isn't getting any better. For about a year and

a half his weight averaged 200 lbs. Starting in the middle of June, he

would refuse cares, and meals. Well, it has been almost routine for him

for the passed month to refuse cares and meals. As of Monday he weighs

162 lbs. I was told about a month ago that dad has been given nutrition

supplement drinks 2 times a day...I called the nh and told him to please

stop giving him them. With intuition I feel my dad has made a decison,

so with respect to him, and what little dignity he has left I have put

aside any feelings of selfishness to let him have peace.

Thanks to all for the concerns and for all prayers. Please keep my dad

in your prayers, that it will be His will.

Sandie

Des Moines, IA

August 24, 2002

>With intuition I feel my dad has made a decison,

> so with respect to him, and what little dignity he has left I have

>put aside any feelings of selfishness to let him have peace.

Sandie, you are a brave and a wonderful person, more people should

have the courage to follow their intuition. God Bless both you and

your dad. Barb in Alaska

August 25, 2002

Sandie, You are a strong person to stand behind your dad this way. It takes

alot of love and respect to make decisions that are best for our loved ones

and not what we want to do. I will keep you in my prayers. Hope your days

and nights become easier.

August 26, 2002

Thank you for the support and prayers.

Sandie

September 6, 2002

Oh, Mariea, but I have a lot to say about your post!

First, I am not aware of any categorizing of LBD that is in sync with AD.

Second, " I truly feel that she had the rapid decline because of the use of

the antipsychotics when she was hospitalized back in April " Cling to this

thought!! Agitation comes and goes.

Third, please be aware that the stopping of Aricept and its consequences may

not be recoverable. " Today he said he wanted to stop the Aricept. He said

he has seen

this cause agitation. Mom has been taking Aricept for at least 3 years now. "

Yes, it can cause agitation, but so can a lot of other things, including the

disease. That YOU are willing to roll with the vacillations is important.

The doctors often do not want to consider them and usually do not know the

patient as well as the caregiver does.

Fourth, does it make any difference in tx if this is AD or LBD? Goodness,

YES! So stick to your guns, because what works well for AD may be

devastating for LBD!!

Fifth, you may not be able to change things as they are as to what you know.

I am wishing peace for you and your mom, no matter what form it takes at

this point.

Cheryl

This said, I had a long and interesting conversation today with the research

coord for the study in which my LO and I are participating. He told me about

the differences in how research docs and practicing docs see things. They

are literally trained to approach a dx differently. Bottom line, I'll go with

the research doc!!

September 6, 2002

Oh, Mariea, but I have a lot to say about your post!

First, I am not aware of any categorizing of LBD that is in sync with AD.

Second, " I truly feel that she had the rapid decline because of the use of

the antipsychotics when she was hospitalized back in April " Cling to this

thought!! Agitation comes and goes.

Third, please be aware that the stopping of Aricept and its consequences may

not be recoverable. " Today he said he wanted to stop the Aricept. He said

he has seen

this cause agitation. Mom has been taking Aricept for at least 3 years now. "

Yes, it can cause agitation, but so can a lot of other things, including the

disease. That YOU are willing to roll with the vacillations is important.

The doctors often do not want to consider them and usually do not know the

patient as well as the caregiver does.

Fourth, does it make any difference in tx if this is AD or LBD? Goodness,

YES! So stick to your guns, because what works well for AD may be

devastating for LBD!!

Fifth, you may not be able to change things as they are as to what you know.

I am wishing peace for you and your mom, no matter what form it takes at

this point.

Cheryl

This said, I had a long and interesting conversation today with the research

coord for the study in which my LO and I are participating. He told me about

the differences in how research docs and practicing docs see things. They

are literally trained to approach a dx differently. Bottom line, I'll go with

the research doc!!

September 6, 2002

In a message dated 9/6/02 6:57:06 PM Central Daylight Time,

cindy.vechinski@... writes:

> I think Cheryl has had some bad experiences with Aricept with her husband if

> I am not mistaken.

Au contraire, . You must be thinking of someone else, because we have

had outstandingly excellent results with Aricept. There was a bad

experience, but that was in the beginning when a " novice " neurologist upped

the dosage at 2 months instead of allowing it the full 3 months to take

effect. A blessing in diguise, actually, because the s Hopkins doc took

my husband on as a regular patient, which the researchers rarely do, and

found him to be his " poster boy for what can go right. " Aricpt 5mg worked

very well for nearly 2.5 yrs, after which we bumped it up to 5mg 2x/d, about

1.5 yr ago. I remain confident that it is doing its thing.

My apologies if I am repeating myself on this list, but a lengthy

conversation with the researcher for the Predictor Studies today resulted in

a confirmation that my husband is beating the odds with decline expectations.

We are most fortunate, and I'd fight big time with anyone who wanted to try

Exelon at this point! ;-)

Cheryl

September 6, 2002