Re: Hello, Bobbie!

[Guest guest]

In a message dated 3/8/02 12:50:22 AM Central Standard Time,

randalls@... writes:

> But his nose literally drips like a faucet. Does anyone else have that

> problem?

>

Bobbie, I almost have to chuckle at that question, not because of the

dripping (as someone else said, we should own stock in Kleenex!) but because

this subject came up a few weeks ago with an incredible number of active

posters saying this is an issue in their houses, too. Until then I thought

it was simply the fact that my husband's posture is so poor that he can't

keep his head up for normal drainage, even when he wears his brace. It

appears there is more to it than that. Cheryl

[Guest guest]

Bobbie

So sorry you have missed the survey done on the runny nose situation.

Amazingly enough this seems to be a very common trait. None of us have

quite figured out if it is a side effect from a med. or just a trait of

the LBD. My dads nose runs 99.9 % of the time. Staff members usually

carry Kleenex or toilet paper just for my dad. And I think I now own

stock in Kleenex as every time I visit him, I use up the travel pack in

my purse. I have even resorted to stopping in his room and taking a

handful of toilet paper during our walks up and down the halls, just so

I have " backup " tissue. I am so sorry to hear this is such a struggle

for you. You should find that many people care and are so compasionate

in here. It is also comforting to know that we don't really need to

explain what we are going through......everyone in here truly knows what

we mean when we say " Today wasn't such a good day " . Please take care of

yourself and find time today for only you!!!

Sandie

Des Moines, IA

[Guest guest]

Hi ..Thank you for the welcome. Interesting about the runny nose

thing. We have tried four different perscriptions. Nothing works. No one

here ever related it to PD. Don't you sometimes think we are our own best

doctors? I read your e-mail about your son Tom. Somehow just having a name

put to our fighting men brings it closer to home. and Tom will be in

my prayers. What is 's condition? How long have you been caregiving?

Bobbie

>

> Reply-To: LBDcaregivers

> Date: Fri, 8 Mar 2002 02:58:04 -0700

> To: <LBDcaregivers >

> Subject: Re: Hello, Bobbie!

>

> Hi Bobbie,

> Yes! The runny nose! We had quite a discussion about that recently on this

> board. It seems that quite a few of our LOs have runny noses. In fact, it

> seemed like almost all of the people who regularly post replied that they were

> experiencing the same thing. Then, and I went to his neurologist this

> past Monday and she was very interested in the runny nose. She said they are

> experiencing a lot of that with their PD patients. 's PCP gave him a

> prescription for Nasacort for it, but using a nose spray is pretty hard for

> . It just drips back out. We haven't been good about using it, so I

> can't say if it would help.

>

> By the way, welcome to the group that no one really wants to need. We do need

> each other so much, and I've learned to care very much for the people who post

> here. They are a lifeline when I feel so alone - I always can come here and

> know that I'm not really alone.

>

>

>

>

[Guest guest]

Sandie........I feel like I have found a home. This is such a unique

disease. No one has ever heard of it. Do you all have ups and downs?

Sometimes Dick can't put two words together. It is getting hard to get a

full sentence out of him. Then, once in a while things are better. We are

hanging in together though. Once a week I have a darling girl that comes in

and spells me. Otherwise I use friends or drag him with me.

Thanks for sharing the " nose " thing....how interesting. Dick must go

through 10 handkerchiefs a day. He refuses to use kleenex.

Bobbie

> From: sanclown@...

> Reply-To: LBDcaregivers

> Date: Fri, 8 Mar 2002 09:31:23 -0600 (CST)

> To: LBDcaregivers

> Subject: Re: Hello, Bobbie!

>

> Bobbie

> So sorry you have missed the survey done on the runny nose situation.

> Amazingly enough this seems to be a very common trait. None of us have

> quite figured out if it is a side effect from a med. or just a trait of

> the LBD. My dads nose runs 99.9 % of the time. Staff members usually

> carry Kleenex or toilet paper just for my dad. And I think I now own

> stock in Kleenex as every time I visit him, I use up the travel pack in

> my purse. I have even resorted to stopping in his room and taking a

> handful of toilet paper during our walks up and down the halls, just so

> I have " backup " tissue. I am so sorry to hear this is such a struggle

> for you. You should find that many people care and are so compasionate

> in here. It is also comforting to know that we don't really need to

> explain what we are going through......everyone in here truly knows what

> we mean when we say " Today wasn't such a good day " . Please take care of

> yourself and find time today for only you!!!

> Sandie

> Des Moines, IA

>

>

>

>

[Guest guest]

,

It's all so sad.......I can keep myself up most of the time because I'm a

doer and I love my home. But every once in a while realization creeps in and

I'm at a loss.......the tears just wont stop.

This has been going on for us about the same amount of time as for the both

of you. Dick was a city manager and things were getting more stressful and

he was not coping well. He retired in 1992. We moved away from our children

to the foothills of the Sierras and built a home. Those were happy times

and that is where we live now. The Parkinsons was diagnosed about a year

later. Our son is a neurosurgeon and he knew early on what it was. He

encouraged us to " hurry up and have fun " . Initially, Dick was given only

Parkinsons meds. When his thinking and cognitive problems worsened he too

was put through a battery of tests. We added a psychiatrist to our list,

and he was given Arocept. He wasn't too bad for awhile. When the

stiffness, stooped posture, and shaking hands became a problem he was given

all the Sinemet enhancement drugs, one after another. (slow on and slow off

so it took forever) That's when the monster began to vist. He heard

voices, and became paranoid. We went through a terrible year. Once the

realization hit me that this was full blown LBD and not Parkinsons at all I

discussed it with the docs and we took away everything but the Arocept

(15mg), Sinemet 25/100, and Wellbutrin. It amazes me that we were going to

the best at UC San Franciso and Stanford. Jeff, our son, knew it all along

but didn't want us to give up hope. I also think he was protecting me.

It's been terribly difficult for him. This leads us to the here and

now........it seems to me that the last 6 months have really brought a

downward spiral. There is very little that he can do, maybe sweep the porch,

get the mail, pour a glass of milk..... but he gets so mixed up.......I

don't really mind doing everything. I feel lucky that I am the caretaker

and not the patient. He is very sweet and easy most of the time.(I wonder if

this will change) I miss not having any conversation and I miss him not

being able to make even the simplest decision. Again.......it's so sad..

Thanks for being interested. Oh I have one more question......is any one

else bothered by terrible sleep apnea type snoring? Dick was never a snorer

until this last year and now it is really scary............he shakes the

house.

Thinking of my new cyber friends......Bobbie

>

> Reply-To: LBDcaregivers

> Date: Fri, 8 Mar 2002 23:35:35 -0700

> To: <LBDcaregivers >

> Subject: Re: Hello, Bobbie!

>

> Bobbie,

> Thanks for your kind words about my son. You asked about my husband, his

> condition and how long I've been caregiving. started showing signs of

> something being wrong in 1992. It started when Tom left for college. Since

> Tom is our oldest and and he are so close, I thought it might be

> depression, and so did the doctors. They put on Zoloft, but he continued

> to get worse. At first, he saw dark, shadowy people around the house and on

> street corners, etc. Then, he started to slow down in his walking and his

> speech became harder to understand. When he didn't respond to the Zoloft,

> doctors ran lots of tests on him to rule out anything else, and then diagnosed

> Parkinson's. never had a tremor, but he did lose the natural arm swing,

> and his facial expression when he was at rest looked like someone with

> Parkinson's. He started having balance problems around 1994 and fell while

> playing ping pong and broke a couple of ribs. He started falling asleep a

> lot, too.

>

> We moved to Colorado in 1996 to be near our two younger children, who were at

> Colorado State University, and near 's older daughter, who has lived in

> Fort for years. 's older son has since moved here, too.

> continued to decline, and I was aware of decreased cognitive functioning, but

> he could still fool most people. I think most of the family thought I was the

> one with a problem for awhile. Then, his neurologist increased his

> Parkinson's medications and it put into an almost zombie like state. He

> could barely move and didn't make any sense. And, he started hallucinating.

> We changed neurologists. The new neurologist quickly diagnosed LBD and

> reduced his Parkinson's meds. Too much of the Parkinson's meds can cause

> adverse cognitive reactions in LBD patients. Then, we started on

> Aricept, which helped for awhile. When his hallucinations reappeared, we

> started Seroquel, which also helped for awhile. Now he is getting bad again.

> He's also becoming paranoid about his money and other things. He feels like

> he has no knowledge of what is going on in his life, and he's right. But, I

> can't think of any way to really help him. I try things, but he is so

> confused and just can't reason anything out anymore.

>

> So, that's my story. Pretty much like the rest on this board. Now, I look

> forward to hearing more about your husband.

>

>

>

>

[Guest guest]

Bobbie

Yes, my dad can change in a minute. Typically this disease is called

the " hour by hour " disease. But my dad can change in a sentence. At

times, I know he is really with it, then in a moment he changes, seems

increasingly depressed and agitated, and is a totally different man.

Mornings still seem to be the worst for him, yet there are nights when

he stays up ALL night. He may sleep all day, one day, and stay up the

whole day the next. Fluctuating seems so mild compared to what I see my

dad go through. I do however, refuse to completely give in to this

disease, for the sake of my dad, and any future LBD people and

caregivers I may encounter in my lifetime. Please keep posting,

venting, chatting, whatever you need to help get you through. I love to

read the emails here, and hope that I may be able to touch atleast one

person in here. I also need the group for venting as I realized

yesterday that I have no one else to talk about this disease with that

totally knows what I am going through. Not even my brother.

Thankfully, he is sheltered from the pain and confusion this disease

gives. Take care of yourself, and I look forward to seeing more

postings from you.

Sandie

Des Moines, IA

[Guest guest]

Bobbie

I can feel your excitement here. I too am excited when I can

communicate and have responses to my emails. I truly have no one else

to talk to about this, that really knows what is going on with my dad.

Even to know the common characteristics we are all experiencing gives me

a sort of peace knowing I am not alone. Keep all of us posted!!!!! And

any questions, just ask, there are many resources out there, maybe we

can be of some help.

Sandie

Des Moines, IA

[Guest guest]

Those are precious, encouraging words, Sandie. Thank you. Does your dad

live with you? My dad is 91 and is sharper than my husband. You take care

too. What a wonderful daughter you are.

Bobbie

> From: sanclown@...

> Reply-To: LBDcaregivers

> Date: Mon, 11 Mar 2002 09:28:09 -0600 (CST)

> To: LBDcaregivers

> Subject: Re: Hello, Bobbie!

>

> Bobbie

> Wow, don't even know where to start. Guess I will just say, hang in

> there " til the end " and make the best of life as you now know it. You

> are lucky to have a son that actually has the knowledge we all long for.

> Keep your head up and know you are doing a wonderful job at caregiving.

> Sandie

> Des Moines, IA

>

>

>

>