Re: Re: DLBD Patient would like to say Hello/Welcome Patti

[Guest guest]

patti,

my goodness your medicine list is as bad as mine and i didn think anyone had

on e as long as mine. there are others taht can tell you about medicines

since i dont know very much aboutthem . but smiley sharon is in your corner,

and

here for you anyway i can be.

sharon m

a smile a day keeps the meanies away!!!

[Guest guest]

Hi Patti,

Thank you so much for your response. You are truly an

amazing person. You are on a lot of meds. I try to

keep my husband on the least amount that I can, since

people with LBD, DLBD, CLBD are very sensitive to

medications and I have heard that less is best. The

fact that you are feeling 90+% better says something

about your regimen. My husband is on Sinemet 25/250

4X's a day, Seroquel 25mg.4X's a day. 12.5mg of

Atenolol for blood pressure and Vicodin at bedtime for

Restless Leg Syndrome to deaden the sensations he

feels in his legs so he can sleep. He was on Klonopin,

but had a very bad reaction to it. He also took

Mirapex at one time and it was the miracle drug for

him, but then it lost its effect and did nothing for

him after awhile. It lasted for about 2 and a half

years before it lost its effect. The reason I asked

about if you had surgery before all of this occured is

many people on this site have noticed that the

beginnings of LBD symptoms started after surgery and

that the anesthetics could have played a part in the

development of the disease. It is part of the problem

as is antipsychotic drugs and the adverse affect that

they can cause for some people with LBD, DLBD, CLBD.

You have a lot of the fears and symptoms that my

husband experiences. I had to have his license revoked

a few years ago. He was driving and hallucinated while

driving that he was in an accident and he saw people

all around and stepped out of the car to see what

happened on a very busy intersection. Of course, there

was no accident and he was roaming the street in the

middle of traffic. Some road construction workers went

and got him and followed him home and they told me the

story of him wandering in traffic. It shook my husband

up to say the least. He still wanted to drive though

and he would sneak out to the car and was in a small

accident. Thank goodness no one was hurt. It was at

that point I had a " Kill Switch " installed in the car

when it went into repairs and when I pulled the device

out, the car wouldn't start and he could never figure

out why his key to the car didn't work and mine did

and he stopped trying to take the car after a few

failed attempts and I haven't had the problem for a

few years now. I would be interested in your

hallucinatory period. I really appreciate your opening

up to us about your experiences. You have already

helped me see some things and given me a better

understanding of the patients point of view.

Thank you so much!..............Hugs, Jan

--- Patti wrote:

> Hello Jan,

> Yes I had my right ovary removed then my uterus and

> later had my gall

> bladder removed. All of this in my late 20's early

> to mid 30's. I

> don't know that they were related in anyway.

> My medications are as follows:

> Reminyl 8 mg 2x daily

> Trilisate 750 mg 3x daily

> Premarin 0.645 mg daily

> Plavix 75 mg daily

> Detrol La 4 mg 1 daily

> Zestril 20 mg 1/4 tab daily

> Klonopin 0.5 mg. daily

> Trazodone 100 mg 1 bedtime

> Requip 0.25 mg 2x daily 0.5 mg bedtime

> Lexapro 10 mg 1/2 tab daily

> Arthrotec 75 75-200 mg 2x daily

> Carbamazepine 200 mg 3x daily

> Keflex 250 mg daily

> Maxalt 10 mg. as needed for migraine

> Albuterol 2 puffs 2x- 4x daily as needed for

> shortness of breath.

> Nasalide nose spray daily as needed

> Some eye drops as needed.

>

> I haven't always been this clear. I had to learn how

> to use the

> computer again after coming home from the hospital

> and still have not

> regained all the abilities I had before that time. I

> vary from day to

> day and have mood swings. Lack of concentration is

> getting again. It

> is funny though because some things come so easily

> and yet others are

> very hard. Each day is so different from the next.

> It doesn't seem to

> take alot of activity around me to cause some

> panicky feelings. Multi-

> tasking is a hard one for me. I do better if I can

> just take my time

> and do things a step at a time. I have difficulty

> remembering what to

> do when several different steps are given to me at

> one time and

> usually just get confused and frustated. I find I

> get nervous and

> anxious around strangers so if I go out shopping I

> try to keep my

> mind focused on what I am doing and I am not so

> observant about what

> is going on around me. My preference is to stay

> home. I voluntarily

> gave up driving a few years ago due to confusion and

> personally

> scaring myself. Anything that moves quickly can

> startle me and scare

> me. The Dr. says I am going through another

> readjustment period.

> Having to really readjust since he told me. I asked

> though and I

> wanted to know and think it is for the best in the

> long run.

>

> I do hope I can help you all in some way. Please

> feel free to ask

> questions. I will do my best to answer them for you.

> I will tell you

> what I can if you like about my Hallucinatory

> period. Just ask!

> Thanks for your support.

> Hugs,

> Patti

>

>

>

>

>

> > > Hello to all,

> > > I would first lke to let you all know what

> wonderful

> > > people you are I

> > > know as a daughter of taking care of my mother,

> > > father and aunt how

> > > difficult it is for you in your position. I

> prayed I

> > > would never have

> > > to put my own children through this kind thing,

> but

> > > it wasn't in the

> > > cards. Life doesn't always give you what you

> want

> > > nor is it ever fair.

> > >

> > > A little background on me. I started having

> > > Parkinsonian symptoms at

> > > the age of 39. I am ow 55. It took many years

> > > before it was dagnosed

> > > with Parkinsonism in the meantime often was

> treated

> > > like a

> > > hypochondriac to the point I sometimes even

> > > questioned it myself. I

> > > have been with the same neurologist for over 10

> > > years nowHe is a

> > > Parkinson's and movement specialist. He has

> always

> > > said he didn't

> > > believe I had true or idiopathic Parkinson's,

> but

> > > one of the

> > > Parkinsonisms. He has been listening to my

> > > complaints and watching my

> > > symptoms since. In Febrary of 2003 I was

> > > hospitalized for 5 weeks. I

> > > had been having halluncinations both auditory

> and

> > > visual. I tried a

>

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[Guest guest]

patti,

you and your sister and family are in our prayers, keep the faith and

spirit.

sharon m

a smile a day keeps the meanies away!!!

[Guest guest]

patti,

my dad in his early stages had alot of paranoid hallucinations, that the

governtment was watching him, stalking him, fortunately he doesnt appear to have

these halluinations as much anymore, but then he feeels safer with my 4 dogs

'protecting ' him.

again, thaanks for sharing your story,

sharon m

a smile a day keeps the meanies away!!!