Hi Everyone

[Guest guest]

What is:

ED

erectile dysfunction

[Guest guest]

What is:

RP & ED

---

Manley

http://www.geocities.com/jim_p_manley/index.html

http://web.mac.com/jamespmanley/iWeb/Photoshop_Elements

God's Plan for Salvation

http://web.mac.com/jamespmanley/iWeb/Gods_plan/Welcome.html

I am 58 years old, diagnosed PCa 8-9-06 Gleason 9.

hasn't gone into the bone, has spread to my lungs

& bladder. Taking Casodex pills & Zoledex shots.

I am convinced that my GOD and Lord Jesus Christ

will heal me as a testimony to his love.

2 Chronicles 20

> Hi folks,, I just joined the group and wanted to thank the folks here

> for all the links and files. This group is great and I am very happy

> to join and learn from others who have the same problems as me

>

> I had RP back in febuary and a stroke 3 weeks later. I am recovering

> very nicely lately. I still have ED problems but my urinary problems

> are much better.... My right leg is still partialy numb but I am

> walking an hour a day in good weather, 3 miles usually... I keep

> seeing improvements in the leg and arm.

>

> I just turned 57 on Nov 17th so I am a still fairly youg man, I am a

> disabled vet and the VA is my primary care givers. They did the

> prostate surgery. They try their best and for the most part they do a

> good job.. They have budget problems and it is reflected in the care

> you get. I have had to educate myself a lot.... and look out for my

> own best course of treatment.

>

> I am blessed in the way I have recovered and I look forward to many

> years of life. My name is Joe, I am from Louisiana and we are sure

> looking forward to thanksgiving,,, I want to wish all of you a Happy

> Thanksgiving.

>

> thanks

> Joe

>

>

>

[Guest guest]

RP is the radical removal of the prostate by surgery

ED is erectile disfunction or impotence

B

Re: Hi Everyone

What is:RP & ED--- Manleyhttp://www.geocities.com/jim_p_manley/index.htmlhttp://web.mac.com/jamespmanley/iWeb/Photoshop_ElementsGod's Plan for Salvationhttp://web.mac.com/jamespmanley/iWeb/Gods_plan/Welcome.htmlI am 58 years old, diagnosed PCa 8-9-06 Gleason 9.hasn't gone into the bone, has spread to my lungs & bladder. Taking Casodex pills & Zoledex shots.I am convinced that my GOD and Lord Jesus Christwill heal me as a testimony to his love.2 Chronicles 20> Hi folks,, I just joined the group and wanted to thank the folks here> for all the links and files. This group is great and I am very happy> to join and learn from others who have the same problems as me>> I had RP back in febuary and a stroke 3 weeks later. I am recovering> very nicely lately. I still have ED problems but my urinary problems> are much better.... My right leg is still partialy numb but I am> walking an hour a day in good weather, 3 miles usually... I keep> seeing improvements in the leg and arm.>> I just turned 57 on Nov 17th so I am a still fairly youg man, I am a> disabled vet and the VA is my primary care givers. They did the> prostate surgery. They try their best and for the most part they do a> good job.. They have budget problems and it is reflected in the care> you get. I have had to educate myself a lot.... and look out for my> own best course of treatment.>> I am blessed in the way I have recovered and I look forward to many> years of life. My name is Joe, I am from Louisiana and we are sure> looking forward to thanksgiving,,, I want to wish all of you a Happy> Thanksgiving.>> thanks> Joe>>>

[Guest guest]

Hi all,

My name is and I am taking care of my 86 year old dad who suffers from

Dementia with Lewy Bodies. I can't remember how long he had the diagnosis--I am

thinking 3 to 4 years. He also suffers from Parkinsons-like disorder. He has

been steadily getting worse until this month where his health seemed to improve

but his hallucinations increased. I had to take him to the Emergency Room twice

last week. Once because he had a fractured rib from falling, the other because

he thought he couldn't urinate. Both times, it was in the middle of the night.

I am married with a 8 year old handicapped son. He cannot walk or have use of

his right hand. He is mentally challenged. My in-laws also live with us. My

father in law has Alzheimer's (11 years). I am a special education teacher in

Hawaii. I have a very supportive sister but she lives on the mainland. Our

home is like a zoo but my dad is taking over 50% of everyone's time.

I joined this group because lately I am going " crazy " . I feel that I need to

discuss with others who also share similar experiences. I feel very alone in

this battle.

I look forward to having some great discussions with you all.

Aloha,

[Guest guest]

Hello , Im sorry to hear about your situation.You have come to the right

place.The people here are amazing.When mom was alive I was her 24 hour

caregiver.I came here alot.For information, to vent and just be with people who

could understand .You are not alone.I am sorry you have to be here but am glad

that you chose to be.Heartfelt best to you.... Ron

________________________________

To: LBDcaregivers

Sent: Monday, May 18, 2009 5:03:15 AM

Subject: Hi Everyone

Hi all,

My name is and I am taking care of my 86 year old dad who suffers from

Dementia with Lewy Bodies. I can't remember how long he had the diagnosis--I am

thinking 3 to 4 years. He also suffers from Parkinsons-like disorder. He has

been steadily getting worse until this month where his health seemed to improve

but his hallucinations increased. I had to take him to the Emergency Room twice

last week. Once because he had a fractured rib from falling, the other because

he thought he couldn't urinate. Both times, it was in the middle of the night.

I am married with a 8 year old handicapped son. He cannot walk or have use of

his right hand. He is mentally challenged. My in-laws also live with us. My

father in law has Alzheimer's (11 years). I am a special education teacher in

Hawaii. I have a very supportive sister but she lives on the mainland. Our

home is like a zoo but my dad is taking over 50% of everyone's time.

I joined this group because lately I am going " crazy " . I feel that I need to

discuss with others who also share similar experiences. I feel very alone in

this battle.

I look forward to having some great discussions with you all.

Aloha,

[Guest guest]

Hi !,,

 

  Wow, sounds like you sure have your hands full! Welcome to the site! My name

is Susie and I onlly recently found this site myself, but there are some amazing

people on here and there's an awful lot of good information for you to go on.

   My Father also has PD/LBD ( parkinson's Disease with Lewy Bodies). and has

had it for approx 14 yrs,,, in just the past 3 months his health had went from

bad to awful! He cannot eat by himself, nor can he stand, ( although you'd never

be able to convience him of that!), and now he can no longer toliet himself!

Constipation seems to be an issue with LBD, and my father as well, couldn't no

longer urinate??? They placed him on a cathater, took him to a urologist and we

found his prostrate glands had swollen to the point it had cut off the flow of

urine thru his urethra,,, so now he has a permanent cathater... UGH! ( he hates

it, doesn't understand it and was constantly pulling at it, causeing a tear and

inf. on his penis),,,

   MY heart goes out to you,,,, What your trying to do at your house is most

certainly more than anyone should bear,,, have you comtemplated a NH??? I know

how hard that discission is to make,,, THE HARDEST OF YOUR LIFE,,,! I just had

to do it myself 3 months ago,,,  and now I'm positive I made the right

dicision.......

  Be carefull of the list of BAD Med's they put your father on as they will most

certainly make him worse!

  these are the meds that are generally NOT good:

BAD LBD MEDICATIONS

One of the symptoms of LBD is extreme sensitivity to many medications.

NEUROLEPTICS AND OPIATES ARE LIFE THREATENING.

DO NOT GIVE:

Haldol, Clozapine, Morphine, Demerol or any other neuroleptics or opiates.

All medications ending in " azine " may cause neuroleptic malignant syndrome.

AVOID:

Zyprexa/olanzapine

Risperdal/risperido ne

Ativan/lorazepam

Mirapex/pramipexole

Eldepryl/selegeline

Ambien/zolpidem

Ultram/tramadol

Detrol & Detropan

Benedryl (OTC allergy medication)

USE CAUTION:

Dilantin.... extremely careful monitoring of levels is needed.

Sinemet/carbidopa- levodopa may cause increased dementia, stiffness, and

hallucinations.

Cough and Cold medications

This is not a complete list of medications, which may cause serious consequences

in LBD patients. Bad reactions to strong antibiotics, for example, are not

uncommon. LBD patients who have been given the least medications, seem to do

better in the long run than those who have been more medicated.

Unfortunately, the LBD patient never goes back to the level of former

functioning when the troublesome medication is removed, and sometimes as with

neuroleptics, there may be no recovery.

LESS IS BEST ... and safest.

 God Bless You and your family in this journey,,, and I'm right here to talk if

you need someone!  Susie

Susie

Subject: Hi Everyone

To: LBDcaregivers

Date: Monday, May 18, 2009, 5:03 AM

Hi all,

My name is and I am taking care of my 86 year old dad who suffers from

Dementia with Lewy Bodies. I can't remember how long he had the diagnosis--I am

thinking 3 to 4 years. He also suffers from Parkinsons-like disorder. He has

been steadily getting worse until this month where his health seemed to improve

but his hallucinations increased. I had to take him to the Emergency Room twice

last week. Once because he had a fractured rib from falling, the other because

he thought he couldn't urinate. Both times, it was in the middle of the night.

I am married with a 8 year old handicapped son. He cannot walk or have use of

his right hand. He is mentally challenged. My in-laws also live with us. My

father in law has Alzheimer's (11 years). I am a special education teacher in

Hawaii. I have a very supportive sister but she lives on the mainland. Our home

is like a zoo but my dad is taking over 50% of everyone's time.

I joined this group because lately I am going " crazy " . I feel that I need to

discuss with others who also share similar experiences. I feel very alone in

this battle.

I look forward to having some great discussions with you all.

Aloha,

[Guest guest]

, you're not going " crazy. " But with the load you have, you have

every right to blow your top. I don't advise it though, it didn't work for me.

(big silly grin)

A big warm Texas welcome. I really feel for you more than you can know.

And, your poor wife! What is she enduring? The both of you are really in for

a long haul with a heavy load. I'm sure you are pulling together with all

you have for the strength to get up those steep hills. Oh my goodness! And I

thought caring for one was hard!!!

You will get lots of love, and caring here, as well as knowledge of what

to do and not do. Especially in medicines. We are here to care for each

other and in turn get care for ourselves. So, holler, spout off about the

problems you are handling. Laugh a lot if possible. You need all the laughter

you can have around you.

My very best to you and yours,

Love with a smile,

Imogene

Caregiver for my True Texas Gentleman Husband. Diagnosed with AD in 2005.

And then, with LBD 2006.

A happy personality is contagious. Infect someone today.

Yours Truly

In a message dated 5/19/2009 11:05:45 P.M. Central Daylight Time,

Iward27663@... writes:

Hi all,

My name is and I am taking care of my 86 year old dad who suffers

from Dementia with Lewy Bodies. I can't remember how long he had the

diagnosis--I am thinking 3 to 4 years. He also suffers from Parkinsons-like

disorder. He has been steadily getting worse until this month where his health

seemed to improve but his hallucinations increased. I had to take him to the

Emergency Room twice last week. Once because he had a fractured rib from

falling, the other because he thought he couldn't urinate. Both times, it

was in the middle of the night.

I am married with a 8 year old handicapped son. He cannot walk or have

use of his right hand. He is mentally challenged. My in-laws also live

with us. My father in law has Alzheimer's (11 years). I am a special

education teacher in Hawaii. I have a very supportive sister but she lives on

the

mainland. Our home is like a zoo but my dad is taking over 50% of

everyone's time.

I joined this group because lately I am going " crazy " . I feel that I need

to discuss with others who also share similar experiences. I feel very

alone in this battle.

I look forward to having some great discussions with you all.

Aloha,

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