Re: Digest Number 2950/Chip

[Guest guest]

Hi Chip,

Have you and your family ever considered a Memory

Study Program at a University?

I am in the process now of getting my husband into

one.

I have been influenced by the researchers at the

symposium in DC that stated that they need people in

the study programs for research. They stated it would

be very helpful in their studies of following up

families. To track genetics and to study if genetics

plays a part in the disease or genetics plus an

environmental pollution to trigger it. They have a lot

of variables that they want to study and get the

background of individuals to help pave the way in

finding the cause of this disease and the cure.

I don't know if they even can tell yet if this disease

is genetic, from what I have heard they don't know and

need to do more studies. Jan

--- cglaughter1@... wrote:

> Hi Friends,

> The subject of cramping came up on this digest as

> well as LBD running in the

> family.

> Cramping has been with me for some time. Not all the

> time. Just on occasion

> my hands cramp and my ankels and feet.When it occurs

> it causes enough to pain

> to gain notice from me. I thought it might be from

> Arthristis which runs in

> our family, but have not had it checked out with my

> family doctor yet? Any

> studies or information on cramping from LBD?

>

> I also wanted to say that I am the second in my

> immediate family too be

> diagnosed with LBJ. My Mom and Grandmother and an

> older Sister with Alzheimer's

> Disease and my eldest daughter with short term

> memory. My brother and I have some

> Parkinson like effects but to my knowledge the

> other's didn[t or don't.I was

> orginally diagnosed with the early stages of AD but

> the nerologist is leaning

> more toward LBD now. Dementia seems to run in my

> mom's side of the family.No

> tests have ever been done to prove that this is in

> our genes.However it's a

> real concern.

>

> Any thoughts? My best to all members and friends.

> Chip Gerber

>

>

> [Non-text portions of this message have been

> removed]

>

>

Jan Colello, wife of Jim, dx w/Parkinsons 1993 and LBD 2003San Francisco Bay

Area, California

__________________________________________________

[Guest guest]

Hello All,

Just a note, with the subject of genetics coming up, Mr. B is the only one in

the family with this disease and his closest relatives, 6 brothers and

sisters, don't/didn' have any signs of dementia, Alz, or LBD. All lived to be

well

into their 80s. Two sibs are still living (both in their late 80s) and are

still driving. Mr. B quit driving three years ago...on his own because he

didn't trust his depth perception. Maybe he would be a good study? I'll

mention

that when I talk to the Alz association today.

Peace to all this week and prayers are sent to the Midwest for more Peaceful

weather, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working!

* * * * * * * * *

Hi Chip,

Have you and your family ever considered a Memory

Study Program at a University?

I am in the process now of getting my husband into

one.

I have been influenced by the researchers at the

symposium in DC that stated that they need people in

the study programs for research. They stated it would

be very helpful in their studies of following up

families. To track genetics and to study if genetics

plays a part in the disease or genetics plus an

Environmental pollution to trigger it. They have a lot

of variables that they want to study and get the

background of individuals to help pave the way in

finding the cause of this disease and the cure.

I don't know if they even can tell yet if this disease

is genetic, from what I have heard they don't know and

need to do more studies. Jan

[Guest guest]

Hi Stevie,

Looking at Mr. B's med. list, I have to wonder if the hallies starting up again

is from

increased sensitivity to ES Tylenol. I know my mom became more and more

sensitive to

meds as her PDD progressed. Perhaps with the new pain med the ES could be

reduced to

regular or cut out altogether? In fact, I question if Mom's daily Tylenol is a

contributing

reason for her eyes being closed so much. Just a thought. What a good idea to

include

meds to sendings. Thank you to whomever thought to suggest the idea.

I find as I read the conference I think more and more of Mr. B and am so glad

you are in

touch about him again. Tell him crocuses are up here in Oakville, the forsythia

is

yellowing, spring is springing. And with that give him a big bear hug from

Canada!

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give

up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

>

> Hello All,

>

> Just a note, with the subject of genetics coming up, Mr. B is the only one in

> the family with this disease and his closest relatives, 6 brothers and

> sisters, don't/didn' have any signs of dementia, Alz, or LBD. All lived to be

well

> into their 80s. Two sibs are still living (both in their late 80s) and are

> still driving. Mr. B quit driving three years ago...on his own because he

> didn't trust his depth perception. Maybe he would be a good study? I'll

mention

> that when I talk to the Alz association today.

>

> Peace to all this week and prayers are sent to the Midwest for more Peaceful

> weather, Stevie

>

> Stevie in So. California

> LO - Mr. B (Uncle) 82 yrs.

> Lives in my home - 3 yrs.

> DX Parkinson's 1993

> DX LBD 2003 - probably has PDD

> End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

> started up again.

> Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

> Amitriptyline

> Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

> same since

> Daily BP usually 68/52

> Severe shoulder pain, hip pain, and shortness of breath.

> Now taking Trilisate Liquid for pain - seems to be working!

>

> * * * * * * * * *

> Hi Chip,

> Have you and your family ever considered a Memory

> Study Program at a University?

> I am in the process now of getting my husband into

> one.

> I have been influenced by the researchers at the

> symposium in DC that stated that they need people in

> the study programs for research. They stated it would

> be very helpful in their studies of following up

> families. To track genetics and to study if genetics

> plays a part in the disease or genetics plus an

> Environmental pollution to trigger it. They have a lot

> of variables that they want to study and get the

> background of individuals to help pave the way in

> finding the cause of this disease and the cure.

> I don't know if they even can tell yet if this disease

> is genetic, from what I have heard they don't know and

> need to do more studies. Jan

>

>

>

[Guest guest]

Hello ,

I thought it would be a good idea to include meds and a bit of info when

writing so the reader could have more info on what was going on with the LBD LO

and hopefully it will eliminate unnecessary questions and emails to resend and

stack up in the emailbox. I find it takes too much time to go back through all

the messages to find out who belongs to whom and what meds they were on.

Thank you for adding your info.

Regarding the ES Tylenol....we actually sporadically gave it to Mr. B because

he " didn't need it " as he always says (he hates to take medicine!), even

though he was in pain. Now we are giving him Trilisate Liquid for pain after

breakfast and before bedtime. He actually WANTS to take it so it must be doing

something. He says he has no pain, except when he transfers, but it's not as

bad as it used to be, and he feels " happy. " Much better than the depressed

shell I have witnessed for so many months. His speech takes time to decipher,

he

sleeps a lot more now, and his breathing is getting a bit labored/louder with

his mouth opening more. A very slow end stage and I want him to be as " happy "

as possible. If he weren't so " healthy " underneath this disease I think he

would have been gone months ago. With all that we are going through, he still

makes me smile everyday and I can see the old Mr. B in his eyes.

It's so wonderful to hear that Spring is Springing! My favourite time of

year as is Mr. B's. He used to famously grow Lilies of the Valley (when he

lived

in Utah) and send 4 dozen of them each year to one of his friends on 5th

Avenue in New York. I wish they would grow here in California.

Thank you so much for your concern and I will give Mr. B a bear hug from

Canada. He is so amazed that I go upstairs and talk to people on the computer!

Isn't that funny? He has no idea how it works! LOL

Much Peace to you and your Mum, Stevie

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

Hi Stevie,

Looking at Mr. B's med. list, I have to wonder if the hallies starting up

again is from

increased sensitivity to ES Tylenol. I know my mom became more and more

sensitive to

meds as her PDD progressed. Perhaps with the new pain med the ES could be

reduced to

regular or cut out altogether? In fact, I question if Mom's daily Tylenol is

a contributing

reason for her eyes being closed so much. Just a thought. What a good idea

to include

meds to sendings. Thank you to whomever thought to suggest the idea.

I find as I read the conference I think more and more of Mr. B and am so glad

you are in

touch about him again. Tell him crocuses are up here in Oakville, the

forsythia is

yellowing, spring is springing. And with that give him a big bear hug from

Canada!

, Oakville Ont.

Mom 92, 12 1/2 years " Parkinsons "

3 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to

give up her

licence 6 years ago.

Currently immobile, in tilt wheelchair, spoonfed pureed food. Spends most of

days behind

closed eyes.

Eltroxin, Tylenol twice a day.

[Guest guest]

Stevie,

Tell Mr B that I'll dedicate my flower bed with all the Lily of the Valley I

have here in MI. I can't even contain it as they spread like wild fire, but he

already knows that. My grandma grew them and I loved the smell of them. Now I

mow half of them down when I mow the grass because they have spread beyond the

flower beds.

Another day and another hug from MI.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Re: Digest Number 2950/Chip

[Guest guest]

Dear Donna,

How wonderful that you offered such a lovely thought! I showed Mr. B your

email and he immediately started talking...okay, garbling...about his precious

Lilies! Then he just looked at me and I simply said, " I know, I know, " and he

teared up. Thank you so much for that moment!

Much Love, hugs, and wonderful Peace sent to you, Stevie

P.S...tell me how much you would charge to send some Lillies and I will put

my order in!

Stevie in So. California

LO - Mr. B (Uncle) 82 yrs.

Lives in my home - 3 yrs.

DX Parkinson's 1993

DX LBD 2003 - probably has PDD

End stage meds: Hytrin, E.S Tylenol (Hallies have subsided) ...but have

started up again.

Was on: Sinemet, Seroguel, Elavil, Lasix, Hytrin, Roxinal, Aciphex,

Amitriptyline

Was given Ativan and Seroquel in NH for 5 days (Jan '06), hasn't been the

same since

Daily BP usually 68/52

Severe shoulder pain, hip pain, and shortness of breath.

Now taking Trilisate Liquid for pain - seems to be working

* * * * * * *

Stevie,

Tell Mr B that I'll dedicate my flower bed with all the Lily of the Valley I

have here in MI. I can't even contain it as they spread like wild fire, but

he already knows that. My grandma grew them and I loved the smell of them.

Now I mow half of them down when I mow the grass because they have spread beyond

the flower beds.

Another day and another hug from MI.

Donna R

Re: Re: Digest Number 2950/Chip

[Guest guest]

Lily of the Valley!...what a vivid memory of childhood. Thank you for the

reminder,

perhaps part of my preference for the heavier aromas of spring.

>

> Stevie,

>

> Tell Mr B that I'll dedicate my flower bed with all the Lily of the Valley I

have here in MI. I

can't even contain it as they spread like wild fire, but he already knows that.

My grandma

grew them and I loved the smell of them. Now I mow half of them down when I mow

the

grass because they have spread beyond the flower beds.

>

> Another day and another hug from MI.

>

> Donna R

>

> Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD

Newsletter. Just click on:

>

> http://www.lewybodydementia.org

>

>

> Re: Re: Digest Number 2950/Chip

>

>

>

>

>

[Guest guest]

Stevie,

I would be so happy to send some if I knew how to do it and have them live. I

can't imagine how those delicate flowers get mailed and couldn't imagine them

making it. When they are up, and flowering I bet I will try. It is still cold

here and it will take a while.

Donna R

Do you want to read more about Lewy Body? You can also read the Thistle, the

LBD Newsletter. Just click on:

http://www.lewybodydementia.org

Re: Re: Digest Number 2950/Chip