Re: Anyone Near Hamilton Ontario???

June 21, 2007

Diane -- welcome to the board. I'm sorry that you think that you may

have LBD and not even 40. I'm sure you want to know if it's a form of

dementia or if it's something treatable ASAP.

First, this link will lead you to a memory clinic in Canada:

http://alzheimersolutions.stores.yahoo.net/memdiscencan1.html

Another route is in our database:

http://health.groups.yahoo.com/group/LBDcaregivers/database

Go into the folder marked:

Medical Referrals from Caregivers

Referral Database

And in the files section:

http://health.groups.yahoo.com/group/LBDcaregivers/files/

Go into the folder marked:

LBD Caregiver Locations

List of caregivers from this board and their locations

There's a list of caregivers - maybe someone close to Hamilton.

You'll also see the Canadian LBD support group listed there.

And you should be able to get information re: specialists in dementia

at the Alzheimer's website in Canada:

http://www.alzheimer.ca/

And just so you know for sure -- you may want to read into a form of

treatable dementia - Normal pressure hydrocephalus (NPH)-

http://www.lifenph.com/

And;

http://www.alz-nic.org/treatable_dementia.html

Hope the above info helps!

June 21, 2007

diane,

hugs to you and welcome to our family, we have several of our memebers who are

lbders, patti, and chip , they write and help us help our loved ones i am in

florida and dont know anyone in canada to help you, but i wanted to write to you

and let you know that we are here for you and please be sure to go to the links

section of the group page to find a list of medications that have been found to

be detrimental as well as some that are good, there is a lot of great

information there that may be able to help you get diagnosed adn treated, i am

sending you long distance hugs and prayers to help you on thsi journey, please

let me know if i can do anything even listen, i am pretty good listener, either

thru the group or personally, my dad had lbd and passed away, and i believe

his uncle died of lbd as well but back then it was called a nervous breakdown

and now i am 47 and find myself with unexplained falls and frequently forgetting

my words and drawing blanks, i havent been to a neuro for a baseline

evaluatgion but it is on my list of things to do. hugs to you, sharon

---- malakaya123 wrote:

Hi, I will be 40 in Aug and have all the symptoms of LBD. I have been

ruled out for so many things, but no one will listen to me about LBD. I

have had REM Behavioural Disorder for about 15 years. Last summer I

started having memory problems .. then in the winter things progressed

with falling, etc. Now I get very confused and agitated. Hard finding

words. Brain overload. Hallucinating ....

I need to find a specialist that will listen to me .. does anyone know

of any near Hamilton Ontario. I need help. I feel like I'm going to

wake up and my mind is going to be totally gone. I want some help and

feel that they are going to find out I had LBD in my autopsy.

So very frustrated and no where to turn.

Diane

--

I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad

had a serious fall in 7/05 causing him to hav hip surgery .After that he

developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost

died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when

his blood pressure fluctuations started dropping without coming back up on

9/25/05,

may he rest in peace with his mom and dad,

a smile a day keeps the meanies away

June 21, 2007

Hi ,

My mom has LBD. We live in Mississauga. The only specialist that we are

seeing now is with the Trillium hospital in Mississauga. A geriatric team

consisting of a nurse, an occupational therapist and the specialist come to my

mom's apartment and assess her annually up til this time. We were referred by

our family doctor.

I don't know if you would want to come to Mississauga. When you say that no

one will listen to you, who have you spoken to. Mom was first assessed by her

family doctor.

Are you able to document specific incidents that would help you to explain

your symptoms to a doctor. Or if you find this too difficult, maybe someone who

is close to you could do it for you.

I do not know anyone specifically in Hamilton and to see a specialist I think

you have to be referred.

Take care and don't despair. Doris in Mississauga

malakaya123 wrote:

Hi, I will be 40 in Aug and have all the symptoms of LBD. I have been

ruled out for so many things, but no one will listen to me about LBD. I

have had REM Behavioural Disorder for about 15 years. Last summer I

started having memory problems .. then in the winter things progressed

with falling, etc. Now I get very confused and agitated. Hard finding

words. Brain overload. Hallucinating ....

I need to find a specialist that will listen to me .. does anyone know

of any near Hamilton Ontario. I need help. I feel like I'm going to

wake up and my mind is going to be totally gone. I want some help and

feel that they are going to find out I had LBD in my autopsy.

So very frustrated and no where to turn.

Diane

June 21, 2007

Hi Diane,

I am so sorry to hear of your problems and concerns about your health. I live

in Oakville,

20 min, away, but am sorry I cannot recommend any doctors to you. My mother

lived in

Kitchener, was diagnosed and treated by her NH doctor on admission, not her

neurologist

I had such esteem for. I know Doris in Mississauga is happy with her mother's

care, and

then we have our Toronto caregivers. I know we have at least one member here

from

Hamilton, but have not heard from her in a long time. Hopefully she will see

this and

respond. You are way too young to be experiencing these symptoms. Let's hope

it is

something else and more treatable. Please keep in touch. You would think at

MacMaster

there would be someone you could turn to!

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> Hi, I will be 40 in Aug and have all the symptoms of LBD. I have been

> ruled out for so many things, but no one will listen to me about LBD. I

> have had REM Behavioural Disorder for about 15 years. Last summer I

> started having memory problems .. then in the winter things progressed

> with falling, etc. Now I get very confused and agitated. Hard finding

> words. Brain overload. Hallucinating ....

>

> I need to find a specialist that will listen to me .. does anyone know

> of any near Hamilton Ontario. I need help. I feel like I'm going to

> wake up and my mind is going to be totally gone. I want some help and

> feel that they are going to find out I had LBD in my autopsy.

>

> So very frustrated and no where to turn.

>

> Diane

>

June 22, 2007

Hi Donna,

I am going to be seeing my sleep specialist, but he doesn't know much

about LBD (he told me himself). I am not a caregiver, but live alone. I

sleep too much as I'm tired most of the time. My sleep disorder,

according to Mayo Clinic tests (can't think of proper word) has found

that 2/3 of people with my sleep disorder get LBD. The problem is that

people who get this sleep disorder are usually in their 60's .. i was

diagnosed in my 20's.

I hope I do not have LBD, but I researched it and I have all the

symptoms of it and my mind is going and I want a good specialist now

because I'm afraid I'm going to wake up not knowing anyone or just be

totally confused all the time and won't know what to do.

Diane

June 22, 2007

Diane, I've never heard of a SPECT scan but did have a friend who paid for a

private PET

scan out of Trillium I believe in Mississaugau. It cost between $1000 and

$2000. If you

want to go that route and your doctor doesn't know how to refer, let me know and

I will

get the information .

, Oakville Ont.

Mother, age 92, died Aug. 12/06 after 13 year decline from PDD

>

> Hi Doris,

>

> Thank you for writing. I can get to Mississauga (Disability will pay

> for me to get there). The problem is that I'm not elderly. I have an

> old friend who has a sister who was diagnosed with LBD, but her

> specialist is geriatric. I don't know if they will take me. My doctor

> will send me to whoever I ask for. She is good that way. She just

> thinks because of my age I don't have it. I had a neurologist in

> Hamilton and she just blew me off the other day and wouldn't listen

> to me.

>

> I have been documenting all my symptoms over the time it has all been

> happening on the computer and every time I go to dr I show her.

>

> It's just everything points to LBD. At the beginning when things

> started happening, there was a news report about a link between REM

> Behavioural Disorder (sleep disorder) and LBD. I printed it off the

> Mayo Clinic Web Site and showed my doctor. But her attitude that it

> would be rare for me to have it .. well year later and I'm so down

> hill. I've had the sleep disorder for about 15 years and it's rare

> for me to have it at my age period.

>

> Can you get PET or SPECT Scans in Ontario? What kind of psychological

> eval. should I have? Do you know?

>

> I'm just really scared because I feel I'm losing my mind and one day

> I'll be 'gone' .. just want help now. Very frustrated.

>

> Diane

>

June 22, 2007

That would certainly be scary. And do you mean you were dx'ed with LBD in your

20's or sleep disorder then? I would feel same as you do and I would have to

get all other stuff ruled out. What does your MD think the problem is about? I

would certainly contribute loss of some memory on lack of sleep. I and others I

know who didn't sleep well as they were up all night with their LO, have some

of the same loss of memory. I hope some of the help others have given you will

be helpful in finding an MD to help. I don't think it is a problem going to a

geriatric MD and I can't believe they won't see you. They at least should know

about the disease.

Hugs,