Re: Anita/How to get initial treatment?

[Guest guest]

Thanks to everyone for their support and suggestions. We are currently

interviewing neurologists and will move forward once we have found a Dr.

Until then we just keep Mom as content and comfortable as possible.

Thanks again to all,

Anita

On Wed, Jul 16, 2008 at 12:49 AM, Janet Colello

wrote:

> Hi Anita,

> Welcome, I am glad you found us. You will find answers here and find that

> you can relate to others with similar situations as you, as you have

> noticed. If you can get your LO to a University Medical School, they usually

> do a great job on diagnosing or if you are anywhere near a Mayo Clinc. What

> state do you live in? Actually, , our webmaster, is putting a list

> of doctors together that are knowledgable in LBD across the nation.

> I am not sure if it is completed yet. As to how you will lure your LO out

> of the house, I don't know. When I have had to bring my husband to the

> doctor I can lure him out to the car by saying we are going for ice cream.

> And then after the doctor visit we go for ice cream. But you say food does

> not get your LO out of the house. Most of the time my husband will cooperate

> to get into the car, but there have been two times where he would not budge

> and I called a " Transport Ambulance " to pick him up and take him to the

> doctor. You will have to pay out of pocket for the " Transport Ambulance " It

> is about $80.00 for my husband to ride it. At the time I used the

> transportation it was worth the money to get him to the doctor. I follow in

> the car, because when he is done at the doctors he will get in the car to go

> home. A " Transport Ambulance " is not an Emergency Ambulance. They transport

> people from nursing homes to doctors or from your home to a doctor. My

> husband has been argumentive when the paramedics arrived, but they have a

> kind and gentle way of getting him on the gurney and into the ambulance and

> taking him, so that is my only contribution as to how to get your LO to the

> doctor for treatment. You might want this if all else fails. I like Donna's

> suggestion. It was not traumatic for my husband to go by " Transport

> Ambulance " but for another it may be.

> I am not sure if 's doctor list is completed, but we do have this

> list that caregivers have put together of knowledgable doctors in LBD and

> you might find one in your area.

>

>

http://health.groups.yahoo.com/group/LBDcaregivers/database?method=reportRows & tb\

l=2

> Good Luck, I hope you find your answer...................Jan

>

> How to get initial treatment?

>

> First let me thank the group for providing a caring and informative forum

> to

> folks living with LBD.

>

> My question to the group is how do you get a LO in for initial treatment?

>

> My LO believes that she is perfectly fine and that the rest of the family

> has severe difficulties. Our LO is experiencing memory problems, gate

> problems, delusions, oratory hallucinations, confusions, tremors and the PD

> stare. Levels of cognition rise and fall from day to day but are not

> rising

> to levels of past capabilities.

>

> My husband and I have consulted her Dr. with no assistance. We have

> consulted our LO and this simply aggravates our LO and causes an increase

> in

> symptoms.

>

> For a brief history we believe that our LO began demonstrating symptoms,

> which were mistaken for other things at the time, approximately six years

> ago after loosing her spouse. We noticed small things like inability to

> write checks, some isolation, unwillingness to perform simple household

> tasks and forgetfulness. We chalked these things up to stress, grief,

> normal aging and laziness.

>

> Approximately 9 months ago our LO's Dr. out of the blue told her she had

> Parkinson's and that if she was not treated immediately she would suffer a

> horrific death. This of course caused great concern and upset to the whole

> family. We met with a neurologist for treatment of Parkinson's. The

> neurologist did some simple motor skills test in his office and pronounced

> that our LO did not have Parkinson's but benign tremors and not to worry.

> Our LO was concerned about the tremors and her appearance so the

> neurologist

> prescribed mysoline. After approximately 1 month on this drug our LO began

> to show severe short term memory problems and complained of vivid dreams,

> saying that she could not tell if she was dreaming or if what was happening

> was real. She also began the slack faced vacant staring for hours. We

> took her back to her primary Dr. who stopped the mysoline. Unfortunately,

> the downturn has no stopped.

>

> After an incident where our LO became violent we sought help through her

> Dr.

> the internet and counselors.

>

> Her Dr. is a person we feel should not be practicing medicine any longer

> himself but for the time being our LO is adamant that he is her Dr. and the

> only Dr. she will see when she needs a Dr. While reading on the internet

> the symptoms and LBD and our LO just kept popping out at us over and over

> again. We are not Dr. and feel it is very important that our LO have a

> complete exam to determine a course of treatment.

>

> Our problem is she has completely isolated herself and refuses to leave the

> house except to check the mail and for the occasional brief walk in the

> neighborhood. She will not go to shop, eat, movie, or to visit family let

> alone go to the Dr. At this point it would require that we physically

> force

> her to go to a Dr. and I think that is going to cause a GREAT deal of

> stress

> to an already stressful situation. No good for anyone.

>

> Any suggestions would be greatly appreciated.

>

> Thanks to you all,

>

> Anita

>

>

[Guest guest]

Dear Anita,

Glad to hear you are searching for a good MD. Hopefully, as I mentioned last

week, you'll find one who knows LBD. It's a neuro disease, for sure, but sadly

not all docs " get " it. Please keep us posted, and we're keeping your mom and all

of you in our prayers.

 

Lin

> Hi Anita,

> Welcome, I am glad you found us. You will find answers here and find that

> you can relate to others with similar situations as you, as you have

> noticed. If you can get your LO to a University Medical School, they

usually

> do a great job on diagnosing or if you are anywhere near a Mayo Clinc.

What

> state do you live in? Actually, , our webmaster, is putting a list

> of doctors together that are knowledgable in LBD across the nation.

> I am not sure if it is completed yet. As to how you will lure your LO out

> of the house, I don't know. When I have had to bring my husband to the

> doctor I can lure him out to the car by saying we are going for ice cream.

> And then after the doctor visit we go for ice cream. But you say food does

> not get your LO out of the house. Most of the time my husband will

cooperate

> to get into the car, but there have been two times where he would not

budge

> and I called a " Transport Ambulance " to pick him up and take him

to the

> doctor. You will have to pay out of pocket for the " Transport

Ambulance " It

> is about $80.00 for my husband to ride it. At the time I used the

> transportation it was worth the money to get him to the doctor. I follow

in

> the car, because when he is done at the doctors he will get in the car to

go

> home. A " Transport Ambulance " is not an Emergency Ambulance.

They transport

> people from nursing homes to doctors or from your home to a doctor. My

> husband has been argumentive when the paramedics arrived, but they have a

> kind and gentle way of getting him on the gurney and into the ambulance

and

> taking him, so that is my only contribution as to how to get your LO to

the

> doctor for treatment. You might want this if all else fails. I like

Donna's

> suggestion. It was not traumatic for my husband to go by " Transport

> Ambulance " but for another it may be.

> I am not sure if 's doctor list is completed, but we do have

this

> list that caregivers have put together of knowledgable doctors in LBD and

> you might find one in your area.

>

>

http://health.groups.yahoo.com/group/LBDcaregivers/database?method=reportRows & tb\

l=2

> Good Luck, I hope you find your answer...................Jan

>

> How to get initial treatment?

>

> First let me thank the group for providing a caring and informative forum

> to

> folks living with LBD.

>

> My question to the group is how do you get a LO in for initial treatment?

>

> My LO believes that she is perfectly fine and that the rest of the family

> has severe difficulties. Our LO is experiencing memory problems, gate

> problems, delusions, oratory hallucinations, confusions, tremors and the

PD

> stare. Levels of cognition rise and fall from day to day but are not

> rising

> to levels of past capabilities.

>

> My husband and I have consulted her Dr. with no assistance. We have

> consulted our LO and this simply aggravates our LO and causes an increase

> in

> symptoms.

>

> For a brief history we believe that our LO began demonstrating symptoms,

> which were mistaken for other things at the time, approximately six years

> ago after loosing her spouse. We noticed small things like inability to

> write checks, some isolation, unwillingness to perform simple household

> tasks and forgetfulness. We chalked these things up to stress, grief,

> normal aging and laziness.

>

> Approximately 9 months ago our LO's Dr. out of the blue told her she

had

> Parkinson's and that if she was not treated immediately she would

suffer a

> horrific death. This of course caused great concern and upset to the

whole

> family. We met with a neurologist for treatment of Parkinson's. The

> neurologist did some simple motor skills test in his office and pronounced

> that our LO did not have Parkinson's but benign tremors and not to

worry.

> Our LO was concerned about the tremors and her appearance so the

> neurologist

> prescribed mysoline. After approximately 1 month on this drug our LO

began

> to show severe short term memory problems and complained of vivid dreams,

> saying that she could not tell if she was dreaming or if what was

happening

> was real. She also began the slack faced vacant staring for hours. We

> took her back to her primary Dr. who stopped the mysoline. Unfortunately,

> the downturn has no stopped.

>

> After an incident where our LO became violent we sought help through her

> Dr.

> the internet and counselors.

>

> Her Dr. is a person we feel should not be practicing medicine any longer

> himself but for the time being our LO is adamant that he is her Dr. and

the

> only Dr. she will see when she needs a Dr. While reading on the internet

> the symptoms and LBD and our LO just kept popping out at us over and over

> again. We are not Dr. and feel it is very important that our LO have a

> complete exam to determine a course of treatment.

>

> Our problem is she has completely isolated herself and refuses to leave

the

> house except to check the mail and for the occasional brief walk in the

> neighborhood. She will not go to shop, eat, movie, or to visit family let

> alone go to the Dr. At this point it would require that we physically

> force

> her to go to a Dr. and I think that is going to cause a GREAT deal of

> stress

> to an already stressful situation. No good for anyone.

>

> Any suggestions would be greatly appreciated.

>

> Thanks to you all,

>

> Anita

>

>