nobordersforparkinsondisease : Messages : 4399-4425 of 4425

Look at the prescription on his current glasses.  If there is no astigmatism,
buy 3 or 4 pair from Walmart that are stronger and see if they help.  If not,
it's easy to return them and try others.  You could do it with him waiting in
the car outside but you should see how he does watching TV or if he is using a
computer, how he does.  It might take a little more effort, but it should
work!  Smart answer, Mary!




________________________________
From: Mary Cooper <meemeeskid@...>
To: nobordersforparkinsondisease@yahoogroups.com
Sent: Thu, November 19, 2009 7:36:35 PM
Subject: Re: [No borders for Parkinsondisease] Eyeglasses?

 
if he is only near-sighted and does not have astigmatism, generic reading
glasses may help...ask your optomitrist

--- On Tue, 11/17/09, paxtonfan@aol. com <paxtonfan@aol. com> wrote:

From: paxtonfan@aol. com <paxtonfan@aol. com>
Subject: [No borders for Parkinsondisease] Eyeglasses?
To: nobordersforparkins ondisease@ yahoogroups. com
Date: Tuesday, November 17, 2009, 5:02 PM

 

My dad has advanced PD and my mom said that there is no way he can go to
an optometrist. He needs new glasses and he really will need a new
prescription.

Any advice?

Thank you,
Erin

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]







[Non-text portions of this message have been removed]

#4423

From: Mary Cooper <meemeeskid@...>
Date: Fri Nov 20, 2009 12:36 am
Subject: Re: [No borders for Parkinsondisease] Eyeglasses?

meemeeskid

Offline

if he is only near-sighted and does not have astigmatism, generic reading
glasses may help...ask your optomitrist

--- On Tue, 11/17/09, paxtonfan@... <paxtonfan@...> wrote:

From: paxtonfan@... <paxtonfan@...>
Subject: [No borders for Parkinsondisease] Eyeglasses?
To: nobordersforparkinsondisease@yahoogroups.com
Date: Tuesday, November 17, 2009, 5:02 PM

My dad has advanced PD and my mom said that there is no way he can go to
an optometrist. He needs new glasses and he really will need a new
prescription.

Any advice?

Thank you,
Erin

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]

#4422

From: tina_semal
Date: Wed Nov 18, 2009 9:09 am
Subject: Re: Eyeglasses?

tina_semal

Offline

Of course it would be better that an optometrist comes to your home .
Perhaps if you know what kind of glasses he need to, you will find perhaps an
answer on http://www.glasses4you.org
Friendly
Tina

--- In nobordersforparkinsondisease@yahoogroups.com, paxtonfan@... wrote:
>
> My dad has advanced PD and my mom said that there is no way he can go  to
> an optometrist.  He needs new glasses and he really will need a new
> prescription.
>
> Any advice?
>
> Thank you,
> Erin
>
>
>
>
> [Non-text portions of this message have been removed]
>

#4421

From: tina_semal
Date: Wed Nov 18, 2009 8:55 am
Subject: Re: [No borders for Parkinsond] of Your Neurologist and Members of Your Care Team

tina_semal

Offline

Of course I remember you Mike. I saw you sended me alot of messages on yahoo. I
apologize for not having answer on them because I only saw them yesterday. In
the future contact me on my e-mail m_semal@... or by the way of the
board from noborders. As long as I can I will always be there for you and all
the others.
Friendly
Tina

--- In nobordersforparkinsondisease@yahoogroups.com, "Mike Murphy" <ab7gw@...>
wrote:
>
> Hi Tina
> This is Jack M Murphy. I think I signed up with the Group as Jack but I have
been going by my middle name (Mike)for  a long time. If someone called me Jack I
might not know who they were talking to.     :~)    Any way I sure appreciate
the messages that you send to the group. I have learned a lot about PD just by
reading what you send. I live in Casper, Wyoming and have been to the University
of Colorado about 2 years ago and to the Mayo Clinic in Rochester, MN a little
over a year ago.
>
> About  2 weeks ago I went to a Movement Disorder Specialist in Denver. I
received the best check up that I have ever had from him and his PA for
Parkinson's. They are also testing me for PSP becaue I failed the verticle
vision test and the memory pretty bad. I was signed up for a Webonare on
November 5th, the day we got home from Denver and I forgot that it was for PSP
and was being put on by the "Cure PSP" people. It was very informative and the
Doctor who was the main speaker was very positive about finding a medicine to
either stop the progression of PSP or cure it in 2010.
>
> Anyway the main purpose of his letter is to thank you for all the information
you have shared with the group  and to encourage you to continu.
>
> God Bless you Tina
> "Mike"
>
> From: tina_semal
>   To: nobordersforparkinsondisease@yahoogroups.com
>   Sent: Tuesday, November 17, 2009 5:47 AM
>   Subject: [No borders for Parkinsondisease] Role of Your Neurologist and
Members of Your Care Team
>
>
>
>   So you have been diagnosed with Parkinson's Disease (PD). There are so many
decisions you need to make while you adjust to the news. Among the most
important decisions you will need to attend to is the assembling of a team of
specialists who will manage your care over the course of the next few years.
While you can always change members of the team, putting some amount of thought
and planning into assembling the initial team will pay dividends for you down
the road if that team can rapidly and effectively address your early symptoms
and needs.
>
>   The following suggestions will help you to assemble the care team that is
best for you. I will also give you some pointers on how best to interact with
your care team.
>
>   Members of the Health Care Team
>   First who should make up your care team? At a minimum you will need:
>
>   .A primary care physician who looks after your day to day medical needs
>   .A neurologist who specializes in movement disorders
>   .A counselor or psychiatrist or psychologist who can help you manage
potential emotional and mental health problems is they arise
>   .Allied health professionals like physical therapists, occupational
therapists, sleep medicine specialists and so forth. Your neurologist should be
able to help you find the allied health professionals right for you.
>
>   All of these people will of course need to communicate to some extent with
one another but the key figure for management of your PD symptoms will be the
neurologist. So how do you find a neurologist who is right for you?
>
>   Choose a Neurologist Who Specializes in Movement Disorders
>   Your first task is to find a neurologist who specializes in movement
disorders (like Parkinson's). You need someone who is familiar with PD, who can
tell you what to anticipate and who can put you in touch with the best resources
and treatment options available. This neurologist will know when to start
medications and when to adjust the dosages of those medications to achieve
maximum benefit and so forth. So how do you find such a specialist?
>
>   First ask your primary care doctor for a referral to such a specialist. Your
primary care doctor will certainly be able to point you in the right direction.
>
>   You can also find a local support group for PD patients and ask those
individuals for recommendations on PD specialists. You can get information on
local support groups as well as local PD specialists from the local or regional
chapters of a national PD organization. (See the links to resources).
>
>   For example, you might call anyone of these organizations and ask for a list
of PD specialists in your area:
>
>   .National Parkinson's Foundation (NPF): 800-327-4545
>   .American Parkinson's Disease Association (APDA): 800-223-2732
>   .Parkinson's Action Network (PAN): 800-850-4726 or 202-638-4101
>   .Parkinson's Disease Foundation {PDF): 800- 457-6676
>
>   What to Look for in a Parkinson's Disease Neurologist
>   Here is a checklist of basic questions for your prospective neurologist:
>
>   .How long have you worked in the field? How many PD patients do you see a
year?
>   .Do you have special training in movement disorders? Are you Board
Certified?
>   .Who do I see when you are not available?
>   .What hospital do you use for treating patients?
>
>   Besides these basic questions, the most important way to choose the
neurologist you will work with is by listening to the treatment plan he puts
together for you. Does it make sense? Does he or she discuss it with you after
considering your personal needs, goals and symptoms? Does he mention that it
needs to be flexible and be re-evaluated over time? Does he try to integrate the
plan into your everyday life and needs?
>
>   You need to use your common sense when choosing a PD neurologist/specialist.
You cannot doctor yourself. You need to trust at some point that this highly
trained specialist knows what he or she is doing.
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

#4420

From: Victor Nj <victornj36@...>
Date: Wed Nov 18, 2009 2:03 am
Subject: Good News, water-soluble solution of Co-Q10

victornj36

Offline

http://www.canada.com/health/diet-fitness/Windsor+research+could+halt+advance+Pa\
rkinson/2032445/story.html

The relevant information is:
Use of water-soluble solution of Co-Q10 (no oil-based solution)

WINDSOR, Ont.. — Each time University of Windsor graduate student Katie
Facecchia
sees actor Michael J. Fox on television,
talking about his life-and-death battle with Parkinson's disease,
she "can't help but think — just hang on, there'll be something soon."
Facecchia is part of a team of researchers from the school's biochemistry
and psychology departments, led by Prof. Siyaram Pandey, who believe they
have made a research breakthrough that laboratory tests have proven halt
the advance of Parkinson's.
Pandey said the treatment is a water-soluble formulation of the natural
chemical compound — coenzyme Q10 — that stops further degeneration of
neurons
in the brains of lab rats.
The currently non-curable neurodegenerative disease is caused by the death
of brain cells that produce dopamine, a chemical that carries signals between
the nerves in the brain that control movement.
The "Co-Q10" compound cannot reverse the damage, cautioned Pandey, but he said
it can halt its progression..
"As the disease progresses, the neurons die at a faster rate," said Pandey,
"Usually, by the time it's diagnosed, 50 per cent of the neurons are gone.
The only treatment now is for the symptoms, but the dosage has to always
be increased, because the neurons continue to die. If we can protect those
neurons that are left over, it could lead to a normal life."
He said the research so far has "shown amazing results . . . the near-complete
protection of brain cells."
The findings have been published in the academic journal BMC Neuroscience,
and the team has begun collaborating with a pharmaceutical company based
in New Jersey, Zymes LLC.
Pandey said he hopes their research will proceed to clinical testing soon.
"We're still at the pre-clinical stage," he said. "But the results are
promising."
Pandey is quick to credit the breakthrough to University of Windsor doctoral
research student Mallika Somayajulu-Nitu, who wasn't available for an interview
because of illness.
The team's experiments involved injecting a group of 47 lab rats with paraquat,
a toxic herbicide once widely used as a roadside weed-killer and defoliant.
Previous research had shown a link between the chemical and an elevated risk
in humans for developing Parkinson's.
Some of the rats were given water, while others received a water-soluble
solution of Co-Q10, which is found in all cells and is a key component
in generating cellular energy.
The rats that didn't receive the Co-Q10 quickly showed considerable brain damage
and behavioural symptoms associated with Parkinson's. Those that got the
compound
showed no degeneration of brain cells or impairment of motor skills.
Pandey said the compound is not new. Research has been done by other
labs using Co-Q10 and has shown similarly promising results. But, in
those experiments, the compound was oil-based and not water-soluble,
necessitating much larger doses to achieve the same result. He said
the amount needed was so high, that to administer it to humans in effective
doses
"was just not possible."
The water-soluble compound, combined with vitamin E, was developed by
scientists at the National Research Council in Ottawa, including Pandey
and collaborator Marianna Sikorska. Pandey said it has proven effective in
much smaller doses, suggesting that in humans 350- to 700-milligram doses
could be sufficient.
It has been patented and licensed to Zymes for commercial development.
Pandey could not predict how long it may take to proceed to clinical testing,
adding that further research is needed. He said the research team at the
university began their work four years ago after receiving $225,000 from the
Canadian Institute of Health Research. He said the team is seeking a renewal
of the funding.





[Non-text portions of this message have been removed]

#4419

From: paxtonfan@...
Date: Tue Nov 17, 2009 5:02 pm
Subject: Eyeglasses?

puffielee

Offline

My dad has advanced PD and my mom said that there is no way he can go  to
an optometrist.  He needs new glasses and he really will need a new
prescription.

Any advice?

Thank you,
Erin




[Non-text portions of this message have been removed]

#4418

From: Mary Cooper <meemeeskid@...>
Date: Tue Nov 17, 2009 9:11 pm
Subject: Re: [No borders for Parkinsondisease] Re: [No borders for Parkinsond] of Your Neurologist and Members of Your Care Team

meemeeskid

Offline

dear mike,
keep your chin up and spirits high....i too was diagnosed with  psp in
2002...the dr very coldly told me i had 3-5 years until i would needd a
wheelchair and 7-10 years before a major system shutdown would cause my death,
probably while i slept...i quickly changed neurologists...i have trouble in
crowds if jostled, but otherwise am still moving under my own power...gardening
half an acre plus flowerbeds....carrying a camp chair and lots of water for
breaks...every evening is christmas eve as i excitedly await morning to see what
i can get into...don't let anyone fill your head with doom and gloom as they can
be self-fulfilling propheses
becky

--- On Tue, 11/17/09, Mike Murphy <ab7gw@...> wrote:


From: Mike Murphy <ab7gw@...>
Subject: [No borders for Parkinsondisease] Re: [No borders for Parkinsond] of
Your Neurologist and Members of Your Care Team
To: nobordersforparkinsondisease@yahoogroups.com
Date: Tuesday, November 17, 2009, 3:49 PM


 



Hi Tina
This is Jack M Murphy. I think I signed up with the Group as Jack but I have
been going by my middle name (Mike)for a long time. If someone called me Jack I
might not know who they were talking to. :~) Any way I sure appreciate the
messages that you send to the group. I have learned a lot about PD just by
reading what you send. I live in Casper, Wyoming and have been to the University
of Colorado about 2 years ago and to the Mayo Clinic in Rochester, MN a little
over a year ago.

About 2 weeks ago I went to a Movement Disorder Specialist in Denver. I received
the best check up that I have ever had from him and his PA for Parkinson's. They
are also testing me for PSP becaue I failed the verticle vision test and the
memory pretty bad. I was signed up for a Webonare on November 5th, the day we
got home from Denver and I forgot that it was for PSP and was being put on by
the "Cure PSP" people. It was very informative and the Doctor who was the main
speaker was very positive about finding a medicine to either stop the
progression of PSP or cure it in 2010.

Anyway the main purpose of his letter is to thank you for all the information
you have shared with the group and to encourage you to continu.

God Bless you Tina
"Mike"

From: tina_semal
To: nobordersforparkins ondisease@ yahoogroups. com
Sent: Tuesday, November 17, 2009 5:47 AM
Subject: [No borders for Parkinsondisease] Role of Your Neurologist and Members
of Your Care Team

So you have been diagnosed with Parkinson's Disease (PD). There are so many
decisions you need to make while you adjust to the news. Among the most
important decisions you will need to attend to is the assembling of a team of
specialists who will manage your care over the course of the next few years.
While you can always change members of the team, putting some amount of thought
and planning into assembling the initial team will pay dividends for you down
the road if that team can rapidly and effectively address your early symptoms
and needs.

The following suggestions will help you to assemble the care team that is best
for you. I will also give you some pointers on how best to interact with your
care team.

Members of the Health Care Team
First who should make up your care team? At a minimum you will need:

.A primary care physician who looks after your day to day medical needs
.A neurologist who specializes in movement disorders
.A counselor or psychiatrist or psychologist who can help you manage potential
emotional and mental health problems is they arise
.Allied health professionals like physical therapists, occupational therapists,
sleep medicine specialists and so forth. Your neurologist should be able to help
you find the allied health professionals right for you.

All of these people will of course need to communicate to some extent with one
another but the key figure for management of your PD symptoms will be the
neurologist. So how do you find a neurologist who is right for you?

Choose a Neurologist Who Specializes in Movement Disorders
Your first task is to find a neurologist who specializes in movement disorders
(like Parkinson's) . You need someone who is familiar with PD, who can tell you
what to anticipate and who can put you in touch with the best resources and
treatment options available. This neurologist will know when to start
medications and when to adjust the dosages of those medications to achieve
maximum benefit and so forth. So how do you find such a specialist?

First ask your primary care doctor for a referral to such a specialist. Your
primary care doctor will certainly be able to point you in the right direction.

You can also find a local support group for PD patients and ask those
individuals for recommendations on PD specialists. You can get information on
local support groups as well as local PD specialists from the local or regional
chapters of a national PD organization. (See the links to resources).

For example, you might call anyone of these organizations and ask for a list of
PD specialists in your area:

.National Parkinson's Foundation (NPF): 800-327-4545
.American Parkinson's Disease Association (APDA): 800-223-2732
.Parkinson's Action Network (PAN): 800-850-4726 or 202-638-4101
.Parkinson's Disease Foundation {PDF): 800- 457-6676

What to Look for in a Parkinson's Disease Neurologist
Here is a checklist of basic questions for your prospective neurologist:

.How long have you worked in the field? How many PD patients do you see a year?
.Do you have special training in movement disorders? Are you Board Certified?
.Who do I see when you are not available?
.What hospital do you use for treating patients?

Besides these basic questions, the most important way to choose the neurologist
you will work with is by listening to the treatment plan he puts together for
you. Does it make sense? Does he or she discuss it with you after considering
your personal needs, goals and symptoms? Does he mention that it needs to be
flexible and be re-evaluated over time? Does he try to integrate the plan into
your everyday life and needs?

You need to use your common sense when choosing a PD neurologist/ specialist.
You cannot doctor yourself. You need to trust at some point that this highly
trained specialist knows what he or she is doing.

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

#4417

From: "Mike Murphy" <ab7gw@...>
Date: Tue Nov 17, 2009 8:49 pm
Subject: Re: [No borders for Parkinsond] of Your Neurologist and Members of Your Care Team

ab7gw

Offline

Hi Tina
This is Jack M Murphy. I think I signed up with the Group as Jack but I have
been going by my middle name (Mike)for  a long time. If someone called me Jack I
might not know who they were talking to.     :~)    Any way I sure appreciate
the messages that you send to the group. I have learned a lot about PD just by
reading what you send. I live in Casper, Wyoming and have been to the University
of Colorado about 2 years ago and to the Mayo Clinic in Rochester, MN a little
over a year ago.

About  2 weeks ago I went to a Movement Disorder Specialist in Denver. I
received the best check up that I have ever had from him and his PA for
Parkinson's. They are also testing me for PSP becaue I failed the verticle
vision test and the memory pretty bad. I was signed up for a Webonare on
November 5th, the day we got home from Denver and I forgot that it was for PSP
and was being put on by the "Cure PSP" people. It was very informative and the
Doctor who was the main speaker was very positive about finding a medicine to
either stop the progression of PSP or cure it in 2010.

Anyway the main purpose of his letter is to thank you for all the information
you have shared with the group  and to encourage you to continu.

God Bless you Tina
"Mike"

From: tina_semal
   To: nobordersforparkinsondisease@yahoogroups.com
   Sent: Tuesday, November 17, 2009 5:47 AM
   Subject: [No borders for Parkinsondisease] Role of Your Neurologist and
Members of Your Care Team



   So you have been diagnosed with Parkinson's Disease (PD). There are so many
decisions you need to make while you adjust to the news. Among the most
important decisions you will need to attend to is the assembling of a team of
specialists who will manage your care over the course of the next few years.
While you can always change members of the team, putting some amount of thought
and planning into assembling the initial team will pay dividends for you down
the road if that team can rapidly and effectively address your early symptoms
and needs.

   The following suggestions will help you to assemble the care team that is best
for you. I will also give you some pointers on how best to interact with your
care team.

   Members of the Health Care Team
   First who should make up your care team? At a minimum you will need:

   .A primary care physician who looks after your day to day medical needs
   .A neurologist who specializes in movement disorders
   .A counselor or psychiatrist or psychologist who can help you manage potential
emotional and mental health problems is they arise
   .Allied health professionals like physical therapists, occupational
therapists, sleep medicine specialists and so forth. Your neurologist should be
able to help you find the allied health professionals right for you.

   All of these people will of course need to communicate to some extent with one
another but the key figure for management of your PD symptoms will be the
neurologist. So how do you find a neurologist who is right for you?

   Choose a Neurologist Who Specializes in Movement Disorders
   Your first task is to find a neurologist who specializes in movement disorders
(like Parkinson's). You need someone who is familiar with PD, who can tell you
what to anticipate and who can put you in touch with the best resources and
treatment options available. This neurologist will know when to start
medications and when to adjust the dosages of those medications to achieve
maximum benefit and so forth. So how do you find such a specialist?

   First ask your primary care doctor for a referral to such a specialist. Your
primary care doctor will certainly be able to point you in the right direction.

   You can also find a local support group for PD patients and ask those
individuals for recommendations on PD specialists. You can get information on
local support groups as well as local PD specialists from the local or regional
chapters of a national PD organization. (See the links to resources).

   For example, you might call anyone of these organizations and ask for a list
of PD specialists in your area:

   .National Parkinson's Foundation (NPF): 800-327-4545
   .American Parkinson's Disease Association (APDA): 800-223-2732
   .Parkinson's Action Network (PAN): 800-850-4726 or 202-638-4101
   .Parkinson's Disease Foundation {PDF): 800- 457-6676

   What to Look for in a Parkinson's Disease Neurologist
   Here is a checklist of basic questions for your prospective neurologist:

   .How long have you worked in the field? How many PD patients do you see a
year?
   .Do you have special training in movement disorders? Are you Board Certified?
   .Who do I see when you are not available?
   .What hospital do you use for treating patients?

   Besides these basic questions, the most important way to choose the
neurologist you will work with is by listening to the treatment plan he puts
together for you. Does it make sense? Does he or she discuss it with you after
considering your personal needs, goals and symptoms? Does he mention that it
needs to be flexible and be re-evaluated over time? Does he try to integrate the
plan into your everyday life and needs?

   You need to use your common sense when choosing a PD neurologist/specialist.
You cannot doctor yourself. You need to trust at some point that this highly
trained specialist knows what he or she is doing.





[Non-text portions of this message have been removed]

#4416

From: tina_semal
Date: Tue Nov 17, 2009 12:50 pm
Subject: How to Cope with Sexual Side Effects of Parkinson's Disease

tina_semal

Offline

Along with the general sexual symptoms Parkinson's disease can cause, it can
also effect men and women differently. In addition, medication can cause side
effects that affect sex drive (some drugs increase sex drive while others
decrease it). Let's take a look at these issues and how to cope with them:
Parkinson's Effect on Men and Sex Drive
Men with Parkinson's disease may experience difficulty obtaining or maintaining
an erection during sexual intercourse. Abnormalities in the function of the
autonomic system may be one contributing cause to erectile dysfunction in men
with PD. Erectile dysfunction in Parkinson's disease can also be directly
related to the low dopamine levels of the brain. Other common disorders related
to aging like diabetes, hypertension, and high cholesterol can also contribute
to erectile dysfunction. Sidenafil can sometimes help with erectile dysfunction.
Testosterone replacement therapy may also help with both erections and desire.

Women and PD
Not much is known about PD's impact on women, but what is known is that women
with Parkinson's disease often experience a decline in sexual desire and a
reduced ability to experience orgasm during sex.

Sex can be uncomfortable because of a lack of lubrication and desire. For woman
with PD who have experienced menopause, the decline in sexual interest may be
due to both menopause and PD. Hormone replacement therapy may help women. An
added side benefit is that such therapy sometimes helps to keeps bones strong
and flexible. Never, however, take any hormonal supplements without consulting
with your doctor first.

Sexual Effects of Parkinson's Medications
Sometimes persons with PD can experience a dramatic increase in sexual interest
and activity. When dosages on some PD medications are too high it sometimes
becomes more difficult (for some people) to control their impulses. These
"impulse control disorders" may include too much spending, too much gambling and
too much interest in sexual activity. It is very important for persons with PD
to be aware that impulse control problems can sometimes occur when taking PD
medications. At first signs of these issues. you should have your doctor adjust
your medications. You do not want to spend your family's saving on impulsive
spending sprees, gambling junkets or sexual improprieties. The medications most
often related to impulse control problems are the dopamine agonists rather than
levodopa per se. The good news is that impulse control problems appear to be
'dose-dependent," meaning that the unwanted behaviors go away when you reduce
the dose.

Ways to Circumvent What PD Throws at You
Many questions crowd into the consciousness of an individual who has been
diagnosed with PD � among them are questions about sex and your partner. Can I
adequately satisfy the needs of this person I love? If I cannot correct this
problem what will happen to our relationship?

Instead of worrying about these issues here is what you can do:

�Identify root causes of the problem -- if it is related to depression treat the
depression, if it is related to a reduction in sex hormones, ask your doctor
about hormone replacement therapy and so forth.
�Sometimes the root problem is the dose of PD medication you are on. Consult
with your PD doctor about adjusting the dose.
�Engage in vigorous exercise whenever you can as it will improve physical
stamina and mobility. It will also enhance hormone levels in some people.
�Participate in a series of physical therapy treatments as these improve
mobility.
�Cognitive-behavioral therapy and psychotherapy may help to talk though worries,
fears and feelings of loss. Getting beyond these negative feeling may allow you
to more fully enjoy the moment with your partner.
�You and your partner might consider taking a massage class together to find new
ways to maintain intimacy while you are struggling with sexual dysfunction.
�Talking with your partner about what you are going through is usually a good
idea as well.

Reply | Forward | Messages in this Topic (2)

#4415

From: tina_semal
Date: Tue Nov 17, 2009 12:49 pm
Subject: Parkinson's Disease Can Cause Awkward Situations

tina_semal

Offline

Parkinson's disease involves a lot of symptoms that can be misunderstood or
misinterpreted by others. If you have PD, you do not need me to tell you that
others may think you are:


�staring,
�trembling,
�mumbling,
�drooling and so on.

Add to all this that


�you move slower others and that
�your signature ain't what it used to be�

�then its not so surprising that potentially awkward social situations are a
daily challenge for PD patients. Here are some tips on how to handle them.

"Why are you staring at me?"
Many PD patients have been accused of staring. But PD involves a loss of
spontaneous facial expressions (which depend on dopamine) and a reduction in the
rate of blinking of the eyes. Doctors call this set of symptoms `masked facies.'
The loss of control of the face muscles also results in mumbling and drooling
and loss of emotional expression.

If someone asks you about `staring' or mumbling or drooling the best response
may be the truth: "I have Parkinson's Disease�I lose control of some of my
facial muscles." OR:

"You're mumbling, I cannot understand what you are saying."
"I have Parkinson's Disease�I lose control of some of my speech muscles."

"You're drooling."
"I have Parkinson's Disease�I lose control of some of my mouth and face
muscles."

A similar response will work for many of the other symptoms that are often
misunderstood.

"You're trembling!"
Tremor is one of the earliest symptoms of PD and is due to loss of dopamine in
movement centers of the brain. Try the usual reply: "I have Parkinson's
Disease�I lose control of some of my muscles."

Consider the Following Scenario:
You need to go to the supermarket to pick up a few staples.

At the supermarket you are slow in pushing the cart down the aisle. People are
lined-up in back of you and want you to move faster. But you can't go any
faster. Someone says "Excuse me." What should you say?

At the checkout counter you slowly and shakily put each item on the belt. People
again are lined up in back of you staring angrily. What should you say if
anything?

It comes time to pay for the groceries and you realize you have no cash on you!
So you need to pay with credit card. The cashier will require your signature.
She looks at your signature and says "It's too small, I cannot read your
writing" What should you say?

Tips For Handling Awkward Situations
The trip to the grocery store scenario yielded plenty of awkward social moments
for people with PD. While you are NOT obliged to explain yourself to every
impatient or inconsiderate person who crosses your path, sometimes a quick
explanation will ease your way a bit.


�In most situations a simple one sentence explanation will suffice: "I have
Parkinson's Disease�I lose control of some of my muscles."

Whether or not that one sentence explanation will handle every situation you
face, you can use other ways to handle awkward moments:


�Cultivate a sense of humor about the situation. People are funny when they fret
about the small stuff like waiting in a line where lines abound (as in a
supermarket!)
�Cultivate the virtue of patience with yourself and others. Accept yourself and
the challenges you face.
�Turn awkward social situations around so that they benefit you whenever you
can. Your simple explanation of your condition will often spark a conversation
with a stranger who, surprisingly enough, turns out to be understanding and even
helpful.

Reply | Forward | Messages in this Topic (2)

#4414

From: tina_semal
Date: Tue Nov 17, 2009 12:47 pm
Subject: Role of Your Neurologist and Members of Your Care Team

tina_semal

Offline

So you have been diagnosed with Parkinson's Disease (PD). There are so many
decisions you need to make while you adjust to the news. Among the most
important decisions you will need to attend to is the assembling of a team of
specialists who will manage your care over the course of the next few years.
While you can always change members of the team, putting some amount of thought
and planning into assembling the initial team will pay dividends for you down
the road if that team can rapidly and effectively address your early symptoms
and needs.

The following suggestions will help you to assemble the care team that is best
for you. I will also give you some pointers on how best to interact with your
care team.

Members of the Health Care Team
First who should make up your care team? At a minimum you will need:

�A primary care physician who looks after your day to day medical needs
�A neurologist who specializes in movement disorders
�A counselor or psychiatrist or psychologist who can help you manage potential
emotional and mental health problems is they arise
�Allied health professionals like physical therapists, occupational therapists,
sleep medicine specialists and so forth. Your neurologist should be able to help
you find the allied health professionals right for you.

All of these people will of course need to communicate to some extent with one
another but the key figure for management of your PD symptoms will be the
neurologist. So how do you find a neurologist who is right for you?

Choose a Neurologist Who Specializes in Movement Disorders
Your first task is to find a neurologist who specializes in movement disorders
(like Parkinson's). You need someone who is familiar with PD, who can tell you
what to anticipate and who can put you in touch with the best resources and
treatment options available. This neurologist will know when to start
medications and when to adjust the dosages of those medications to achieve
maximum benefit and so forth. So how do you find such a specialist?

First ask your primary care doctor for a referral to such a specialist. Your
primary care doctor will certainly be able to point you in the right direction.

You can also find a local support group for PD patients and ask those
individuals for recommendations on PD specialists. You can get information on
local support groups as well as local PD specialists from the local or regional
chapters of a national PD organization. (See the links to resources).

For example, you might call anyone of these organizations and ask for a list of
PD specialists in your area:

�National Parkinson's Foundation (NPF): 800-327-4545
�American Parkinson's Disease Association (APDA): 800-223-2732
�Parkinson's Action Network (PAN): 800-850-4726 or 202-638-4101
�Parkinson's Disease Foundation {PDF): 800- 457-6676

What to Look for in a Parkinson's Disease Neurologist
Here is a checklist of basic questions for your prospective neurologist:

�How long have you worked in the field? How many PD patients do you see a year?
�Do you have special training in movement disorders? Are you Board Certified?
�Who do I see when you are not available?
�What hospital do you use for treating patients?

Besides these basic questions, the most important way to choose the neurologist
you will work with is by listening to the treatment plan he puts together for
you. Does it make sense? Does he or she discuss it with you after considering
your personal needs, goals and symptoms? Does he mention that it needs to be
flexible and be re-evaluated over time? Does he try to integrate the plan into
your everyday life and needs?

You need to use your common sense when choosing a PD neurologist/specialist. You
cannot doctor yourself. You need to trust at some point that this highly trained
specialist knows what he or she is doing.

#4412

From: tina_semal
Date: Tue Nov 17, 2009 12:45 pm
Subject: Dressing Well Despite Parkinson's Disease

tina_semal

Offline

Living with parkinson'sgetting dressed
Parkinson's Disease can make it a little more difficult to dress well each day.
The rigidity, cramps and tremors can make buttoning a shirt an adventure and
putting on a tie a veritable enigma wrapped in a mystery. But it is worth
dressing well each day-despite the effort it costs you. When you look good you
feel better. Here are some tips to make the dressing adventure less onerous:
Get A Shoe Horn
To get shoes on try a long-handled shoe-horn. With a shoe horn you don't have to
bend as much to get tight fitting shoes on.

#4411

From: tina_semal
Date: Sat Nov 14, 2009 9:16 pm
Subject: Disability Benefits

tina_semal

Offline

At certain points in their lives, some people with Parkinson's are not able to
work and must rely on benefits from private and public disability programs.
Although efforts have been made to streamline processes, applying for
benefits-and ensuring eligibility-can be complicated, time-consuming, and
frustrating. Two key points emphasized by advocates and benefits administrators
alike: 1) do not throw away any potentially relevant paperwork you receive from
an employer, an insurer, a government agency, or an advocate on your behalf and
2) keep copies of everything that you submit.

Below are snapshots of some of the main benefit programs for people with
disabilities, including links to more in-depth information. The programs
discussed include: Social Security Disability Insurance (SSDI), Supplemental
Security Income (SSI), Medicare, State Health Insurance Counseling and
Assistance Programs (SHIP), and Medicaid. Also discussed briefly is the Ticket
to Work and Work Incentives Act of 1999, a federal law designed to improve the
ability of people with disabilities to join the workforce without losing
important medical benefits, and private-sector disability plans offered by
employers.

Government Programs
There are a variety of government programs that provide cash on a monthly basis
for people with disabilities who have difficulty making ends meet. Restrictions
abound and the monthly amount is often barely sufficient to cover anything
beyond the most basic expenses; however, efforts are under way in some states to
implement more comprehensive cost-of-living analyses in order to improve benefit
amounts. A federal government agency, The Social Security Administration (SSA),
offers a comprehensive and user-friendly information on the full range of
disability benefits it provides; it is available online at www.ssa.gov/dibplan/.
The medical requirements for disability payments are the same for all federal
programs and a person's disability is determined by the same process. In
general, you may be considered disabled under Social Security rules if:

��you cannot do the work that you did before;
��the SSA decides that you cannot adjust to other work because of your medical
conditions(s);
��your disability lasts or is expected to last for at least one year or to
result in death.

One way to determine if a person is potentially eligible for any of the
government's programs for disabled people is to check out the Benefit
Eligibility Screening Tool (BEST), operated by Social Security Online at
http://best.ssa.gov/. (Note: The BEST tool can be cumbersome to access and
navigate itself. Often a follow-up phone call with a government official is
necessary to clarify results obtained through BEST.)

A. General Financial Assistance

1) Social Security Disability Insurance (SSDI)
The SSDI program is geared primarily toward those under age 65 who had fairly
substantial "on the books" employment records before leaving work because of a
disability. The amount of the monthly benefit it provides is based on work
history. The federal government's Social Security Administration (SSA)
administers the program.

For more information on the specifics of SSDI, visit the SSA's Web site at
www.ssa.gov. The agency also operates a toll-free telephone number,
1-800-772-1213. That number is also the one to call to apply for SSDI benefits.
The claims representative will ask specific questions about the disability and
discuss the required documents that must accompany an application. (Probably the
most important document is a letter of diagnosis from a physician; other
required documents may include a birth certificate or social security card.)

Note: It can take a few months for SSDI to kick in. During that period,
applicants may be eligible for SSI (Supplemental Security Income) benefits from
the government.

In terms of health insurance, SSDI beneficiaries are automatically eligible for
Medicare after collecting SSDI benefits for 24 months. They may also be eligible
for Medicaid-which provides similar, but not the exact same, services-but they
must submit a separate Medicaid application. For further information, visit
www.cms.hhs.gov, the Web site of the Centers for Medicare and Medicaid Services
(CMS).

2) SSI (Supplemental Security Income)
The government's SSI (Supplemental Security Income) program also provides a
monthly cash stipend to people with disabilities who need help meeting their
basic needs for shelter, food, and clothing. It differs from SSDI in that it is
based on financial need only and generally applies to those who have extremely
limited "on the books" work history. (Note: SSI is also available to individuals
who are waiting for their SSDI to start.)

Many people with disabilities consider SSI a double-edged sword. On the one
hand, it provides a guaranteed (although not remotely generous) monthly benefit;
however, in order to be eligible, one must have very few assets. For instance,
under current rules a single person living alone cannot have total assets worth
more than $2,000 (not including the home lived in and the land it is on) and
cannot have unearned income of more than $638 a month. With such restrictions,
it's small wonder that in order to maintain eligibility many people have no
choice but to refuse to accept payment for "on the books" work or spend much of
their time volunteering.

For more specific information on SSI, including eligibility requirements, read
the Electronic Booklet on SSI at http://www.socialsecurity.gov/pubs/11000.html
or call 1-800-772-1213.

B. Health Care

1) COBRA
A federal law, the Consolidated Omnibus Budget Reconciliation Act (COBRA),
stipulates that when an employee loses coverage under an employer-sponsored
health plan, he or she must be allowed to elect to continue coverage under that
plan for a set period of time on a self-pay basis. COBRA applies most frequently
in instances when an employee is laid off (for reasons other than "gross
misconduct") or his or her hours are reduced. The law also applies to the
employee's dependents in the event of divorce, the employee's death, or certain
other situations.

Generally, employers are required to offer access to their health care plan for
18 months after the employee is terminated or his or her hours are reduced. That
period is extended to 29 months for an individual who is determined to be
disabled under the Social Security Administration (SSA) guidelines. See
http://www.ssa.gov/disabilityresearch/wi/medicare.htm#cobra for more information
about the specific guidelines.

2) Medicare
The government-administered Medicare program provides health care services for
people aged 65 and older-and for many people with disabilities who are younger
than 65. For specific information and to determine eligibility, visit
www.cms.hhs.gov, the Web site operated by the Centers for Medicare and Medicaid
Services (CMS), or call 1-800-MEDICARE (1-800-633-4227).

The Medicare Prescription Drug Improvement and Modernization Act of 2003 (MMA),
signed into law in December 2003, provides the first-ever prescription drug
benefit under Medicare. For more information on the MMA, visit
http://www.cms.hhs.gov/MMAUpdate/01_Overview.asp#TopOfPage.

SSDI beneficiaries are automatically eligible for Medicare after collecting SSDI
benefits for 24 months. They may also be eligible for Medicaid-which provides
similar, but not the exact same, services-but they must submit a separate
Medicaid application. For further information, visit www.cms.hhs.gov.

State Health Insurance Counseling and Assistance Programs (SHIP Programs)
For Medicare recipients, every state has a program designed to help find the
most appropriate insurance options for your specific situation. Visit
http://www.medicare.gov/contacts/static/allStateContacts.asp for more
information about what is available in your state.

3) Medicaid
Medicaid is a joint federal-state program that provides health care services
primarily to low-income and needy people. Among those potentially eligible for
coverage are people with disabilities and those who receive federally assisted
income maintenance payments, such as Supplemental Security Income (SSI). Because
state governments kick in a substantial portion of Medicaid budgets, benefits
vary widely around the country. Nearly all programs help pay for prescription
drugs.

For specific information and to determine eligibility, visit www.cms.hhs.gov,
the Web site operated by the Centers for Medicare and Medicaid Services (CMS),
or look up a telephone number online for the Medicaid administration in your
area: http://www.cms.hhs.gov/RegionalOffices/.

SSDI beneficiaries may be eligible for Medicaid-which provides similar, but not
the exact same, services as does Medicare-but they must submit a separate
Medicaid application. For further information, visit www.cms.hhs.gov.

Note: Until July 2001, CMS was known as the Health Care Financing Administration
(HCFA). Although the name has changed, the agency's services and programs have
not.

Ticket to Work and Work Incentives Act of 1999
Passed by Congress and signed into law by then-President Clinton, the "Ticket to
Work" legislation was designed to eliminate restrictions that did not allow
disabled people to work, even part-time, without losing crucial medical benefits
such as Medicare or Medicaid. Often the amount earned by working would not even
equal the value of the lost benefits. As a result, people with disabilities have
long had one of the highest unemployment rates in the country-about 70 percent
in 2000.

Implementation of the law continues, often slowly, around the country. For more
specific information on Ticket to Work, visit http://www.cms.hhs.gov/TWWIA/.

Employer-offered Disability Plans
Many employers offer short-term and/or long-term disability plans that employees
can choose to put money into while they are working. After leaving work because
of disability (and keep in mind that different plans have different eligibility
requirements as to what constitutes disability), qualified employees receive a
portion of their salary while they remain disabled.

Private-sector plans usually begin paying out within a period of months after
disability begins. That compares favorably with most government disability
programs, which can take a year or more to approve a disability claim and begin
disbursing payment. Some private plans pay a set amount regardless of what an
insured patient receives from Social Security, while other plans may offset the
benefits they pay by whatever disability payments the insured may receive from
Social Security.

Information found in this section and elsewhere on the Web site is intended to
provide general advice only. The Foundation strongly recommends that financial
and insurance-related decisions be made only in consultation with qualified
experts. The presence of links in this section and elsewhere on the Web site
does not signify an endorsement by The Michael J. Fox Foundation for Parkinson's
Research, and the Foundation is not responsible for any information found on
other Web sites.

#4410

From: tina_semal
Date: Sat Nov 14, 2009 9:14 pm
Subject: What happens financially if I can no longer work

tina_semal

Offline

That depends on your situation when you stop working because you are disabled.
If you are already of retirement age, and are fully vested in your pension, you
probably will retire much as if you would if you did not have PD. Some pension
plans include medical benefits that may even cover prescription medications. In
some cases you may be eligible for early retirement, which generally reduces the
amount of your benefits by a percentage that depends on how many years away from
full retirement you are when you stop working.

You may also have a 401(k) or other retirement savings plan that you've been
contributing to while working. Under certain circumstances a disabled person may
draw down the assets in such funds before age 59�, but there may be penalties
or taxation consequences that make this undesirable.

If you leave work because of a disability before retirement age, there are
several possible sources of income or government assistance that you may be
eligible for, including SSDI, SSI, and Medicare

#4409

From: tina_semal
Date: Sat Nov 14, 2009 9:11 pm
Subject: Re: Parkinsons and poor performance at work

tina_semal

Offline

Am I protected under the Americans with Disabilities Act?
Job protection under the Americans with Disabilities Act (ADA) is only available
if you are "disabled," inform your employer of your disability, and request a
"reasonable accommodation" to allow you to continue to do your job at a
satisfactory level. At the same time, many people understandably prefer to keep
their personal and professional lives separate, for fear that if they tell their
employer they will be eventually be terminated on some pretext that disguises
the employer's real reason - the employee's PD.

PD in its more advanced stages is recognized by the federal government as a
disability, allowing those affected to secure the protections of the ADA. The
actual determination of disability is made by the individual states according to
federal standards. However, because the ADA requires an individual to be
impaired in some material way affecting his daily life, not every PWP will meet
the standards set. If one seeks a determination at an early stage of the
disease, it is unlikely that the claim will meet the standards of an accepted
disability.

An additional note on the ADA, from the Houston Business Journal: "Since
Congress passed the ADA in 1990, courts have attempted to juggle the sweeping
statutory and regulatory text, the realities of the workplace and the ADA's
mandate to protect the disabled� The courts have, for the most part, narrowed
the viable claims under the ADA. As a result, the United States Equal Employment
Opportunity Commission (EEOC) has experienced an annual decrease in the number
of disability charges it receives, and the percentage of federal cases in which
plaintiffs have prevailed under the ADA has decreased annually� It is likely
that this trend will continue." (Ted Meyer, February 2002

--- In nobordersforparkinsondisease@yahoogroups.com, Victor Nj <victornj36@...>
wrote:
>
> I have Parkinsons disease, I am 49 years old.
> Can I apply for early retirement now?
> or How long I should wait?
> I do not want to loose my job because of my poor performance at work.
>
> Any advice, any own experience, any link to get more information
>
> Thanks
> Victor
>
>
>
>
> [Non-text portions of this message have been removed]
>

Reply | Forward | Messages in this Topic (3)

#4408

From: tina_semal
Date: Sat Nov 14, 2009 9:06 pm
Subject: Re: Parkinsons and poor performance at work

tina_semal

Offline

Hope you can find something in thiq site

www.healthtalkonline.org/Nerves_and_brain/Parkinsons.../3539/ -

--- In nobordersforparkinsondisease@yahoogroups.com, Victor Nj <victornj36@...>
wrote:
>
> I have Parkinsons disease, I am 49 years old.
> Can I apply for early retirement now?
> or How long I should wait?
> I do not want to loose my job because of my poor performance at work.
>
> Any advice, any own experience, any link to get more information
>
> Thanks
> Victor
>
>
>
>
> [Non-text portions of this message have been removed]
>

Reply | Forward | Messages in this Topic (3)

#4407

From: tina_semal
Date: Sat Nov 14, 2009 9:03 pm
Subject: Employment and Support Allowance

tina_semal

Offline

Two thirds of younger people with Parkinson's disease who responded to a new
survey by the Parkinson's Disease Society have been wrongly forced into job
seeking, despite being physically unable.



The survey uncovers major problems with the medical testing process for
Employment and Support Allowance, which replaced Incapacity Benefit one year ago
this week.



Employment and Support Allowance (ESA), has a tick box style medical test to
determine whether a person is capable of work. This test does not allow for
fluctuating conditions like Parkinson's, in which people can be capable one
minute, but severely disabled the next.



The decision is based on the opinion of the assessor, who in many cases, does
not refer to a person's medical history, and is untrained in Parkinson's.



The survey of people under 65 with Parkinson's showed that 2 in 3 (66%)
respondents who had gone through the ESA process had been judged fit for work,
and put onto Jobseeker's Allowance, forced into early retirement, or given ESA
but placed in a Work Related Activity Group.



9 in 10 of these (93%) thought the decision was wrong.



However, the Government plans to move all existing Incapacity Benefit claimants
onto ESA by 2013.



12,000 people with Parkinson's currently receive incapacity benefits in the UK.



As a result of the findings of our survey, the Parkinson's Disease Society will
submit a report to the Government about the changes that are needed for the
system to be fair.



Our report will recommend:

�more time given for medical assessments
�training for medical assessors on complex conditions like Parkinson's
�previous medical records to be properly taken into account


Val Buxton, Director of Policy, Campaigns and Information at the Parkinson's
Disease Society, said:



"Nearly half of people of working age with Parkinson's are on Incapacity Benefit
or ESA.



"Parkinson's disease is a complex and fluctuating condition, with the potential
for someone affected to appear healthy one minute, but to be incapacitated the
next.



"We want the Government to give assessors training on the nature of Parkinson's,
give them more time to assess people with Parkinson's, and to encourage
assessors to consider previous medical history.



"We want to see these changes happen as soon as possible, to make sure that
no-one with a complex condition like Parkinson's is unfairly accused of being a
benefits cheat

#4406

From: Victor Nj <victornj36@...>
Date: Sat Nov 14, 2009 3:25 am
Subject: Parkinsons and poor performance at work

victornj36

Offline

I have Parkinsons disease, I am 49 years old.
Can I apply for early retirement now?
or How long I should wait?
I do not want to loose my job because of my poor performance at work.

Any advice, any own experience, any link to get more information

Thanks
Victor




[Non-text portions of this message have been removed]

Reply | Forward | Messages in this Topic (3)

#4405

From: tina_semal
Date: Tue Nov 10, 2009 3:55 pm
Subject: Parkinson's Disease - What are the Other Forms of Parkinsonism?

tina_semal

Offline

�Postencephalitic parkinsonism. Just after the first World War, a viral disease,
encephalitis lethargica, attacked almost 5 million people throughout the world,
and then suddenly disappeared in the 1920s. Known as sleeping sickness in the
United States, this disease killed one third of its victims and in many others
led to post-encephalitic parkinsonism, a particularly severe form of movement
disorder in which some patients developed, often years after the acute phase of
the illness, disabling neurological disorders, including various forms of
catatonia. (In 1973, neurologist Oliver Sacks published Awakenings, an account
of his work in the late 1960's with surviving post-encephalitic patients in a
New York hospital. Using the then-experimental drug levodopa, Dr. Sacks was able
to temporarily "awaken" these patients from their statue-like state. A film by
the same name was released in 1990.) In rare cases, other viral infections,
including western equine encephalomyelitis, eastern equine encephalomyelitis,
and Japanese B encephalitis, can leave patients with parkinsonian symptoms.

�Drug-induced parkinsonism. A reversible form of parkinsonism sometimes results
from use of certain drugs -- chlorpromazine and haloperidol, for example --
prescribed for patients with psychiatric disorders. Some drugs used for stomach
disorders (metoclopramide) and high blood pressure (reserpine) may also produce
parkinsonian symptoms. Stopping the medication or lowering the dosage causes the
symptoms to abate.
�Striatonigral degeneration. In this form of parkinsonism, the substantia nigra
is only mildly affected, while other brain areas show more severe damage than
occurs in patients with primary Parkinson's disease. People with this type of
parkinsonism tend to show more rigidity and the disease progresses more rapidly.

�Arteriosclerotic parkinsonism. Sometimes known as pseudoparkinsonism,
arteriosclerotic parkinsonism involves damage to brain vessels due to multiple
small strokes. Tremor is rare in this type of parkinsonism, while dementia --
the loss of mental skills and abilities -- is common. Antiparkinsonian drugs are
of little help to patients with this form of parkinsonism.

�Toxin-induced parkinsonism. Some toxins -- such as manganese dust, carbon
disulfide, and carbon monoxide -- can also cause parkinsonism. A chemical known
as MPTP (1-methyl-4-phenyl-1,2,5,6-tetrahydropyridine) causes a permanent form
of parkinsonism that closely resembles Parkinson's disease. Investigators
discovered this reaction in the 1980s when heroin addicts in California who had
taken an illicit street drug contaminated with MPTP began to develop severe
parkinsonism. This discovery, which demonstrated that a toxic substance could
damage the brain and produce parkinsonian symptoms, caused a dramatic
breakthrough in Parkinson's research: for the first time scientists were able to
simulate Parkinson's disease in animals and conduct studies to increase
understanding of the disease.

�Parkinsonism-dementia complex of Guam. This form occurs among the Chamorro
populations of Guam and the Mariana Islands and may be accompanied by a disease
resembling amyotrophic lateral sclerosis (Lou Gehrig's disease). The course of
the disease is rapid, with death typically occurring within 5 years. Some
investigators suspect an environmental cause, perhaps the use of flour from the
highly toxic seed of the cycad plant. This flour was a dietary staple for many
years when rice and other food supplies were unavailable in this region,
particularly during World War II. Other studies, however, refute this link.

�Parkinsonism accompanying other conditions. Parkinsonian symptoms may also
appear in patients with other, clearly distinct neurological disorders such as
Shy-Drager syndrome (sometimes called multiple system atrophy), progressive
supranuclear palsy, Wilson's disease, Huntington's disease, Hallervorden-Spatz
syndrome, Alzheimer's disease, Creutzfeldt-Jakob disease, olivopontocerebellar
atrophy, and post-traumatic encephalopathy.

#4404

From: tina_semal
Date: Tue Nov 10, 2009 3:52 pm
Subject: Tips for Managing All of Your Parkinson�s Disease Medications

tina_semal

Offline

If you have had Parkinson's disease (PD) for a while, you have undoubtedly
become painfully familiar with pills -- and lots of them. As your PD progresses,
it often becomes harder and harder to keep track of things, never mind all of
the pills you need to take and when you need to take them. You also now have to
worry about interactions of drugs with other drugs, or of drugs with certain
types of foods.

How can you get on top of, and stay on top of, your medications? Here are some
tips for effectively managing and monitoring your medications and their effects
on you.

Taking Stock and Creating a Routine
First, make a list of all of the medications you are currently taking. Write
down the name, the amount and the times you take the medications.

Then, take this list to your neurologist. Tell your neurologist that you prefer
that one doctor takes responsibility for overseeing all your Parkinson's disease
or neurological medications. When you have more than one doctor prescribing for
you, it becomes easier to overlook potentially unpleasant or even dangerous side
effects and drug interactions from the use of multiple medications. Go over your
list of medications with your neurologist to make sure that the list is correct
and that the combination of medications it represents is the best combination
for you.

Once you have a correct and complete list of your prescription medicines, have
the list printed on card stock and laminate it. Create several copies of this
laminated list of your medications. Or, store the list on your portable
electronic device (PDA or cell phone). Carry one copy with you wherever you go.
Always show your list of medications to any doctors who might treat you for any
condition.

Your next step is to go over your list of medications and plot out the time you
are supposed to take each medication. The goal is just to get a general sense of
when each medication needs to be taken. Do they fall into patterns like 'once in
the morning,' 'once at midday' and 'once before bedtime'? Write down or create a
graphic representation of when you are to take your meds. This graph will serve
as a visual reminder to you and your care partner.

You might also consider obtaining a plastic pill-organizer. These organizers can
be obtained from the pharmacy, and they can be pretty elaborate. They can
organize your meds by day of the week and by time of day. Some models even
organize your meds by dose within each day and time category. Some pill
organizers are electronically rigged to sound off when you are due to take a
pill. There are also small pocket containers that you can use to store your
pills when you need to go out for long periods of time.

Dealing with Pharmacy Hassles
Everyone knows what a hassle it can be to get your prescription medicines from
even the best run and well-staffed pharmacies. The best way to deal with the
hassles you find at the pharmacy is to prepare in advance for them.

I recommend that you choose one pharmacy as your preferred pharmacy. Get your
insurance information set up with that pharmacy so that you do not need to
provide it each time you go for some new medication or adjustment to your
current ones. If the pharmacy is a member of a chain of stores like CVS or
Walgreens, you ask the pharmacist if your insurance information will be
available to other stores in the chain. If so, then you will have a wider choice
of stores to go to get your medications with ease. You might also choose a
pharmacy / store that is open 24 hours a day.

Try to pay for your medications with a debit card so that you have an
independent record of what you bought and when.

Save money on your medication. To keep costs of medications down, you might
consider purchasing medications in bulk. Many insurance companies now offer this
sort of option. You have your bulk orders delivered to your door via mail. Your
doctor may also be able to help you keep costs down by prescribing generic
versions of some of the drugs you need. You may also be eligible to receive some
of your prescription medications for a reduced cost or even for free. Contact
the American Parkinson Disease Association (APDA) to check on your eligibility.

Know your medication. Once your pharmacist fills your prescription, check the
label to be sure you can read it and that you have received the right
medication. If it's a new medication, ask your pharmacist for instructions on
how to take it (with meals 3 times a day, for example), and ask if there are any
side effects to look for. If it's a refill of medicine you have been taking
regularly, quickly open the bottle to make sure the pills look familiar. If they
do not, ask the pharmacist about it.

#4403

From: tina_semal
Date: Tue Nov 10, 2009 3:51 pm
Subject: Changes That Need to Be Made to the Home When You Have Parkinson's

tina_semal

Offline

.
If you have been diagnosed with Parkinson's Disease (PD), moving around
sometimes becomes a chore �- even in the very early stages. As your PD
progresses, you may become unsteady in your balance and then falling over
becomes a real possibility. If you fall, it hurts of course, and it can also
cause damage that can haunt you for months afterwards. Who wants to deal with
the pain of a hip fracture or a blow to the head or broken fingers and wrist
bones where you tried to cushion the fall? You can do many things to avoid falls
and to make moving around in your home easy and safe.

The home of a person with PD will have to be different from the home of a person
without PD. A person with PD should not have to attempt to step over loads of
clutter or walk along polished or waxed floors. A person with PD should not be
forced to navigate holes, upended floorboards, nails or clutter when attempting
to find the bathroom in the middle of the night. A person with PD should not
have to attempt to travel up and down stairs several times a day to get to the
car or to get outside or to get to the laundry room and so forth. As soon as you
are diagnosed with PD, you should begin to re-arrange the home in order to
maximize your safety and comfort.

In order to make the house safe for a person with PD, changes will need to be
made -- most or all relatively minor. As the PD progresses, larger changes
involving remodeling sections of the home can be considered. But for the first
few years, relatively simple changes and adjustments will go a long way to
increasing the safety of the home for the person with PD.

Evaluate the Current Set Up

Go from room to room and make a list of potential changes.

Woodsy/HAAP Media LTD.
.Before implementing all of the safety changes you have in mind, consult with
your spouse and the rest of the family. The whole family needs to be on-board
with the changes -- and they can all help implement them.

Go from room to room. Check for potential hazards, and make a list of changes
you think you will need in order to move around in the room when your balance is
impaired. Imagine yourself, shaky, off-balance, tired, with poor visual
acuity�and yet urgently needing to get to the bathroom or to the kitchen or the
phone etc. Can that person navigate safely though the room in order to get to
where he needs to be? What needs to change in order to make the room safer? List
the needed changes then proceed to the next room. Repeat the evaluation process
for each room. Once you are finished, you should have several pages of changes
that need to be made.

Anything that a shaking, off-balance, medicated, visually impaired and anxious
person might find troublesome should be checked:

�Each room should be well-lit with an easy to reach light switch. All stairwells
inside and outside the home should be well lit. Use lots of of nightlights that
provide dim lighting in spaces like the bathroom and kitchen. Nightlights can
also be placed along a path from bedroom to bathroom. Persons with PD often need
to get up in the middle of the night to urinate. Place the individuals' bedroom
as close as possible to the bathroom and ensure adequate lighting from bedroom
to bathroom.
�Get rid of anything that a person with PD can trip over. Use extension cords
sparingly, and always secure them out of the places where people walk. Bundle
all the cords and secure them to the wall instead of the floor. Check the floors
in each room, looking for protuberances, unruly baseboards or floorboards, loose
nails or tiles etc. Remove any rugs that are not securely fastened to the floor
so they can't slip. Check doorways from one room to another so that baseboards
are not protruding upwards. On the outside of the house, check for uneven or
broken sidewalks/pathways or holes in the driveway. Consider having the pathway
paved with and smoothed with asphalt.
�Make sure that doorknobs on all doors are secure and not loose. Make sure that
the doors open easily and smoothly.
�Make sure all floors are non-slippery. Consider installing strategically placed
handrails near frequently used sites and where it might make getting up easier.
�Consider installing nonskid runners on the route from bed to bathroom, in the
shower and tub, where sitting and getting up from sitting occurs, and along all
stairwells.

Your next step is to consult an expert. Have them come in and check your home
for safety.

Where can you find an expert to come in and inspect your home? There are several
possibilities. Utility companies (gas and electric) will often do an inspection
for free. Your local fire or police department may offer a home safety
assessment at no cost. Home inspection services offer inspections of the entire
house, including safety issues, for a few hundred dollars. As your PD
progresses, the local hospital or nursing association can assess your home for
your special safety needs. These sorts of home healthcare safety assessments are
often covered by Medicare and insurance plans.

Once your expert provides his recommendations, show him your list or your cache
of pages of needed changes. Does the expert have anything to say about your
list? Any tips for making the indicated changes? Once you get the expert's
input, its time to combine the expert's assessments and recommendations with
your own. Then, begin to implement those safety adjustments and/or repairs.

If you cannot make the changes on your own, spend the necessary money to get the
job done right. This is your safety we are talking about!

Your PD-adjusted home should conform to basic safety regulations that apply to
all homes. If there should be a fire or a break-in, persons with PD may find it
more difficult to respond then people without problems of motor slowness or
rigidity. So you need to insure all the usual home safety standards are in place
in your home and then adjusted in case of emergency so that a person with PD can
respond. To make a phone easier to get to for a person with PD, get more phones
installed or have the PD patient always carry a cell phone. Place emergency and
other medical contact numbers next to every phone. Make sure smoke detectors are
placed throughout the major zones in the house. Place at least one fire
extinguisher in an accessible place. Ask the fire department if it can be
adjusted to make it easier for a person with PD to operate it. Consider
installing a burglary alarm system in the home and have the company that
operates and services the alarm system suggest some changes to make it easier to
de-activate for a person with PD.

As your PD progresses, you may one day find it difficult to move around the
house at all. It would be some much more convenient for you if everything you
needed was in one large room or space. Some people with PD attempt to create
that kind of living space for themselves by remodeling a first floor section of
the home. You will need bathroom facilities, handrails, a kitchenette and a
sleeping area all in one space that will be carved out of your current home. To
build such a space, you may sometimes need to check with city hall or zoning
regulations but that is usually not a problem. The process can bye expensive but
there may be tax breaks for you for this kind of remodeling of the home. Check
with your tax preparation specialist to find out.

#4402

From: tina_semal
Date: Tue Nov 10, 2009 3:45 pm
Subject: Cognitive Restructuring as a Coping Strategy for Parkinson's Disease

tina_semal

Offline

Positive cognitive restructuring refers to active attempts to change one's view
of a stressful situation in order to see it in a more positive light. If I tell
myself that my Parkinson's disease means that my life is over and only suffering
awaits me, then I am going to be miserable. If I on the other hand deny that PD
places any limitations on my activities then I will likely make others miserable
(because they will worry about me) and I will unwisely put off medical treatment
for myself until I come to the conclusion that PD does in fact place real limits
on some of my activities. Thus, I need to avoid the 2 extremes when it comes to
thinking about PD's effects:

�PD does not mean that my life is over
�and PD does not mean that my life can continue on as it always had-without
limitations.
Instead I need to develop a balanced view of PD's effects on myself and my life.
Positive cognitive restructuring can help with development of a realistic and
balanced view of my situation.

In practice it works something like this: Whenever I start to tell myself such
absurdities like `my life is over�I can never live a full life again etc' I can
replace these thought with others such as `While PD certainly has imposed
restrictions on some of my activities, I can still do most of the things I love
to do and I can even offer to others the benefits of my experience of learning
to cope with a serious disease." The idea is to look at your situation
realistically and that include strengths as well as limitations.

When you practice this cognitive restructuring technique it often works better
to write down your positive responses to those catastrophic forms of thinking
that get you down. Writing out the positive interpretation of your situation
somehow makes it more memorable.

#4401

From: tina_semal
Date: Tue Nov 10, 2009 3:46 pm
Subject: Seeking Support to Cope with Parkinson's Disease

tina_semal

Offline

When in trouble one of the smartest things anyone can do is to tap into a social
support system for help. No one person can do it all-especially when that person
has Parkinson's disease. Most people with PD find that they benefit tremendously
from the help they receive from a small group of reliable individuals.

One of the first things you should do when you are diagnosed with PD is to ask
for help from a trusted group of relatives and friends. Your wider social
support network should include your medical care team, your mental health
counselor, members of the clergy, a financial adviser and others. Sources of
help might come from parents, spouses, adult children, friends, colleagues from
work, professionals, and God). Some of the individuals in your support network
can give you professional advice for example on medical and financial issues.
Others can build you up with emotional or spiritual support and yet others can
direct you to resources and help that you did not know existed. The best way to
create a social support network is to build on your existing network of close
friends and loved ones and then add to it as needed. To add to your network of
support ask the individual explicitly for help. Honesty about your condition is
usually the best policy.

#4400

From: tina_semal
Date: Tue Nov 10, 2009 3:43 pm
Subject: Negative Coping Strategies for Parkinson's Disease

tina_semal

Offline

Negative Coping Strategies for Parkinson's Disease
From Patrick McNamara, Ph.D., for About.com
Created: August 04, 2009

About.com Health's Disease and Condition content is reviewed by the Medical
Review Board

.See More About:coping with parkinson'sliving with parkinson's
Sponsored Links

In general, it does not help matters to ruminate, to act helpless or to withdraw
socially when confronted with a major stressor or life challenge like
Parkinson's disease. Now note that I said `in general'. One can imagine
situations when it would be helpful to withdraw socially, go off alone to think,
to ponder and to hit an emotional bottom. At least many people who have been
through a major life challenge say that it was in fact necessary to go through a
dark period of despair and isolation before they could come back to face the
challenges presented to them.

But if rumination, helplessness and social isolation go on for long periods of
time they are usually counter-productive coping strategies and should be
resisted.

�Rumination refers to a kind of obsessive thinking and worrying about things and
include all kinds of unwelcome thoughts like intrusive thoughts, negative
thinking, catastrophizing, anxiety amplification, self-blame, and fear.
�Helplessness refers to kind of return to a child-like state or letting others
control your life and actions. You become passive, confused, exhausted, and
hopeless.
�Social withdrawal refers to staying away from other people or preventing other
people from knowing about your situation. You hide your emotions, you avoid
others and you even avoid social activities that use to give you pleasure.
All of these negative coping strategies just make matters worse when you are
trying to adjust to PD. Nevertheless you must remain compassionate towards
yourself and others when you are afflicted with these negative strategies. Try
not to blame yourself for them. Tell yourself that it is understandable to be
tempted by them but that you will resist them. Try to resist them by countering
them with positive coping strategies of problem-solving, seeking help from
others and cognitive restructuring techniques.

#4399

From: "distoweb" <fer14@...>
Date: Mon Nov 9, 2009 6:52 pm
Subject: Alternative ways to contribute to the understanding of the disease

distoweb

Offline

Hello friends.

Given our circumstances, it seems interesting to embrace any option, tool or
advice that allows us to cope our disease and our whole existence from a
different point of view, always as positive as possible. It is also very
important for caregivers and their active perspective.

The latest trends argue that, although we probably won't like, body and mind are
inseparable, and, especially when dealing with diseases, symptoms should not be
considered enemies (however painful that may be) but `fellows' that indicate
that something may be wrong in our lives.

According to this, and although it is really hard, you need to sit down to
listen quietly, because the body is always right. A revolutionary approach, if
you want, and we should bring out the best from it. Fortunately we have some
clues.

Talking about advances in medicine, we are now entering in the realm of somatic.
It's just a matter of time, according to this approach, that skeptics accept
most of the new scientific evidences which are to come.

Regarding movement disorders, our body reveals that we do not have so much
control over ourselves as we wrongly feel, not only from the inside out but the
opposite too.

Control and self-confidence are inseparable. Therefore, first of all everybody
needs an acceptance of the real situation: we must accept that we have
limitations, and so we are imperfect. This will surely help a lot: from this
point, if we eliminate the appearances and build ourselves from the basis of
truth, whatever it is, we will build strong foundations on which to grow a deep
confidence in ourselves, and also in life; in essence, there we have the
foundations of what should be our personal growth.

For further information about this, I strongly recommend you to access:

http://webs.ono.com/distoweb

and press the button:  INTEGRAL REINFORCEMENT

Another innovative and alternative way to be considered as a helpful support.

Greetings,

Fernando
Valencia