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January 31, 2004

Medicare Bill Costs Underestimated

This is yesterday's news but...

When Congress voted on the Medicare bill, they estimated the cost at $400 billion. However, the Bush administration calculates that the cost really will be $530 billion. So Congress was off by only $130 billion!

Scrappleface, one of the best-written humor websites, has written a parody 'news' article - "Wealthy Senators to Cover $130B Medicare Drug Gap".

Posted by Dave at 06:06 PM | Comments (0) | TrackBack

January 30, 2004

New HD Organization

I'm hate it when I come across a new Huntington's Disease initiative and their information raises more questions than answers.

I stumbled across a beautiful website for an organization called the Huntington Project. It has an excellent logo and the navigation is simple. It's one of the nicest looking HD websites out there.

So I dug deeper...

They have a project called SET-HD (Systematic Evaluation of Treatments for Huntington's Disease) and they are looking for Huntington's Disease treatments that "make a difference". That certainly makes me more interested!

But when I read further, their plan is to have Internet surfers 'nominate' HD treatments that they think should receive more study. Once they've received the nominations, they'll form a committee that will determine the 25 treatments that should receive the highest priority and then write a paper on it.

I'm glad more people are looking for new ways speed up the development of a HD treatment. But...

I just don't see how this helps. It has the feel of "how can we spend this grant money" and get published. Our community already has groups (and numerous influencial individuals) that determine research priorities. The most prominent being the Huntingtons Study Group (which links to this website).

It would have been faster and more straight forward if they had just decided to survey the leading HD researchers with their preset criteria and worked from that. I'm also somewhat dubious that this project will actually influence how future research dollars are allocated.

Having said that...I hope they are successful beyond their wildest dreams. Our community needs it.

Posted by Dave at 08:57 PM | Comments (2) | TrackBack

January 29, 2004

What's Going On At Amarin?

Something is going on, I just don't know what. Amarin is important to the HD community as it has an HD drug nearing a hoped approval by the FDA.

In the first week of December Amarin announced that they were broke and might go bankrupt by the end of the month. Since then, the company has made no public statements, but is still in business.

After the December bombshell, the stock quickly dropped 40%, nearing the point where they would risk being delisted by NASDAQ. Since then the stock has held steady.. until this week. All of sudden the thinly traded stock took a huge jump both in price and volume.

Last week, only a few thousand shares traded every day. Two days ago, 1.17 million shares traded hands. The share price jumped 56% in one day. Since then, the volume has dropped and the price has dropped a bit.

Is this bounce histeria, rumor chasing, or is it due to an expected announcement from the company? I'm not throwing in my money, but I'd love to know just what happened.

For more on Amarin, read this from our archives.

Posted by Dave at 08:01 PM | Comments (0) | TrackBack

January 28, 2004

Three Sides Of Huntington's Disease

I've just finished a 16-hour day and an early day tomorrow, so this will be quick.

But there is so much to write about, including a couple of interesting Huntington's studies. I'll be writing on those after I've had a chance to really go through them.

Until then, a thought...Health care professionals don't always acknowledge all three sides of Huntington's Disease. What are they?

They are the emotional symptoms, he mental (cognitive) symptoms, and the physical symptoms.

Far too often the focus is mostly on the physical symptoms. Heck, the government usually doesn't grant disability to those with HD until the physical symptoms reach a certain point, no matter what the state of the emotional and cognitive symptoms.

These three areas hit those with HD to varying degrees and at different rates. Each area comes with its own unique issues.

Heath care professionals: Don't forget to recognize and treat all three areas. Chorea is only a small, though visible, part of the disease.

Posted by Dave at 09:55 PM | Comments (0) | TrackBack

January 27, 2004

Bad Day For Huntington's Research

The protestors won and more people will die because important research is being delayed.

A few weeks back I wrote about the Cambridge's new research facility and those who were against it. The facility was going to be a premier facility for studying Huntington's Disease and other incurable disease.

According to the London Times, Cambridge has decided to cancel it. The reason it was cancelled? Cost, security demands, & new regulations.

It's a crying shame.

Posted by Dave at 07:53 PM | Comments (0) | TrackBack

January 26, 2004

Does Disease Disqualify The Candidate?

RangleMD has written about Howard Dean having suffered from anxiety attacks in the 80's. He takes to task one blogger who feels this is reason enough for Dean not to be president.

Dr. Rangle makes these points:

"Depression and anxiety disorders (which often are tightly connected to each other) are very common conditions and many more people in government and in public life suffer either from major clinical depression and/or anxiety than most people will ever know....

Why do we still consider people with such common mental health illnesses such as depression and anxiety to be unable to function in life the way "normal" people do?"

He's right too. Depression hits 20% of American's in any given year. The Huntington's community has more than it's fair share of depression, both in pHD's and in the caregivers. Fortunately, treated properly, those with anxiety and/or depression can and do lead normal lives.

Posted by Dave at 06:42 PM | Comments (0) | TrackBack

January 25, 2004

Equipping Yourself

As a caregiver, do you sometimes feel lost and wish there was a 'map' to guide you? Trust me, you're not alone!

Marsha Miller has written a wonderful article that, if followed, will save any caregiver untold time and frustration. Read, reread, and then read it again. There is a lot of hard-won wisdom throughout the article.

Go, and read it now. You'll be glad you did.

Posted by Dave at 05:06 PM | Comments (0) | TrackBack

January 24, 2004

Study Translation

I'm trying something a little different.

This is a great study abstract that shows just how researchers are closing in on an effective treatment or cure for Huntington's Disease. However, the medical mumbo-jumbo is impossible for the average person to follow.

So I'm trying a new way of writing about these studies. So far I like the result.

Eur J Neurosci. 2004 Jan; 19(2): 273-279.

The serum- and glucocorticoid-induced kinase SGK inhibits mutant huntingtin-induced toxicity by phosphorylating serine 421 of huntingtin.

Rangone H, Poizat G, Troncoso J, Ross CA, MacDonald ME, Saudou F, Humbert S.

UMR 146 CNRS/Institut Curie, Bldg. 110, Centre Universitaire, 91405 Orsay Cedex, France Division of Neuropathology, Johns Hopkins University School of Medicine, Baltimore, USA Division of Neurobiology, Department of Psychiatry, Johns Hopkins University School of Medicine, Baltimore, USA Molecular Neurogenetics Unit, Massachusetts General Hospital, Charlestown, USA.

Huntington's disease (HD) is caused by abnormal polyglutamine (polyQ) expansion in the protein huntingtin.

Translation: HD is caused by a gene that makes a bad version of an important protein in the brain.

We have previously demonstrated the importance of the insulin-like growth factor I (IGF-1)/Akt pathway in HD.

Translation: IGF-1, an important chemical with numerous uses in the body affects the interacts with certain cells using an enzyme called 'Akt'.

Indeed, upon IGF-1 activation, Akt phosphorylates polyQ-huntingtin at serine 421 and abrogates its toxicity.

Translation: IGF-1 causes the enzyme to modify the bad version of the huntigtin protein.

In addition, we have demonstrated that Akt is altered in the brain of HD patients. Here, we investigate the role of the serum- and glucocorticoid-induced kinase (SGK) in HD.

Translation: Since what we found was so interesting we looked at another enzyme to see what it would do.

We show that SGK phosphorylates huntingtin at serine 421 and that phosphorylation can protect striatal neurons against polyQ-huntingtin-induced toxicity.

Translation: Guess what? This enzyme also modifies the bad huntingtin protein and helps keep the neural cell alive.

We find that SGK levels are increased in the brain of HD patients. Using a cellular model of HD, we demonstrate that the SGK dysregulation induced by polyQ-huntingtin occurs via the p38/MAPK pathway.

Translation: In the the test tube we found that the bad huntingtin protein has a way of disrupting this enzyme. (Slightly off topic: those studying HD and diabetes should look here a little more closely.)

Collectively, our results strongly suggest the involvement of SGK in HD and further imply that IGF-1 downstream signalling is a key transduction pathway that regulates the toxicity of huntingtin.

Translation: Researchers...look at this. There is a good chance that if you target this enzyme interaction with a drug it would help those with HD stay healthy.

PMID: 14725621

Posted by Dave at 04:40 PM | Comments (2) | TrackBack

January 23, 2004

Who Are The Uninsured?

The Marginal Revolution blog has an interesting piece on the uninsured. This is becoming a big topic on the campaign trail as candidates pitch their plans for reducing the number of uninsured and lower health care costs.

Put another way...some promise to cover more people and yet spend less money on health care. What are the odds that cutting costs will include cutting services to diseases such as Huntington's? Based on other countries experiences...a pretty good chance. So what about the uninsured we hear so much about?

15 million of the uninsured make over $50,000 a year. 12 million are only uninsured for part of a year. 14 million of the uninsured are actually eligible to be covered under existing programs.

Are there problems? Are their people whose health is suffering because of their poor health coverage? Certainly!! I've seen far too many in our community, but...

I'm not going to be very happy if some politician's plan results in taking money from Huntington's care (on the reasoning "there is no cure, so why spend any money") in order to pay for some yuppie with a six-figure income who doesn't care to buy insurance for themselves.

Go, read the whole article here.

Posted by Dave at 08:25 PM | Comments (0) | TrackBack

January 22, 2004

Research Update

I haven't posted as much lately on Huntington's Disease research in the last few weeks (though the recent sugar study is VERY interesting).

Does this mean there hasn't been much going on? No!!! Far from that! There has been quite a lot of wonderful research as scientists really seem to be getting a handle on the subtleties of Huntington's Disease and the huntingtin protein. It all leads toward a cure but...the details are rather boring to non-scientists.

But know this...in the last four months there has been an average of one Huntington's Disease study or article published in a medical journal EVERY DAY.

There is hope! There are several new patient studies in the works and the one of the biggest issues they have is finding enough people with HD to participate in the upcoming studies.

We are moving forward and there is great news ahead. Keep the faith!

Posted by Dave at 08:32 PM | Comments (0) | TrackBack

January 21, 2004

How To Kill Research

Derek Lowe nails this topic on his Drug Discovery blog. This should be must reading for any politician who believes the best way to cut health costs is to 'control' the pharmaceutical industry. Here's what a German Pharmaceutical Manufacturer has to say on the subject:

Last year, the "pharmacy of the world," as Germany used to be known, reported its first-ever negative export-import ratio. In the meantime, the government has realized that of the seven pharmaceutical firms previously doing R&D work in Germany, only four remain. . .it is alarming that only ten of the world's 185 industry research centers are now located in Germany. This is symptomatic of the situation throughout Europe, where 20 research centers have been closed down over the past six years."

Please, please go read the whole thing. To find a cure for Huntington's Disease we need medical research to thrive.

Posted by Dave at 08:01 PM | Comments (0) | TrackBack

Is Edwards Anti-Health Care?

I'm not sure what to make of this...

But it is pertinent to the discussion. Medpundit has piece on John Edwards who made much of his millions from suing the medical profession and his alleged "belligerent attitude toward the medical profession." One unattributed quote:

"He sued nurses, doctors, hospitals. The reputation he had was -- he never wanted to hear that nobody did anything wrong. If you even walked by the door of an alleged malpractice incident, you were gong to cough up money too,"

Read the whole thing here.

Update:

RangleMD also posts on this story about Edwards and how he earned his money. The good doctor does NOT mince words. Two particular points he made:

#1. Manipulating the system for the benefit of a hand picked few does not mean that you are a defender of the poor and downtrodden.

#2. Attacking and exploiting important sectors of our society such as health care and insurance for the benefit of a small subset of the population is bound to have bad, unintended consequences that will affect everyone.

Definitely worth a read...go here for the whole story.

Posted by Dave at 07:47 PM | Comments (0) | TrackBack

January 20, 2004

This Could Be Short

Much like the Dateline story, I've decided to blog the President's speech as it happens. In keeping with the non-partisan nature of this blog I'll just comment on anything that relates to our community. Hence the..."This Could Be Short".

Starting off...it's weird seeing commentators saying things such as "the President will probably be talking about...". The networks have already had the written version of the speech for over two hours. They've already read it!

The start of the speech has been largely devoted to national security. I suppose this is to be expected as it is the biggest issue of the day.

One thought struck me just now. It is a misleading statement but it makes a point..."More American's died last year from Huntington's than died from terrorism."

We're now a half hour into the speech and the speech has been almost 100% on national security. The Whitehouse said this would be about a 43-minute speech.

Well...we've move off of national security but nothing about health care quality.

Well...we're 40 minutes into the speech and, after a string of excellent speeches (from a technical standpoint), this is his worst one in years. I still haven't heard anything on health care quality.

We're finally seeing something on medicare...

Bush is touting the benefits from the Medicare bill. Granted, it's an improvement (not a miracle). He's now asking for premiums for Catastrophic Health Care be 100% tax deductable.

After touting the changes from the past year it looks like there there is little else new that he is promoting. What he's done with reorganizing NIH and the Medicaid bill benefits are a big help to our community. I do, of course, wish he had proposed more.

Ok, this is pandering. Now he is calling for addressing steroids in pro-sports. Any knowledgeable doctor will tell you this is, at best, a minor issue. Big whoop. Huntington's kills more in a week than steroids has killed so far this century (no that is not a typo).

Just checked the clock...looks like the 43 minute speech time estimate is a bit short.

Looks like I'm not the only Colorado Blogger who is covering the speech live. Vodka Pundit is following this on his website.

Speech just ended at around 51 minutes. Not much new for the HD community.

Synopis...He's done quite a bit to help the HD community with his policies but there was little new in his speech.

Posted by Dave at 07:09 PM | Comments (0) | TrackBack

State Of The Union Address

The President will be speaking in a few minutes with his annual "State of the Union" address. The press is billing this as the first of the major campaign speeches Bush will be making. Early reports seem to indicate that he will mention health care. Let's hope it has something to do with improving care and not just cutting costs. Stay tuned...

Posted by Dave at 06:57 PM | Comments (0) | TrackBack

Boosting Medicare

This is good news. For the last few years the government has been underpaying Medicare providers, causing them to reduce services and even drop coverage for over two million seniors. Now the Bush administration has significantly boosted payments to the Medicare providers. Quote from the article:

"Tommy G. Thompson, the secretary of health and human services, described the increased payments as "an investment in our seniors." As a result of the increase, Mr. Thompson said, Medicare beneficiaries will have more options and better services.

Private plans will be able to use the additional money to enhance benefits, to reduce premiums or co-payments paid by beneficiaries, or, as a way of stabilizing the network of health care providers who serve the beneficiaries, to increase payments to doctors and hospitals."

Read the whole thing here.

Posted by Dave at 09:18 AM | Comments (0) | TrackBack

January 19, 2004

More On Trehalose

It looks like Cargill is willing to take advantage of the positive HD news regarding Trehalose - the sugar that seemed to help counter Huntingtons.

Here's a little more information on Trehalose as reported by foodnavigator.com:

The sugar is already known to be safe, so the next step is to test it on human patients, says Nukina. But he cautions that clinical trials are needed to assess it before anyone attempts self-treatment.

Found naturally - in honey and mushrooms, for example - the commercial product is made from cornstarch by an enzymatic process.


According to Cargill, this non-reducing sugar, that is 45 per cent as sweet as sucrose, has similar functional properties to sucrose and can be used in combination with sucrose and other bulk sweeteners to optimise sweetness.

As with other sugars, the sweetener can be used without restriction in a range of food products including beverages, chocolate and sugar confectionery, bakery products, frozen foods, breakfast cereals and dairy products. Because it is fully caloric and metabolised to glucose, trehalose is ripe for targetting at product formulations that provide sustained energy - notably, sports nutrition.

Read the whole article here.

Posted by Dave at 08:45 PM | Comments (0) | TrackBack

Gephardt Gone

Gephardt finished a poor fouth in Iowa and the press is reporting that he'll bow out of the race. In tonight's caucuses in Iowa: Kerry was first, Edwards was second, and Dean came in third. Of those, Dean has the best health care policies for Huntington's Disease. This was a poor showing for Dean, considering expectations, but he is still raising a ton of money. He will continue to be formidable. Now the fight moves to New Hampshire where Clark & Lieberman have been campaigning heavily.

Update: That was fast...Gephardt just officially dropped out. He'll make it official tomorrow. With poor fundraising and poor results in Iowa he really didn't have a choice.

Posted by Dave at 08:39 PM | Comments (0) | TrackBack

Al Sharpton

Party Affiliation: Democrat
Official Website: http://www.al2004.org
Official Candidate Blog: No

Website Information Relating To Medical Research: No

Website Information Relating To Health Care: Sort of

Website Analysis: I wish I could say we've saved the best for last but...

Al Sharpton's sole contribution to the important health care debate is to pass a constitutional amendment saying that health care is a "right".

Al, Al, Al...people are dying here. Let's get serious about health care, ok?

Posted by Dave at 06:12 AM | Comments (0) | TrackBack

January 18, 2004

Sugar For HD?

Well...sort of.

Researcher's in Japan found that a sugar called trehalose was effective against Huntington's in both the test tube and a mouse model. The mice had 40% less protein aggregates when given this sugar.

Trehalose is a natural and safe food additive. Here's an excerpt from the journal 'Nature':

Nukina thinks that the sugar works by getting into nerve cells, where it prevents the Huntingtin protein from forming aggregates. But there's no evidence that trehalose even makes it to the brain, counters trehalose researcher Fred Levine from the University of California, San Diego. The next step would be to prove this.

The sugar may be working in other ways. Some think that Huntington's disease occurs when the cellular powerhouses known as mitochondria pack up. Trehalose might act as an energy source for human cells, speculates Truant. Drugs that boost cellular energy are already known to be effective in mouse models of Huntington's disease, so trehalose may work in the same way.

You can read the whole article here.

Posted by Dave at 08:56 PM | Comments (0) | TrackBack

The Nicest People

"The Huntington's people are the nicest people."

That's what I heard a long-term care worker said last week about those in the Huntington's community. She had studied long-term facilities that specialize in helping those with Huntington's Disease so she knew what she was talking about.

I agree, that's been my experience also. I've met some of the most loving and caring individuals at support group meetings and HD fundraisers. This article on Henry Boettner provides another example of the quality individuals in our community. An excerpt:

Wendy recalled her father caring for his own four children while her mother, Gladys, suffered from Huntington's chorea, a disease of the central nervous system. Gladys now lives at Stephenson Nursing Center.

"My dad goes out every day to feed her," Wendy said.

He also delivers food to senior citizens through Meals on Wheels, of which he has been a volunteer for 12 years.

"It's something I enjoy doing," Boettner said. "It's a great thing to do as you get older."

Wendy's proud of all the time and hard work her father devotes to improve Freeport and the lives of his grandchildren.

"I think he gives a lot to the community in general," she said.

Posted by Dave at 09:55 AM | Comments (0) | TrackBack

Joe Lieberman

Party Affiliation: Democrat
Official Website: http://www.joe2004.com
Official Candidate Blog: Yes

Website Information Relating To Medical Research: Yes

Website Information Relating To Health Care: Yes

Website Analysis: Lieberman shows depth in his understanding of health care issues that I haven't seen from many of the other candidates.

It was refreshing to him discuss a goal of reducing medical errors. A focus on that is bound to save lives. He has ideas for speeding up the delivery of new treatments (American Center for Cures) and to get results from research done by NIH & the NSF. His reimportation plan will hurt private investment into medical treatments but less so than some of the other candidates' plans. He's also for mental health parity. He's not a lightweight on this issue.

CONTACT INFORMATION:

ARLINGTON, VA HEADQUARTERS
P.O. Box 967
Arlington, VA 22216
Phone (703) 894-2004
Fax (703) 894-0770

CONNECTICUT HEADQUARTERS
111 Founders Plaza
10th Floor
East Hartford, CT 06108
Phone: (860) 282-VOTE (8683)
Fax: (860) 289-4JOE (4563)

Posted by Dave at 09:15 AM | Comments (0) | TrackBack

January 17, 2004

Candidates Discussing Health Care

From the New York Times:

"Bill McInturff, a Republican pollster, said one of his surveys last month found that "affordable health care" ranked second, just below the economy and jobs, and above terrorism and national security, when voters were asked to list their most important issues. It is particularly important among women, Mr. McInturff said.

"The Democratic debate over health care is inextricably linked to the debate over Mr. Bush's tax cuts, with most of the candidates advocating using at least part of that money to finance their health care plans. Mr. Gephardt and Dr. Dean have proposed repealing all of the Bush tax cuts, including those for the middle class, and redirecting the money toward health care. (Dr. Dean, whose health plan is less expansive than Mr. Gephardt's, would also use some of the Bush tax money for deficit reduction and other areas.)

"Their support for total repeal has drawn increasing fire from several of their rivals, who say it would be unfair to eliminate the tax cuts for the middle class. But Mr. Gephardt has argued in recent days that his health plan is a better way "to put more money on the kitchen table of middle-class families," stimulating the economy, lowering employees' premiums and providing, for the first time, true health care security."

Editor's Note: There is a BIG difference between "affordable" and "improved". We want MORE care and NEW treatments for Huntington's Disease, this runs counter to the details in many so-called "affordable" health care plans.

Update: RangelMD has an interesting take on the candidates health care positions. Worth a visit.

Posted by Dave at 12:38 PM | Comments (0) | TrackBack

Dennis Kucinich

Party Affiliation: Democrat
Official Website: http://www.kucinich.us/
Official Candidate Blog: No

Website Information Relating To Medical Research: No

Website Information Relating To Health Care: Yes

Website Analysis: When it comes to research, Kucinich doesn't have anything to offer. He has nothing about funding NIH and his plan to establish extreme price controls on the pharmaceutical industry would destroy private research, especially for rare diseases.

His health care plan sounds wonderful at first glance...the goverment pays for everything - no premiums, deductables, or co-pays. What he's proposing is very similar to what England tried several decades ago and nearly destoyed health care. The resulting plan created a huge surge in use that outstripped the government's ability to finance.

This lead to severe shortages and much lower quality health care. Many people died while on waiting lists. To deal with the health care disaster, England eventually reformed the health care system to allow individuals to purchase private insurance and go to providers outside of the government system. Health care is still worse than that in the United States.

CONTACT INFORMATION:

Kucinich for President
11808 Lorain Ave. 1st floor.
Cleveland, OH 44111
Local phone: (216) 889-2004
Toll-Free: (866) 413-3664 or
(866) 4-1-DENNIS Fax: (216) 251-5974

Posted by Dave at 08:46 AM | Comments (1) | TrackBack

January 16, 2004

John Kerry

Party Affiliation: Democrat
Official Website: http://www.johnkerry.com
Official Candidate Blog: Yes

Website Information Relating To Medical Research: No

Website Information Relating To Health Care: Yes

Website Analysis: I'm disappointed. I thought Gephardt was bad, but Kerry isn't much better. He's "phoning it in" when it comes to health care. His "research" statement really says nothing of substance. He is for mental health parity so he's a step up from Gephardt, but not by much.

I see nothing that will help medical research, whether it is by the private sector or funded by the government. I'm probably spoiled by what I found on the Dean and the Bush websites, but this is really disappointing. He offers a 100-day plan for those issues most important to him...none relate to health care. He don't get it either!

CONTACT INFORMATION:

National Headquarters
John Kerry for President, Inc.
519 C Street, NE
Washington, DC 20002
202-548-6800
202-548-6801 (fax)

info@johnkerry.com

Posted by Dave at 07:51 PM | Comments (0) | TrackBack

Dick Gephardt

Party Affiliation: Democrat
Official Website: http://www.dickgephardt2004.com
Official Candidate Blog: No

Website Information Relating To Medical Research: No

Website Information Relating To Health Care: Yes

Website Analysis: So far this is the biggest surprise so far in reviewing the websites. Gephardt has campaigned before, has an understanding of how to campaign, and has a lot of experience as a congressman. But...from a health care perspective he's a big disappointment and I'm really surprised by this. You know you're in trouble when he keeps referring to the economic benefits of his health care plan!

The website is less intuitive than some of the other websites. When you visit the health care related pages it is too-little substance and too-much of "my opponents are doing this". I found nothing on research, nothing on genetic discrimination, nothing on mental health equity, nothing on mental health parity,...nothing, nothing, nothing. He doesn't get it!

I'm sorry to say this to those who are fans but...there is nothing here to make me think he even has a clue about the real world and health care issues...let alone those of us in the HD community are concerned about.

CONTACT INFORMATION:

National Headquarters

P.O. Box 34607
Washington, DC 20043

202-448-9300 (phone)

202-448-9399 (fax)

info@dickgephardt2004.com

Posted by Dave at 07:29 PM | Comments (0) | TrackBack

January 15, 2004

Long Day

It's been a long day and I've run out of time. I know I promised a presidential candidate health care write up tonight, but I'm postponing it until tomorrow night.

There'll be a double-dip tomorrow with Gephardt and Kerry. See you then!

Posted by Dave at 10:41 PM | Comments (0) | TrackBack

January 14, 2004

Braun Dropping Out

Carol Moseley Braun is dropping out of the race for president and, reportedly, endorsing Howard Dean.

Her policies offered little to the Huntington's Disease community so this is no great loss. This comes as no surprise as she had horrible poll numbers and her fundraising was non-existent.

And then there were eight.

Posted by Dave at 09:48 PM | Comments (0) | TrackBack

John Edwards

Party Affiliation: Democrat
Official Website: http://www.johnedwards2004.com
Official Candidate Blog: Yes

Website Information Relating To Medical Research: No

Website Information Relating To Health Care: Yes

Website Analysis: For a major candidate, there isn't much to offer the Huntington's Disease community. There is nothing about Medical Research, nothing about long-term care, and nothing about about genetic discrimination. Strangely, he even has little on pharmaceutical costs. On the positive side, his 'plan' as light as it is, is more financially realistic than others.

All-in-all, he's offers very little to the our community and he leaves the impression that health care really isn't a high priority for him.

CONTACT INFORMATION:

National Campaign Headquarters:

Edwards for President
PO Box 300034
Raleigh, NC 27622

Phone: (919) 785-1900

E-mail: info@johnedwards2004.com

Posted by Dave at 08:07 PM | Comments (0) | TrackBack

January 13, 2004

Howard Dean

Party Affiliation: Democrat
Official Website: http://www.deanforamerica.com
Official Candidate Blog: Yes

Website Information Relating To Medical Research: Yes

Website Information Relating To Health Care: Yes

Website Analysis: Wow! Dr. Dean (yes, he is a physician) has a ton of information on his website relating to health care. He has more information than any other candidate on health care issues.

So how does he rate? He mentions research. He supports increasing NIH's funding (the largest single spender of Huntington's research). He is one of the rare candidates to mention long-term care. His proposals on long-term-care would both help and raise costs (puts providers out of business). His pharmaceuticals policy which are geared largely toward reducing costs would seriously hurt pharmaceutical research (including a cure for Huntington's Disease). He understands the difference between reproductive and therapeutic cloning.

It's obvious he's put a lot more thought into health care, more than many of the other candidates. If you're concerned about care, he's got a lot to offer. If you're concerned about finding a cure, he's a mixed bag. If you don't worry about either then his plans will definitely raise your taxes.

CONTACT INFORMATION:

Dean For America
P.O. Box 1228
Burlington, Vermont 05402

Phone Contacts:
(802) 651-3200 phone
(802) 651-3299 fax

Posted by Dave at 06:01 PM | Comments (0) | TrackBack

January 12, 2004

Wesley Clark

Party Affiliation: Democrat
Official Website: http://www.clark04.com/
Official Candidate Blog: Yes

Website Information Relating To Medical Research: Yes

Website Information Relating To Health Care: Yes

Website Analysis: The website has a good amount of information, more than many candidate websites. The details are frustrating however as there seems to be a disconnect with reality. One one hand, they talk about how they will reduce costs but then everything that follows will increase heath care spending. Under Clark's plan an additional 32 million people will get insurance coverage paid for by the government. He also says that he will expand coverage benefits, yet keeps mentioning that he'll contrain "cost growth".

The good news for our community is that Clark talks about giving mental health benefits parity to other health benefits. This would be an important benefit to your community since so much care falls under "mental health".

Clark's comments on research are limited to expanding the number of cell lines that can be used in government funded stem cell research. His ideas for reducing pharmaceutical costs would reduce the amount of money that ends up in Huntington's Disease research. Other than that he makes a lot of promises that, if there was some way he could pay for it, would improve health coverage. He has a lot of information on one of the best funded diseases, AIDS/HIV, but I don't see anything on rare/orphan diseases.

CONTACT INFORMATION:

Clark for President
P.O. Box 2959
Little Rock, AR 72203
Phone: (501) 537-2004
Fax: (501) 244-2203

Posted by Dave at 06:29 PM | Comments (0) | TrackBack

January 11, 2004

George W. Bush

Party Affiliation: Republican
Official Website: http://www.georgewbush.com/
Official Candidate Blog: Yes

Website Information Relating To Medical Research: Yes

Website Information Relating To Health Care: Yes

Website Analysis: This website has lots of good detailed information on health care issues. The other candidates would be smart to follow this example for detail.

The website does have section on medical research, though small. Main point is increasing funding to the National Institutes of Health (NIH). NIH is largest single source of funding for Huntington's Disease related research in the world.

Of the many health care items, the one of particular interest to the Huntington's Disease community is a statement supporting the passage of the "Genetic Discrimination Bill" which would allow insurance companies and employers from discriminating against those who have or are at risk of a genetic disease. (This bill is currently stalled in the House.)

Overall focus appears to be on "modernizing" the health care system, improving access to health care, disease prevention, and developing new treatments.

CONTACT INFORMATION:

Mailing Address:
BUSH-CHENEY '04, Inc.
P.O. BOX 10648
Arlington, VA 22210

Phone Numbers:
Phone: 703.647.2700
Fax: 703.647.2993

Email Address:
BushCheney04@GeorgeWBush.com

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January 10, 2004

HD Blog's Political Season Starts

It's time, the presidential primaries start January 19th with the Iowa caucuses. As an aid to voters, the HD Blog will be reporting on the candidates from now until the election on November 2nd.

The HD Blog is not a political blog, it's a health care blog focused on Huntington's Disease. As such, we'll be focusing on the political news as it affects the Huntington's Disease community. The media in general will be focusing on the hot topics of the campaign such as the war on terrorism, the Iraq war, the economy, imigration, and the usual petty politics.

It's not likely that the focus this year will be on health care, thereby making it difficult for voters in our community to make an informed voting decision regarding a candidate's health care positions.

So what positions can candidate's take that would help the Huntington's Disease community?

Broadly, a candidate can help our community in two ways: by improving the environment for medical research and by improving the care of those with Huntington's Disease. It's not going to be enough for a candidate to "pro-health care". Some "health care" proposals would hurt the research environment and would lower the levels of care for those with Huntington's Disease.

Between now and January 19th, the HD Blog will be posting introductory features, in alphabetical order, on each of the major candidates. Here's the schedule:

January 10 - Ambassador Carol Moseley Braun
January 11 - President George Bush
January 12 - General Wesley Clark (Ret.)
January 13 - Governor Howard Dean
January 14 - Senator John Edwards
January 15 - Congressman Dick Gephardt
January 16 - Senator John Kerry
January 17 - Congressman Dennis Kucinich
January 18 - Senator Joe Lieberman
January 19 - Reverend Al Sharpton

Stay tuned and feel free to throw in your comments at any time. Just be polite and courteous. Any comments that violate these simple principles (or are blatant ads) will be deleted. It's going to be a vicious and ugly campaign season, there is no reason it has to be that way here.

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Carol Moseley Braun

Party Affiliation: Democrat
Official Website: http://www.carolforpresident.com
Official Candidate Blog: None

Website Information Relating To Medical Research: None

Website Information Relating To Health Care: Yes

Website Analysis: She appears to have no policies relating to medical research. There is quite a bit of verbage on health care, but very few details. The one big point she makes is she is for a single-payer (nationalized) health care system. She believes this will reduce medical costs. These plans have historically cut spending and care on incurable diseases such as Huntington's Disease.

CONTACT INFORMATION:

Carol for President
National Campaign Office
2907 S. Wabash
(Corner of Michigan Avenue & 29th Street)
Chicago, Illinois

Mailing Address:
Carol for President
P.O. Box 16560
Chicago, Illinois 60616-0560
Telephone: 312-842-8500
Fax: 312-842-8510

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Ciliary Neurotrophic Factor

Last month I wrote here about exciting news from Huntington's Disease researchers and their promising work in gene therapy.

Well, the BBC has written an excellent article on the initiative geared at improving the production of Ciliary Neurotrophic Factor's in the brain. Here are the highlights:

A brain chemical has been found that could improve the lives of people with Huntington's disease, scientists say.

Mice tailored to develop the degenerative brain disease had fewer symptoms and declined at a slower rate when given Ciliary Neurotrophic Factor.

A UK team is now working to produce a tablet that has a similar effect.

"The research, published in the journal Experimental Neurology, is further evidence that the lack of certain "neurotrophic factors" are key to the progressive symptoms of Huntington's."

"However, more recent research has pinpointed what the gene, and its mutated Huntington's version, actually do".

"Identifying the importance of neurotrophic factors in keeping the brain healthy has allowed scientists to work on producing ways of keeping the disease in check."

"Experts from Bristol University are working to identify molecules that will bind to the same "receptors" on the surface of brain cells as the neurotrophic factors. "

"Hopefully we can find compounds that are equally effective."

Read the whole article here.

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January 09, 2004

Rather See Us Die

The animal "rights' groups are at it again...doing what they can to hinder researchers trying to cure Huntington's Disease.

The very prestigious Cambridge University is trying to open a laboratory to research brain diseases such as Huntington's Disease and Parkinson's Disease. They got the district council and the government inspector to turn down the laboratory. However, the Deputy Prime Minister had the courage to overide those votes and approve the much-needed research facility.

Now the anti-human protesters will be protesting tomorrow and working on plans to disrupt the university. One quote by one of their leaders:

"Plans are already in place to implement measures that will significantly reduce the effective working of the university..."

And this lovely quote:

"We will not allow academic arrogance and greed to be the blueprint for the future of research in this country"

Talk about arrogance! See the whole story here.

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January 08, 2004

Lithium May Protect Those With HD

A study was commissioned by the National Institutes of Health to determine if Lithium is will help protect the brain of those with Huntington's Disease.

In a nutshell...it might be a big help! And it appears to help in two ways, by preventing cell death and promoting new cells. Lets hope this spurs more research.

If your doctor prescribes this for you...that is probably a very good thing! Here's the abstract:

Mol Psychiatry. 2003 Dec 31

Short-term lithium treatment promotes neuronal survival and proliferation in rat striatum infused with quinolinic acid, an excitotoxic model of Huntington's disease.

Senatorov VV, Ren M, Kanai H, Wei H, Chuang DM.

1Molecular Neurobiology Section, National Institute of Mental Health, National Institutes of Health, Bethesda, MD, USA.

We assessed the ability of lithium to reduce neurodegeneration and to stimulate cell proliferation in a rat model of Huntington's disease in which quinolinic acid (QA) was unilaterally infused into the striatum. LiCl (0.5-3.0 mEq/kg) was injected subcutaneously 24 h before and 1 h after QA infusion. At 7 days after QA injection, lithium significantly diminished the loss of neurons immunostained for Neuronal Nuclei (NeuN) in the injured striatum, but failed to prevent the reduction of NADPH-diaphorase-positive striatal interneurons. Lithium also reduced the number of neurons showing DNA damage or activated caspase-3. This neuroprotection was associated with an upregulation of Bcl-2 protein levels in the striatal tissue and an increase in the number and density of Bcl-2 immunostaining in striatal neurons. Bromodeoxyuridinie (BrdU) labeling in the lithium-treated injured striatum revealed the presence of large numbers of proliferating cells near the QA-injection site, with a reduction of BrdU-labeled cells in the subventricular zone (SVZ). All BrdU-labeled cells in the SVZ and the majority of BrdU-labeled cells near the QA-injection site were negative for either NeuN or glial fibrillary acidic protein (GFAP), suggesting that they are undifferentiated progenitor cells. However, a small number of BrdU-positive cells found in the QA-injected and lithium-treated striatum site were positive for either NeuN or GFAP. Our results suggest that lithium is neuroprotective in the QA-injection model of Huntington's disease not only due to its ability to inhibit apoptosis but also because it can stimulate neuronal and astroglial progenitor proliferation in the QA-injected striatum or their migration from the SVZ.Molecular Psychiatry advance online publication, 31 December 2003; doi:10.1038/sj.mp.4001463

PMID: 14702090

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What Does It Do?

We all know that a genetically misformed Huntingtin protein is the cause of Huntington's Disease. This begs the question..."What does a normal Huntingtin protein do?"

Research has been trying to solve that question and the answers they find may not only solve Huntington's Disease, but may also provide key clues to combating many other disease and even aging itself.

A study just published in Molecular Neurobiology reveals some clues to the usefulness of the Huntingtin protein...

It's essential for the development of an embryo.

It plays an important role in the development of the brain.

It's involved in keeping brain cells alive.

So what does the 'bad' huntingtin protein do? Well, it not only doesn't provide the needed functions the needs but it also seems to do harm to brain cells. For years, scientists have argued over whether HD causes problems because it can't do what it is supposed to do (loss of function) or it causes problems because it actively does something to damage the brain (gain of function).

It appears they are both right. Here's the abstract:

Mol Neurobiol. 2003 Dec;28(3):259-76.

Wild-type huntingtin plays a role in brain development and neuronal survival.

Reiner A, Dragatsis I, Zeitlin S, Goldowitz D.

Department of Anatomy and Neurobiology, College of Medicine, The University of Tennessee, The Health Science Center, Memphis, TN 38163.

While the role of the mutated Huntington's disease (HD) protein in the pathogenesis of HD has been the focus of intensive investigation, the normal protein has received less attention. Nonetheless, the wild-type HD protein appears to be essential for embryogenesis, since deletion of the HD gene in mice results in early embryonic lethality. This early lethality is due to a critical role the HD protein, called huntingtin (Htt), plays in extraembryonic membrane function, presumably in vesicular transport of nutrients. Studies of mutant mice expressing low levels of Htt and of chimeric mice generated by blastocyst injection of Hdh-/- embryonic stem cells show that wildtype Htt plays an important role later in development as well, specifically in forebrain formation. Moreover, various lines of study suggest that normal Htt is also critical for survival of neurons in the adult forebrain. The observation that Htt plays its key developmental and survival roles in those brain areas most affected in HD raises the possibility that a subtle loss of function on the part of the mutant protein or a sequestering of wild-type Htt by mutant Htt may contribute to HD pathogenesis. Regardless of whether this is so, the prosurvival role of Htt suggests that HD therapies that block production of both wild-type and mutant Htt may themselves be harmful.

PMID: 14709789

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January 07, 2004

Doctor Dean

Dr./Governor Howard Dean has a strong supporter writing into Andrew Sullivan. An excerpt:

"I've known Dean for 20 years, he was my doctor and my father's doctor when my father had terminal cancer, and anger certainly isn't his driving force. Sure, he's tough and abrupt sometimes but I can assure that he is a perfectly decent likeable fellow, perhaps just a little on the energetic side! But there is also something deeper, much deeper that was on display when he was a doctor. If he can bring to the presidency his capacity that I saw to look at facts (my father's medical condition, for example) and draw difficult conclusions (my father's terminal condition) and then communicate his findings in the same supportive and, dare I say, inspiring way he did as a doctor then he will bring something quite extraordinary to the country."

Read the whole thing here.

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Those Dumb Spammers...

One of the downsides of running a blog is that some spammers use automated software to post their ads in the comment section.

Just today I got hit with another round of spam which I quickly deleted. I decided to visit their website and would you believe....

there was absolutely no way to actually purchase what they were selling. The bought a domain name, setup a nice looking website, purchased and ran software that spammed thousands of websites and they forgot to include a way for people to actually give them money!!!

Makes you wonder if they'd forget to send the product even if they thought to collect the money!

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January 06, 2004

A Doctor's Life

We sometimes forget that Doctor's are human also. They have a lot of pressure coming from a lot of different sources.

Medpundit has this piece, taken from the Washington Post, about a young struggling cardiologist who eventually closed his practice.

I highly recommend the piece, click here and scroll down to "Anatomy Of A Practice".

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January 05, 2004

Your Mileage May Vary

"Usually it takes six weeks for antidepressants to work. I developed a new appreciation for patients who quietly and calmly suffer, waiting for their meds to kick in. I was terrified that I might feel worse if I stopped the bupropion or changed drugs."

There is no one anti-depressant that works for everybody, with or without HD. Thankfully, we now have so many options that most people can usually find one that is effective.

Here a very interesting article from the New York Times on one doctor's experience with bupropion (Wellbutrin). Wellbutrin is an excellent choice for many people, especially those who don't do well with Paxil. In the case of this doctor, her side effects were significant and she had to stop taking it. She was one of the 10% who had a problem. Her experience has affected how she prescribes anti-depressants.

The key lesson...find the right medication for "you". What works for one person may be bad for another.

Hat tip to DB's Med Rants for the link!

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Mirror Molecules

From an article in the New Zealand Herald on the current state of scientific research comes this comment:

"Auckland University doctors, for example, hope to create a drug which exactly "mirrors" a molecule that transmits messages from a gene in patients with Huntington's disease, causing their bodies to produce toxic proteins which kill their brain cells. The "mirror molecule" may be able to block the messages."

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January 04, 2004

HD Blog Depression Series

Since the start of this blog I've written several times about the importance of managing depression in the Huntington's Disease community. Most recently it was in discussing the tragedy of Carol Carr and her family.

Depression symptoms are at the core of the "softer sides" of Huntington's Disease. Properly managing the disease of depression (yes, it is a disease) can give a person with Huntington's more years of happiness, employment, and productivity. In many cases, management of depression is the difference between being able to be cared for at home or having to be put into a full-time care facility.

Depression not just an issue for pHD's (person's with Huntington's Disease), it hits caregivers very hard also. The long hours and the many stresses too often leaves the caregiver barely clinging to the "end of their rope". Caregivers become so focused on taking care of their charges that they fail to see their own needs.

Depression robs individuals and families of enjoyment of life. It's the difference between "surviving" life and "living" life. It is also a leading killer in our community. It's been reported that those with Huntington's are 8-12 times more likely to commit suicide.

A leading, but underreported, symptom of depression is 'Anger' and 'Irritability'. That is why so many families report an improved homelife when their loved ones receive proper treatment for their depression.

A potential bonus for those who have Huntington's is, in the belief of many in the medical community, that anti-depressants may actually help protect the brain cells from damage.

The HD Blog series on depression is taken, almost word for word, from the National Institutes of Health booklet on depression. If you do not wish to read the entire series, be sure to at least check out these topics:

Symptoms of Depression and Mania

Helping Yourself with Depression

Helping Others with Depression

Getting Help for Depression

Here are the links to the entire series:

HD Blog Series on Depression
Introduction to Depression
What is a Depressive Disorder?
Types of Depression
Symptoms of Depression & Mania
Causes of Depression
Depression in Women
Depression in Men
Depression in the Elderly
Depression in Children
Evaluation and Treatment of Depression
Medications for Depression
Side Effects of Depression
Herbal Therapy for Depression
Psychotherapy for Depression
Helping Yourself with Depression
Helping Others with Depression
Getting Help for Depression
Depression References

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Introduction To Depression

In any given 1-year period, 9.5 percent of the population, or about 18.8 million American adults, suffer from a depressive illness.5 The economic cost for this disorder is high, but the cost in human suffering cannot be estimated.

Depressive illnesses often interfere with normal functioning and cause pain and suffering not only to those who have a disorder, but also to those who care about them. Serious depression can destroy family life as well as the life of the ill person. But much of this suffering is unnecessary.

Most people with a depressive illness do not seek treatment, although the great majority-even those whose depression is extremely severe-can be helped. Thanks to years of fruitful research, there are now medications and psychosocial therapies such as cognitive/behavioral, "talk," or interpersonal that ease the pain of depression.

Unfortunately, many people do not recognize that depression is a treatable illness. If you feel that you or someone you care about is one of the many undiagnosed depressed people in this country, the information presented here may help you take the steps that may save your own or someone else's life.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
HD Blog Series on Depression
Introduction to Depression
What is a Depressive Disorder?
Types of Depression
Symptoms of Depression & Mania
Causes of Depression
Depression in Women
Depression in Men
Depression in the Elderly
Depression in Children
Evaluation and Treatment of Depression
Medications for Depression
Side Effects of Depression
Herbal Therapy for Depression
Psychotherapy for Depression
Helping Yourself with Depression
Helping Others with Depression
Getting Help for Depression
Depression References

This information on depression is adapted from a new version of the 1994 edition of Plain Talk About Depression and was written by Margaret Strock, Information Resources and Inquiries Branch, Office of Communications, National Institute of Mental Health (NIMH). Expert assistance was provided by Raymond DePaulo, MD, Johns Hopkins School of Medicine; Ellen Frank, MD, University of Pittsburgh School of Medicine; Jerrold F. Rosenbaum, MD, Massachusetts General Hospital; Matthew V. Rudorfer, MD, and Clarissa K. Wittenberg, NIMH staff members. Lisa D. Alberts, NIMH staff member, provided editorial assistance.

This original version of this publication is in the public domain and may be used and reprinted without permission. Citation as to source is appreciated.

NIH Publication No. 00-3561
Printed 2000
Updated: August 07, 2003

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What is a Depressive Disorder?

A depressive disorder is an illness that involves the body, mood, and thoughts. It affects the way a person eats and sleeps, the way one feels about oneself, and the way one thinks about things. A depressive disorder is not the same as a passing blue mood. It is not a sign of personal weakness or a condition that can be willed or wished away. People with a depressive illness cannot merely "pull themselves together" and get better. Without treatment, symptoms can last for weeks, months, or years. Appropriate treatment, however, can help most people who suffer from depression.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
HD Blog Series on Depression
Introduction to Depression
What is a Depressive Disorder?
Types of Depression
Symptoms of Depression & Mania
Causes of Depression
Depression in Women
Depression in Men
Depression in the Elderly
Depression in Children
Evaluation and Treatment of Depression
Medications for Depression
Side Effects of Depression
Herbal Therapy for Depression
Psychotherapy for Depression
Helping Yourself with Depression
Helping Others with Depression
Getting Help for Depression
Depression References

This information on depression is adapted from a new version of the 1994 edition of Plain Talk About Depression and was written by Margaret Strock, Information Resources and Inquiries Branch, Office of Communications, National Institute of Mental Health (NIMH). Expert assistance was provided by Raymond DePaulo, MD, Johns Hopkins School of Medicine; Ellen Frank, MD, University of Pittsburgh School of Medicine; Jerrold F. Rosenbaum, MD, Massachusetts General Hospital; Matthew V. Rudorfer, MD, and Clarissa K. Wittenberg, NIMH staff members. Lisa D. Alberts, NIMH staff member, provided editorial assistance.

This original version of this publication is in the public domain and may be used and reprinted without permission. Citation as to source is appreciated.

NIH Publication No. 00-3561
Printed 2000
Updated: August 07, 2003

Posted by Dave at 09:16 AM | Comments (0) | TrackBack

Types of Depression

Depressive disorders come in different forms, just as is the case with other illnesses such as heart disease. This pamphlet briefly describes three of the most common types of depressive disorders. However, within these types there are variations in the number of symptoms, their severity, and persistence.

Major depression is manifested by a combination of symptoms (see symptom list) that interfere with the ability to work, study, sleep, eat, and enjoy once pleasurable activities. Such a disabling episode of depression may occur only once but more commonly occurs several times in a lifetime.

A less severe type of depression, dysthymia, involves long-term, chronic symptoms that do not disable, but keep one from functioning well or from feeling good. Many people with dysthymia also experience major depressive episodes at some time in their lives.

Another type of depression is bipolar disorder, also called manic-depressive illness. Not nearly as prevalent as other forms of depressive disorders, bipolar disorder is characterized by cycling mood changes: severe highs (mania) and lows (depression). Sometimes the mood switches are dramatic and rapid, but most often they are gradual. When in the depressed cycle, an individual can have any or all of the symptoms of a depressive disorder. When in the manic cycle, the individual may be overactive, overtalkative, and have a great deal of energy. Mania often affects thinking, judgment, and social behavior in ways that cause serious problems and embarrassment. For example, the individual in a manic phase may feel elated, full of grand schemes that might range from unwise business decisions to romantic sprees. Mania, left untreated, may worsen to a psychotic state.

* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
HD Blog Series on Depression
Introduction to Depression
What is a Depressive Disorder?
Types of Depression
Symptoms of Depression & Mania
Causes of Depression
Depression in Women
Depression in Men
Depression in the Elderly
Depression in Children
Evaluation and Treatment of Depression
Medications for Depression
Side Effects of Depression
Herbal Therapy for Depression
Psychotherapy for Depression
Helping Yourself with Depression
Helping Others with Depression
Getting Help for Depression
Depression References

This information on depression is adapted from a new