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March 31, 2005
Terri Schiavo - R.I.P.
Have you made arrangements to get a living will?
Whatever your decisions are regarding end-of-life care, the Terri Schiavo fiasco provides strong motivation for getting a living will.
I've been following the case these last couple of weeks and have been researching the various issues, including legal and medical. I can tell you that much of what you heard was wrong. We heard medical 'experts' giving opinions without all the facts, legal experts giving opinions without reading all the transcripts, political experts that didn't read bill, etc.
Add in all that is unknown and you end up with this mess. If Terri Schiavo had a living will, we never would have heard of her (she was one of an estimated 10,000 people in this country who are in some sort of vegetative state).
See a lawyer, get your living will.
Posted by Dave at 08:41 PM | Comments (0) | TrackBack
March 17, 2005
Time For A Refresher - Shark Cell / Live Cell Therapy
Looks like the topic of Live Cell Therapy is 'hot' again in our community. Let me put this as clearly as possible...
The 'doctors' that are pushing Live Cell Therapy are con artists sucking money out of dying patients.
Not only is it a waste of time and money, it is dangerous. Here are two previous articles on the subject with more detail - Here and Here.
For those who want to take every step possible to save the health and lives of those with Huntington's Disease I recommend you work with a real doctor and pursue the many promising avenues that real research is identifying such as...exercise, creatine, fish oil, HDAC inhibitors, minocycline & some other antibiotics, coQ10, trehalose, cystamine, TUDCA, & more. Go to HDDrugWorks.org and go into their trials.
There are good and valid options out there. Don't donate your hard earned money to con artists.
Posted by Dave at 07:49 AM | Comments (1) | TrackBack
March 16, 2005
Cuba Not A Health Care Paradise
Cuba has been touting its supposedly superior health care system in a long standing propaganda effort. A few years ago they exported a number of 'doctors' to Venezuela as part of this effort. As you may know, Lake Maracaibo in Venequela has a huge concentration of families with Huntington's Disease.
So how good is Cuba's health care? Check this link out for yourself and you can see conditions at one of their 'top' hospitals. Yes, those are cockroaches.
There is also serious concern about the quality of their doctors, but I'll post on that some other time.
UPDATE: More pictures from the same hospital.
Posted by Dave at 05:43 AM | Comments (0) | TrackBack
March 15, 2005
Good News For Britains
Ministers have struck a deal to extend a moratorium on the use of genetic test results to deny people insurance. ...Dr Reid said: "Choosing to have a predictive genetic test can be life saving, and nobody should be put off having such a test because of fears it will be used against them by insurers.
There's one exception:
The new framework will mean that at present the only people who will have to disclose their test results are those who have undergone a test for Huntington's disease, and who are seeking life insurance cover for more than £500,000.
Yes, they single out Huntington's but only for live insurance exceeding a pretty large sum. That seems fair and reasonable to me.
Posted by Dave at 08:03 AM | Comments (0) | TrackBack
March 14, 2005
Another Marriage
The Bear of the blog 'The Truth Laid Bear' is also getting married and soliciting advice on rings. Congratulations!
Posted by Dave at 08:56 AM | Comments (1) | TrackBack
Engaged!
Hmmm, this blog sure isn't getting updated like it used too!
It'll eventually get back to (near) daily updates, but here's one of the life reasons for the reduced postings...I'm now engaged to be married. I asked my future wife to marry me last Friday night while on a ski trip with her family and preparations leading up to the wonderful event have kept me busy.
The important thing is...she said 'yes'!
It looks like the marriage will be in late July.
Posted by Dave at 05:33 AM | Comments (1) | TrackBack
Talking To Children About HD
Gene's posted another excellent article on being at risk for Huntington's Disease. This time his topic is I've seen very little written on, yet is often discussed in our community - How do handle explaining HD to children in a family that is 'at risk'.
Like all things involving children, there is single, right, and obvious way to handle this delicate situation. From what I can gather, Gene's going to handle it just fine.
For those who are not at risk but are reading his article, notice how the multi-generational aspects of Huntington's Disease affect his everyday life. Not only is he dealing with the specter of possibly getting this disease and he has to worry about his daughter possibly getting the disease (and the inevitable guilty feelings), he also has to deal with watching a loved parent go through the process of the disease. And that ain't easy.
Posted by Dave at 05:15 AM | Comments (0) | TrackBack
March 03, 2005
Financial Decisions & HD
Gene with the At Risk for Huntington's Disease blog has another interesting posting. This time he's discussing how the specter of HD is coloring his financial decisions.
A couple years ago we turned down a chance to co-sign a loan on a very promising business venture because we feared losing our good credit rating. The more my risk for HD approaches the probability of symptoms, the less we expose ourselves to financial risk.Whenever we think of money, the question inevitably rises: “What if HD kicks in?”
“If it weren’t for HD” is a regular part of our vocabulary.
Posted by Dave at 06:15 AM | Comments (0) | TrackBack
March 01, 2005
Huntington's Used In Online Ethical Game
From Deutsche-Welle:
Should insurance companies record a patient's DNA? Should people use medicines that were derived from stem cell research? A new German online game, "gen.ethix," lets users ponder difficult bioethics questions.Lisa and Monika's mother was not yet 50 years old when she was committed to a nursing home. The reason? She had Huntington's Disease, an illness in which the patient increasingly loses control of his or her body and mental faculties. Her two daughters have a 50 percent chance of getting the disease as well, which begs the ethical question: Should they undergo genetic testing for the disease?
This fictional situation is just one of several posed to people who play "gen.ethix." The online game -- only available in a German-language version -- asks players to make decisions on questions of the future of biotechnology.
Posted by Dave at 06:11 AM | Comments (1) | TrackBack