September 28, 2005

Bob Dylan

Some people consider their lives over when they learn they have the gene for Huntington's Disease.

That's a shame because many with the disease have accomplished so much. Last year I wrote about Bert Eymberts, the Redmond,WA firefighter who saved lives for over 20 years and ended up immortalized in a lifesize bronze honoring all firefighters.

Perhaps the best known person with Huntington's Disease was Woodie Guthrie, the folk singer. Aside from his musical legacy, his ex-wife ended up founding the organization that eventually became the largest HD organization in the United States. His son still raises money for HD.

However, it is his musical legacy that is still reverberating through popular music today as this article on Bob Dylan shows.

Dylan first came to New York on a quest to meet his idol Woody Guthrie, the iconic folksinger whose Huntington's disease landed him in a mental hospital. Dylan says no one reached him musically before Guthrie... Guthrie "had a particular sound, and besides that he said something," Dylan recalls. "He was a radical -- (I thought) that's what I want to say. I want to say that."

Bob Dylan is just one of many artists influenced by Guthrie. Dylan's work has influenced Joan Baez, Peter, Paul & Mary, The Rolling Stones, The Byrds, Neil Young, & John Lennon. From MTV:

Bob Dylan's influence on popular music is incalculable. As a songwriter, he pioneered several different schools of pop songwriting, from confessional singer/songwriter to winding, hallucinatory, stream-of-conscious narratives. As a vocalist, he broke down the notions that in order to perform, a singer had to have a conventionally good voice, thereby redefining the role of vocalist in popular music. As a musician, he sparked several genres of pop music, including electrified folk-rock and country-rock. And that just touches on the tip of his achievements. Dylan's force was evident during his height of popularity in the '60s -- the Beatles' shift toward introspective songwriting in the mid-'60s never would have happened without him -- but his influence echoed throughout several subsequent generations. Many of his songs became popular standards, and his best albums were undisputed classics of the rock & roll canon. Dylan's influence throughout folk music was equally powerful, and he marks a pivotal turning point in its 20th century evolution, signifying when the genre moved away from traditional songs and toward personal songwriting. Even when his sales declined in the '80s and '90s, Dylan's presence was calculable.

Martin Scorsese now has a PBS documentary on Bob Dylan called "No Direction Home". The reviews have been outstanding so check it out when you get a chance and think back to the man with HD who inspired him in the beginning.

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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 14, 2005

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.

Check it out.

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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.

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January 11, 2005

New HD Blog

Wow, what a way to start a new HD website...

and this isn't the only HD Blog anymore!

Gene Veritas has started a blog for those living at risk for Huntington's Disease and I highly recommend you go visit it (and don't forget to bookmark it). Here's a sample:

No, I am not angry, I told him. It’s been nine years this December 26 that I learned of my mother’s diagnosis with HD. I have come to accept HD as part of my life.

I think a lot about death, I continued. I don’t know exactly when HD will strike. It could be as early as in the next five years, or it could take twenty years. I’m trying to squeeze as much life into my days as possible before I starting living life as a “vegetable,” I said.

“I envy you,” my friend said. “I feel immortal. I don’t believe I’m going to die. But you know you’re going to die, and so you can live your life more fully.”

You can read all of it at http://www.curehd.blogspot.com/

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January 04, 2005

"...with acceptance came self love"

I hope you make the Huntington's Disease Advocacy Center (www.hdac.org) a regular part of your journey on the web.

Marsha Miller points to another wonderful article, this one by Kelly B. and you can read it here. A excerpt:

For the first year after testing I felt that having HD marked the end of my life. The urge to just curl up and wait for death was tempting, for awhile. Luckily the urge to put to good use the limited days I had left, took over.

One day it just clicked, I believe it was the day that my focus shifted from what I had lost, to what I had left. And I had a whole lot left. Recognizing my "blessings" was the first step to turning things around inside my head. It is hard for the dark thoughts to hang out when you are focusing on positive things.

At the camp I attended last year, Dr. Jess told us that through loss is gain, that the two are entertwined. The loss is the cloud itself and the gain is the silverlinings that exist in all the challenges that life brings us.

Surviving losses can give us inner strength, understanding, compassion, a zest/appreciation for life, and personal growth. Show me a person who has never suffered a loss, and I will show you a person who has not evolved at all. Survivors are a special breed of person...

Finding out why I was the way I was and being diagnosed with HD inspired many brand new beginings for me, after the shock phase had passed and the dust settled. With knowledge came understanding, with understanding came acceptance, and with acceptance came self love.

Posted by Dave at 06:28 AM | Comments (1) | TrackBack

November 23, 2004

Denial

I don't know how HDAC.org does it, but they keep finding wonderful writers who write wonderful articles about the personal side of Huntington's Disease.

They've done it again with an article by Kelly B. on "Denial". Here's one of the many good points:

...I try to take my symptoms in stride. To go with the HD rather than try to fight it saves so much energy. It does not mean that you give in, but instead that you "accept the things you can not change". And get back to the task of really living each day of your life.

Posted by Dave at 06:26 AM | Comments (0) | TrackBack

November 20, 2004

Nancy Wexler & Testing

To those in the HD community listen carefully to what I have to say:

Not everybody in our community is like you. We are each individuals who are wired in our own unique ways. How one person handles Huntington's Disease may not work for another. Let me put it to you this way:

There are two types of HD people - those who deal better by gaining knowledge and those who deal better by not focusing on what they cannot change.

Neither path is wrong. I know of people who've been damaged by the knowledge of their HD status and I've known people who were helped. Ironically, some don't handle well the knowledge of being gene negative and others who lived miserably without knowing their status. I've seen the opposite as well.

Respect the decisions of others, even if it isn't the decision you would have made. They are doing what they believe is right for them - and it may be. Even if it isn't the right decision for you.

Why am I on the soap box and what does this have to do with Nancy Wexler? Well...in the wonderful CBS story on Huntington's Disease Nancy said:

"I know that with me, if I were to go to bed every night thinking I'm going to die of Hungtington's, you know, why should I bother getting up?" says Wexler.

And you know what? She (and her amazing family) have accomplished amazing things in the Huntington's Community. She's advanced HD research by years, if not decades. Her work was critical to the Human Genome project. The more I read about what she has accomplished, the more impressed I become with her drive and devotion.

She made the right choice for her! She leads a wonderfully productive and healthy life. How could it have been improved if she had taken the test for HD? I don't believe it would have.

So to those few who criticize her decision...Let her be, she made the right choice for her. Just as everyone in her position tries to do. And for those who feel that she was criticizing others read her sentence carefully. It starts "I know that with me..." She is talking about herself and nobody else. She is not passing judgement on anyone.

It was the right choice for her. That is what matters.

Posted by Dave at 05:25 AM | Comments (0) | TrackBack

October 22, 2004

"A Dignified End"

We've all seen what the last few years of what Huntington's Disease is like.

A dear friend of mine has cared for her father for many years. He's not bedridden yet, but you know its coming. It's hard for her to see her father fade away. There isn't going to be a 'cure' for him.

What makes it more difficult for her is that she has also tested positive for the HD gene. When she see's her father, she see's her own future. She amazes me. You have to be a strong woman to care for someone as she has for her dad these last few years.

So when I read articles like this one, they make me think. The article is about a woman with Huntington's Disease who is campaigning for an assisted suicide law in England. She saw her grandmother die at age 64, her 56-year-old mother is symptomatic and she has the HD gene. She's 36 and isn't showing any signs of the disease.

I'm worried about her and others I know in similar situations. She believes that if she doesn't commit suicide, she's going to die from Huntington's Disease. I doubt that she will.

So why do I say that? First, she has no symptoms. She's healthy. Second, both her mother and grandmother had a late onset of the disease. While it is no guarantee, it's likely she won't see symptoms for many years. Third, researchers are finally having success against this disease.

A 'cure'/effective treatment is coming. Scientists are now doing it in the lab and work is being done to repeat it in clinical trials. In addition, we also have a number of treatments available which may slow/postpone the progression of the disease.

This woman, who has every reason to fear this disease, believes that her family would cope better with her death knowing that she went in a way she wanted to go.

But what if she goes as she wishes, while relatively healthy, and then a cure becomes reality? Would her family grieve more, not less, knowing they could have had her many more years? While this obviously very caring lady is working hard trying to help the HD community, is it possible that her actions are signaling others that HD is hopeless at a time when there is finally real hope?

As with all things, each one of us will make our own choices and for our own reasons.

It might be surprising for some, but for many in our community the idea that there is now 'hope' is disturbing. It can be easier to prepare for the future when you 'know' what is going to happen. (Truth is, we never really do 'know'). But when someone has prepared themselves for years for their eventual decline and are then suddenly faced with the possibility of planning for retirement...it makes their lives uncertain again. And uncertainty breeds stress & anxiety.

It's time we start rethinking Huntington's Disease in our community. What was good advice a few years ago may no longer be good advice today.

I believe it's time we start making a stronger effort to keeping people healthy so that they may benefit from the coming treatments. We need to become more proactive against this disease. It's time we start fighting back and not just assume that "it's inevitable".

So, yes, articles like this get me thinking. One resulting thought...thanks to the researchers, my dear friend may never face what her father is facing today. That puts a smile on my face.

Posted by Dave at 11:21 PM | Comments (1) | TrackBack

August 30, 2004

Sarah Winckless Tells Her Story

I wish I had seen this sooner...Sarah Winckless, a Bronze medalist in the just concluded Olymnpics and HD positive, spoke to the London Daily Mail and HDSA has it posted on their website.

This is some of what she had to say:

It is not so much passing on the gene that worries me, because I belive that in 20 years time science will have found a treatment. But I am worried about being unable to care for my children. Neither John, nor Imy can remember a time when Mum was well - and the later I leave having children, the greater the risk that my children's experience will be the same.

With Huntigton's, there's no guarantee about age of onset. I know I'm fine now because I'm performing at this level- the very nature of Hutington's is that it affects coordination, so I know it hasn't started.

I can't fight it, so there's no point in fearing it. If it happens, it happens. I'm going to live my life and get on with it. The more positive I can be the better. That's what Mum has shown.

Some people don't last 10 years, and while every person is different, I really believe part of Mum's resiliece to the disease is her positive attitude and the fact that she keeps going.

For now, the only thing that matters is devoting my energies to fulfilling my potential on the water in Athens.

Mum, although confined to a wheelchair, is coming too. She's incredibly excited, even though she finds it hard to express herself. And if I do win a medal, she'll be the first person I give it to. She's done her bit. Now I've got to do mine."

I wish I had been there to see it ... what a remarkable family! Read the rest of what Sarah had to say.

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August 22, 2004

Olympic Medal! - pHD Stikes Bronze!

Yes folks! Life isn't over if you have the gene for Huntington's!

Sarah Winckless and her partner, Elise Laverick, earned a Bronze Medal in the 2004 Olympic Games! From the London Times:

"The days other medal went to Sarah Winckless and Elise Laverick in the double sculls, a success that was all the better for being so unexpected. Fourth at halfway, Winckless and Laverick overtook the Bulgarian crew for their well-deserved reward. By nightfall, the British squad lay proudly on top of the medals table for Olympic rowing.

Posted by Dave at 10:18 PM | Comments (0) | TrackBack

As if...

One of the true pleasures in life is reading some of the personal stories posted on HDAC.org.

We'll they've got a bunch of new updates (again!) Be sure to take the time to read them. I want to thank those who take the time to write these very personal stories. They do make a difference...Thank you!

Be sure to read "To Live 'As If' - My Story" which is a first in what looks to be a very promising series!

Also, in an all too familiar story, but one that ends with triumph... "The Test" by Suzanne Kengla. The editor's note on Suzanne reads: Suzanne is an amazing HD warrior. She provides tireless love and support for her siblings with HD and she is a top fundraiser at the annual Arlo Guthrie's Historic Garbage Trail Walk to Massacree.

We are a community of survivors. One of the many reasons our community is special and valuable.

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August 14, 2004

Reasons For Hope

Dr. Marsha Miller has a wonderful article on the HDAC.org website.

The article is called "Reasons For Hope - 2004" and she's right...there is hope.

Read the whole article here. Here's an excerpt:

Last time I pointed to RNA interference therapy as the most promising potential cure for Huntingtons Disease. The idea here is to bypass the attempt to alter the gene itself and instead block the instructions to make the HD protein itself, letting the normal huntingtins gene take over.

This line of research has made significant progress since I last wrote on Hope. Researchers can now cure HD in a test tube and cure a similar triplet repeat neurodegenerative disorder in mice using this technique. Dr. Beverly Davidson, the lead researcher in RNAi, estimates that there will be clinical trials for people within five years.

Philip Sharp, a Nobel laureate at the Massachusetts Institute of Technology, was quoted in the British newspaper, the Independent as saying, The broader science of RNAi is spectacular. Its just absolutely spectacular. This is not hype. The biggest science prizes in the world will fall to RNAi.

In the meantime, there has been an interesting convergence between HD and cancer research. There is a lot of money for cancer research and these drugs are already being tested with cancer patients, so more will be known about these potential treatments and they would be ready for approval a lot sooner if found to be effective.

HDAC inhibitors are being tested for use with cancer patients. They have also been found to arrest neurodegeneration in fruitflies and delay onset, lengthen survival times, reduce oxidative stress in the neurons, and improve both body weight and motor performance in an HD mouse model compared to untreated mice.

Geldanamycin, an anti-tumor agent, has been found to activate a heat shock response and inhibit huntingtin aggregation in a cell culture model of Huntington's disease and to rescue fruitflies from neurodegeneration.

Rapamycin, in Phase II clinical trials for cancer patients, has been found to lengthen survival times and reduce aggregate formation in an HD cell model, arrest neurodegeneration in a fruitfly model, and improved the behavioral performance of a model of HD mice compared to untreated mice.

Posted by Dave at 07:05 PM | Comments (0) | TrackBack

August 03, 2004

CoQ10 Article

There's a story that's been reprinted in a few newspapers on CoQ10. Surprisingly, the article is pretty accurate (papers rarely double-check these types of stories). I will reiterate that there is no proof that it helps those who are healthy. The studies seem to show benefit primarily for diseases that involve mitachondrial damage. As always, check with your doctor.

Key points from the article:

"CoQ-10 supplements may interact with medications, however, including some anti-clotting drugs and diabetes drugs.

Also take vitamin E if you take CoQ-10. These two substances work together, at least in lab studies.

No one knows how much CoQ-10 to take. Most studies have used doses of 50 to 200 milligrams a day. But the new study on Parkinson's tested 300, 600 and 1,200 milligrams, with the largest dose having the greatest effect.

It's expensive - usually $15 to $45 a month. The larger doses some people recommend for heart patients cost $3 a day, and a 1,200-milligram dose could cost you $10 a day or more at the health-food store.

Remember this: There's no reason to take CoQ-10 if you are healthy, "just to be safe." The long-term effects are unknown, and the price is high. If you try CoQ-10 to treat a disease, get medical advice about doses and formulations - even though it's just guesswork at this point - as well as about potential drug interactions."

Posted by Dave at 11:32 PM | Comments (0) | TrackBack

August 02, 2004

The HD Nobody Sees Article

The Huntington's Disease Advocacy Center website has another great article.

This one is written by a person with Huntington's Disease (pHD) and what she is going through every day. It is a very frank and open narrative on her life. If someone in your life is coping with Huntington's Disease and you'd like to better understand what they are experiencing, I recommend you read this article.

The writer, Kelly B., sounds like a strong and wonderful person and she's done a real service for the HD community by writing this article. She finishes the article with this wonderful thought:

"I have been at peace with my Huntingtons for several years now. I just take it one day at a time. Just like anyone else dealing with anything else.

For a long while I was stuck somewhere between anger and depression, but I realized that being mad or sad about the HD only wasted both my energy and the precious time I have left. While I do not have a choice in having HD, I still have a choice in how I chose to live my life and whether I see myself as blessed or cursed. It truly is a matter of perception. You can let the things that happen in life make you bitter, or make you better. That is sometimes the only choice we always have..."

Posted by Dave at 07:18 PM | Comments (0) | TrackBack

May 09, 2004

Happy Mother's Day!

Though it's not a happy day for everyone in the HD community...

For those who are new to HD, holidays such as Mother's Day can be stressful to many in the community. There are mothers who feel guilty for (possibly) passing on the gene to their children. There are children who have lost their mothers and there are children who do not have fond memories of their mothers.

To the Mothers I say...

It's time you forgive yourselves. While it is true that your children will have some unique challenges in their lives, they also have the joys that come from the life you gave them.

Life is a mixture of good & bad, happiness and sorrow, and smiles & tears. This is true whether Huntington's is a part of a person's life or not. I have many friends in the Huntington's community who are very special and wonderful people. They have amazing amounts of faith, love, caring, and understanding. It's been a real honor to have them in my life. Many in our community with the gene have gone on to do great things - as folk singers, firemen, writers, and college professors (to name a few).

One more thing I need to add here...at the rate research is going on Huntington's Disease, and unlike generations past, your asymptomatic children may very well have to plan for their retirements. Things are changing!

To the children I'd like to say...Do not hang on, for too long, to the wishes and dreams of what "might have been". Look to today and tomorrow for what you can make of it. You can't control the cards you were dealt in life, but you can control how you play those cards. Make the most of what you have, it's more than you realize.

Posted by Dave at 08:18 AM | Comments (0) | TrackBack

March 05, 2004

Live Better, Live Longer

Scientists have frequently noted that labratory animals with HD live longer and healthier when there is a richer environment.

Now they've found one of the reason this might be...It's due to greatly increased BDNF levels in the brain. BDNF is that brain chemical that seems tied to healthier and longer-living brain cells. HD Lighthouse has wisely been touting the benefits of increasing BDNF to the Huntington's Disease community for years.

Exercise, take classes, take on new hobbies, try new things...all of these might help you live a longer life. Even if they don't it'll certainly be richer!

J Neurosci. 2004 Mar 3;24(9):2270-6.

Environmental enrichment rescues protein deficits in a mouse model of Huntington's disease, indicating a possible disease mechanism.

Spires TL, Grote HE, Varshney NK, Cordery PM, van Dellen A, Blakemore C, Hannan AJ.

University Laboratory of Physiology, University of Oxford, Oxford OX1 3PT, United Kingdom. tara.spires@physiol.ox.ac.uk

Huntington's disease (HD) is a devastating neurodegenerative disorder caused by a CAG repeat expansion encoding an extended polyglutamine tract in the huntingtin protein. Transgenic mice expressing a human huntingtin transgene containing an expanded CAG repeat (R6/1 model) develop a neurodegenerative disorder closely resembling human HD. Previous work demonstrated that environmental enrichment delays the onset of motor symptoms in this mouse model. We confirmed that at 5 months of age, enrichment ameliorates motor symptoms (assessed using the rotarod test) and prevents loss of body weight induced by the HD transgene. We further examined molecular consequences of enrichment by determining changes in protein levels in the neostriatum, hippocampus, and anterior cortex using quantitative Western blot analysis. Non-enriched HD mice have severe reductions in BDNF in the hippocampus and striatum at 5 months, which are entirely rescued by enrichment. BDNF levels are unaltered by HD in the anterior cortex, suggesting that enrichment might prevent HD-induced impairment of anterograde transport of this neurotrophin to the striatum. NGF is unaffected by HD. Non-enriched HD mice also exhibit deficits in dopamine and cAMP-regulated phosphoprotein (32 kDa) in striatum and anterior cortex. Environmental enrichment rescues the cortical but not the striatal deficit at 5 months. These results suggest that environmental enrichment benefits animals at early stages of the disease by rescuing protein deficits, possibly through rescuing transcription or protein transport problems.

PMID: 14999077

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February 20, 2004

Diet & The Brain

HD Lighthouse has a good piece on diet and preserving the brain worth reading. Study after study shows that diet can affect the health of neural cells.

While the study referenced isn't specifically about Huntington's Disease, Jerry is absolutely correct when he mentions that HD is age related. What he means is that the process that causes the early death of neural cells in HD is very similar to the process of cell death due to age. You can read the whole thing here.

Posted by Dave at 06:46 PM | Comments (0) | TrackBack

December 23, 2003

Grape Juice Benefits?

Are you doing everything you can to keep yourself healthy?

If you've been following HD Lighthouse you know about the benefits that blueberries may offer those with Huntington's Disease. The Future Pundit blog reports on a study showing that grape juice may also offer similar benefits.

Here's a quote: "The Concord grape juice findings are not surprising," explains Joseph. "We have seen similar effects in the work we've done in blueberries."

"The researchers point to several factors as potential mechanisms of action, including increased dopamine production and a potent overall antioxidant effect. According to previously published USDA studies, Concord grape juice has the highest total antioxidants of any fruits, vegetables or juices tested."

Visit the Future Pundit blog and also read about blueberries, blackberries and spinach.

Posted by Dave at 08:51 PM | Comments (0) | TrackBack

November 25, 2003

Huntington's & Children

A new study found that 3/4th of Briton's would not have children if they knew they carried a genetic disorder such as Huntington's Disease.

This isn't surprising.

I just finished talking with a friend who, as she puts it, got "fixed" because of HD in her family. Since then, she's found out that she also has the disease and while she's glad she made that decision...it still hurts her to know she won't have a family of her own.

Just one of the many 'hurts' that pHD'ers (persons with Huntington's Disease) carry around...and tell almost nobody.

Posted by Dave at 08:52 PM | Comments (2) | TrackBack

November 21, 2003

Experiences With Huntington's Disease

If you haven't been there, CureHD.org has a collection of stories written by and about those who've been affected by Huntington's Disease. This is a great link to give to friends who don't quite understand HD.

HDAC.org has a great collection of personal stories on this page. As you read through them you'll find a wide variety of opinions regarding Huntington's Disease. Agree or disagree, you certainly see a cross-section of the HD community.

Posted by Dave at 06:15 PM | Comments (1) | TrackBack

October 25, 2003

Testing Positive

HD Lighthouse comes through again with a great article. This time the article is written by Kelly B., a person who has tested 'positive' for the Huntington's Disease gene. This is one of the best articles I've read relating to HD and a valuable resource for those who have taken the predictive test or are thinking about it. Do yourself a favor and go over and read the full article.

Here is a couple of excerpts to tempt you:

"There is life before Huntington's and life after finding out you have Huntington's. While things will never be the same as they were before testing positive, and really, how could they. Life will eventually return to running on an even keel after you have had some time to digest your positive result. "

"I played the "Is this normal, or is this Huntington's" game for awhile. Wondering, for example, if I was just clumsy, or if it was the HD. Until I realized that determining the source would in no way change the bottomline. I am clumsy. Why, made no difference."

"If I could go back to the day I tested positive, I would tell myself the following things:

Want more? You can read the whole article here.

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October 23, 2003

Importance of Living Wills

The Orlando Sentinel has a great article on the importance for all people to have a living will. If you've been putting it off until now, it's time to get one. Here's a couple of excerpts:

"Under the law, all competent adults have the right to make decisions about their health care, including the right to refuse medical treatment. But even people who are no longer able to make their own decisions - maybe they're in a coma or suffering from dementia -- don't lose that right.

The only hitch is, to ensure their wishes are followed, they need to have made them known before they become incapacitated."

And...

"If you never want to be force-fed, say so. If you want every option exhausted, say so."

This advice goes to everybody, not just pHD's.

Posted by Dave at 07:42 PM | Comments (0) | TrackBack

October 19, 2003

Boosting The Brain

DB's Medical Rants points to an article on CNN's website on exercise boosting memory. Here's an exerpt:

"Now we know that there are many triggers that make parts of the brain regenerate themselves."

One of those triggers may be linked to your fitness level.

"Cardiovascular exercise that's done over a longer period of time will tend to reduce the amount of tissue you lose as you age," says Stan Colcombe, a researcher at the University of Illinois-Urbana.

That includes brain tissue, and losing less of it may mean keeping more precious memories."

This backs up what's been said on this website and on HD Lighthouse's website...you can fight the loss of brain cells due to Huntington's Disease. As mentioned here before, Scott Midyett's exercise program took him from disability to riding a unicycle and competing in triathalons. Brain scans show that he is GAINING brain mass!

Whether it is BDNF or some other chemical protecting and/or generating new brain cells or some other factor increasing the body's ability to cope with HD's protein framents there is clear evidence that exercise does help keep the brain healthy.

Scott started his program just by walking and if you aren't already in some kind of program that keeps you active, walking is a great way to start. Here's a good webpage that will help you start walking.

Posted by Dave at 09:28 AM | Comments (0) | TrackBack

September 05, 2003

Repairing The Brain

It's been a slow week for HD news and I've been too busy to write new articles. Today I'm taking a friend to the doctor's office so they can participate in the PREDICT study.

Do yourself a favor and read this great article at HD Lighthouse, taken from Scientific American. In the article, Dr. Gage talks about what has been learned about repairing the brain in the last few years.

There is a lot of information here and, considering the subject matter, an pretty easy read. Check it out.

You may also want to pick up the September 2003 issue at your local newsstand. It's a "Better Brain's" issue and there are at least nine brain related articles.

Posted by Dave at 07:56 AM | Comments (0) | TrackBack

August 10, 2003

At Risk

If you havent been to the Huntingtons Disease Advocacy Center (HDAC) website youre missing one of the better HD websites. Its chock full of articles and information.

One of the latest articles is a piece written by Jill Ginsburg. Shes a woman who has been at risk and found out she had breast cancer. She expresses the surprise of so many whove lived with the specter of Huntingtons Disease their whole life only to find, like anybody else, that they can also get other diseases.

In her case the news is mostly good. The cancer is being treated and she tested negative for HD. Now at the age of 44 shes living her life and shes now training to enter the Danskin Triathlon.

Its a good read, check it out.

Posted by Dave at 09:26 AM | Comments (0) | TrackBack

August 09, 2003

HD Benefiting From The HD Positive

The South Delta Leader (Delta, British Columbia) has very nice article on Dean Crain. If that name sounds familiar, its because his family is featured this months Oprah Magazine.

Heres what Dean has to say about living with Huntingtons:
"It's not a death sentence unless you make it that way."

Dean has difficulties walking but he raises money for HD research by participating in distance running events. Its not easy he has to wear gloves to protect his hands when he falls, a frequent occurrence.

Deans fundraising has been very successful; so far he has raised $30,000 for the British Columbia chapter of the Huntington Society of America.

His positive attitude is evident throughout the article which finishes with this:

After being diagnosed with the disease, Crain made a list of things to look forward to instead of dwelling on the things he would lose.

"It's is getting shorter every day," he says of the list.

You can read the article here.

Posted by Dave at 08:44 AM | Comments (0) | TrackBack

August 07, 2003

More On Creatine

Check out this great piece that Jerry wrote on HD Lighthouse. If you're still have some questions or confusion about creatine this article may clear it up for you. Incuded in the article is a clear guide on possible side effects and information on the creatinine test. You can read the article here.

Posted by Dave at 06:45 AM | Comments (0) | TrackBack

August 03, 2003

Beating HD - Scott Midyett

If you don't regularly visit the HD Lighthouse, you should. They have just posted a wonderful article written by Scott Midyett. Its a must read.

Scott is a pHD who started having HD symptoms eight years ago. His symptoms had progressed to the point that he could no longer work. At one point, he visited the emergency room six times over a two month period due to broken bones from falls.

So far the story isn't that unusual, except...

The picture at the beginning of the story is of Scott riding a unicycle...recently. As you read his story you'll find that he's completed a tri-marathon and that his CT scans actually show his brain getting healthier!

Now the story is unusual! So why is his health improving when for others it is declining? The answers are all in the story.

First, he got good help. Scott had a good doctor. The doctor put Scott on an anti-depressant right away. Depression is one of the deadliest (and most common) symptoms of HD. It causes people to give up hope and in many cases even commit suicide. When Scott started taking the Paxil he was taking his first important step in taking care of himself.

Second, he kept himself informed. Scott kept up with HD research by reading the HD Lighthouse. There he found out about the brain was able to regenerate neural cells and ways he could help that process.

Third, Scott didn't give up. When life got difficult, he started to fight back. After his doctor gave his approval, Scott started walking.

Fourth, he believed in the 'impossible'. He believed that if he worked at it, he could improve. Scott believed he still had some control over his future.

Fifth, he didn't give up. This is the hardest step. The second biggest reason that people fail is because they quit. They just stop. There had to have been times when he was sick or tired or the situation looked a little more hopeless but he kept at it. Over time he got stronger and he got healthier.

Oh, what's the biggest reason people fail (I know you're wondering)?
They don't start.

Sixth, Scott understood the importance of "small steps" and this is the secret to making big changes in your life. He focused on achieving the "next step". His first goal was walking on the treadmill. Then his goal was going faster and from there each goal was a "small step" further. Do you think he would have succeeded if his initial goal, after recovering from his many falls, was to ride a unicycle? His road from there would have been filled with the potholes of frustration and despair; instead his road was paved with accomplishments. Small steps.

Seven, Scott doesn't stay satisfied. He keeps looking for the next challenge. With each challenge that he conquers he gains pride, self-esteem, and motivation to do it again.

So can you do this also? Of course you can! Read Scott's story and follow the seven steps he took to success. It could become your first step to getting healthier and happier.

Posted by Dave at 10:24 AM | Comments (1) | TrackBack

July 12, 2003

The Third Option

A change of pace for today...

I got to thinking about a friend of mine who has tested positive for the HD gene (pHD). Like many, she thought long and hard about getting tested. Ultimately, she decided that she needed to know whether she should save for retirement or whether she should spend her money doing the things she's always wanted to do.

After she found out her results she started making plans to do those things on her list she always wanted to do. It was shortly after this that she experienced what I had once heard described (and is now one of my favorite sayings) as: "Life is what happens to you while you are making other plans". Due to circumstances outside of her control she's now having to put some of her plans on hold. This wasn't something she was prepared for. If she can't do what she's always wanted to do now, will she be able to do them in the future? Maybe getting the test was a mistake, taking away any remaining hope?

This reminds me of someone I once worked with. He was a top-notch salesman who was everybody's friend. He was also an alcoholic and a three pack-a-day chain smoker. Like the other men in his family his dad had died by the age of 52. Because of this, he lived his life believing that he would die by age 52. He had no doubts in his mind on this. Since his fate was already decided, or so he thought, he didn't worry about any of life's other risks.

Life had other plans for him. At 57, still chain-smoking and drinking heavy, and with no life savings or retirement plans he was scrambling to prepare for eventual retirement. This wasn't an eventuality he had prepared for. Last I heard he was nearing 70 and still going strong.

So what about my friend? She's in her 30's, she's officially 'symptom free' and she is taking care of herself. The fish oil, minocycline and coQ10 are probably helping to delay the onset of the disease.

Looking foward it's clear that more effective treatments for Huntington's are coming; perhaps TUDCA and/or HDAC inhibitor's in the more immediate future. Lab testing is finding several promising treatments that target the misfolding Huntingtin protein. DNA gene therapy is coming closer to reality and RNAi gene therapy could happen even sooner. An effective treatment or cure for Huntington's Disease is still a few years away but what about someone who is asymptomatic or who is in the early stages of the disease? Can we be so sure about what the future holds?

Before testing, my friend considered two possibilities - a negative test and retirement or a positive test and 'living life' now. Perhaps its time in the HD community to consider a third possibility - testing positive, still living life and planning for retirement.

As for my friend, she didn't make a mistake getting tested. Because of the test, she's now doing the things that will give her the best chances for enjoying retirement. Some dreams have been delayed but she will still achieve them. No matter what, she knows to enjoy what she has now and I'm learning that from her. A couple of weeks ago I missed, by less than a second, of being in a car accident that would have probably killed me. Like many who aren't at risk for HD, I've lived my life assuming I can always enjoy it after I retire.

"Life is what happens"

Perhaps it's time to consider the third option: Living and enjoying life to the best of our ability now AND planning for possibility of retirement. That's probably good advice for anyone.

Posted by Dave at 10:48 AM | Comments (0) | TrackBack