She Will Dance

She Will Dance

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by Leah Amberly Barker

Originally published on Nov 21, 2016

One of my best friends bravely decided to get tested this year, and she ended up testing positive. After she shared the news with me, I began feeling angry, bitter, and depressed, but I chose to fight it in the form of poetry, and this was the result.

The poem’s title is fitting, as the harsh physical symptoms that set in are called “Chorea,” which is Latin for dance, as the non-stop twitching mimics.

This poem is for Anna, who waited 49 days for her results. It’s for everyone who battles with Huntington’s Disease. It’s for everyone who battles with mental illnesses, which I am all too familiar with, as it is written in my DNA.

This is “She Will Dance.”

She moved mountains the day when she made her choice.

In her 50/50 chance, she has been searching to find her voice.

Forty-nine days goes by faster than she had hoped

And the clock on her wall ticked louder and louder the faster that day approached.

For months, she pursued a hope that ran faster than her thoughts

But it became stuck within the endurance of time racing on her clock.

In sleep, hunger, and happiness, she quickly became deprived

And she couldn’t quite form a word for what she was feeling, but it was utterly close to terrified.

As certain as the flip of a coin, her future was unfolding

Forty-nine days goes by too fast, and she thinks back to what the genes in her dad could possibly be composing.

She looks into his eyes and sees the guilt that he tries to hide.

This disease will either take them both, or leave her with an undeserving remorse that she will also try to disguise.

The clock on her wall finally led her to this day.

Her lover grasps her hand in his, stronger than he was yesterday,

And she holds firmly in the other hand courage, unaware that it will never fade away.

But the doctor’s head hangs low, and her head starts to spin

As he apologetically claims “Positive,” she feels like a stranger in her own skin.

She doesn’t know that the tears she will shed represents the emotion embodied in thousands,

Though she feels weak, she will heal and move mountains.

Though she feels alone, she is unconditionally surrounded.

Though she feels afraid, she still grasps courage in her hand.

Though she feels like she is drowning, her feet are firmly planted on dry land.

She walks out the door with her head hanging low.

“Sweet girl, there are flowers blooming inside of you, and there is so much you don’t know.

The seeds that you planted long ago will now flourish more forcefully as you continue to grow.

You’re a fighter, a lover, a daughter, a friend,

And your purpose in this world does not change now-it begins.

Take my hand, and I’ll show you. I’ve been there before.

You can be the solid land, and I’ll be your shore.

You’re not alone, and above all, I want you to realize

That after the long shadows of night bring tragedy, there is a breathtaking sunrise.

It will come.”

And she heals herself, taking it day-by-day; with each breath, she’s revived

And the scars left behind show what she’s been through-and survived.

Though she is small, her sickness makes her a force to be reckoned with.

She knocks down every roadblock, and her target, she will never miss.

Though someday she will be robbed of her body, her mind, and her smile,

She will take back every minute of it, and make every movement worthwhile.

Her twitching, her falling, her spinning and her prance-

She will refuse to call it disease, so she names it her dance.

And dance she will, until her very last breath.

Her choking will be called singing, and relaxation will be the name of her brain’s death.

She embraces it now, and holds on to her hope.

The tears in her eyes will only show her soul’s kaleidoscope.

Look out world, because she will take every chance

To spread love, move mountains, live fully…

She will dance.

 

Listen to Leah perform her poem live here.

Leah says, “This is my first time performing live, so please excuse my nervous habits and the shaking of my voice.”

https://www.youtube.com/watch?v=OBb4yW9jDFg

 

You can follow Leah’s blog, “Capturing the Corners,” here: http://capturingthecorners.com/about/

 

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The Patient Advocate: Celebrating the Season of Giving

The Patient Advocate: Celebrating the Season of Giving

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by Katie Jackson, President/CEO, Help 4 HD

I would like to begin this article with some of my favorite quotes about being a patient advocate:

  • “Advocacy: To change ‘what is’ to ‘what should be’”
  • “Strong people stand up for themselves. But the strongest people stand up for others.”
  • My final quote is one that was introduced to me by one of the strongest patient advocates I know, Judy Roberson. This quote is used by Judy every time she speaks publicly, and because of her, it is now used by many HD advocacy groups. “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”—Margaret Mead

Whenever I think of the power of the patient advocate, I think about the polio epidemic. This is an event that I have talked about for years when I speak about what a group of patient advocates can accomplish. What Franklin D. Roosevelt, Basil O’Connor, and Eddie Cantor, along with all the powerful advocates, did to combat the polio virus was astounding. A vaccination for the polio virus was the result of their efforts. The world was forever changed because of the March of Dimes advocates.

I started my journey as a patient advocate over ten years ago. I quickly learned that to be a patient advocate, you have to find a cause you are deeply passionate about. One that you can feel deep in your soul that brings out a power in you that you didn’t know you had. You must be passionate, compassionate, persistent, patient, resilient, and strong. You will endure disappointment and pain when your countless hours of work don’t go the way you planned.

The patient advocate knows what I am talking about, but the passion and strength we have make it so that we “won’t back down,” and we continue to fight and push on, even when things don’t go our way. We don’t have time to cry over a blow; there is too much work that needs to be done and too many people that are counting on us, so we push on.

There are those brilliant moments when you work so hard on a project, and it succeeds, and the change happens right before your eyes. These moments are what it is all about—to know all the work, blood, sweat, and tears have made a difference for the families you are serving. There is no better feeling in the world for a patient advocate than when you get to see the world change a little because of your efforts.

The patient advocacy spirit within the Huntington’s disease community is strong. This is a family disease, and families have been advocating for years and years and generation after generation. I have had the honor of meeting HD patient advocates who have been fighting for over 30 years. Being a patient advocate myself, I am here to tell you that at times it is exhausting. That is why I am always in awe when I get to meet the “pioneer” patient advocates. Their persistence and strength to keep going after so many years is truly incredible. Although there are still no therapies and no cure for our loved ones living with HD/JHD, can you imagine where we would be if it weren’t for those early advocates who fought so hard for our families to get support, care, and to find the gene that has affected families for hundreds of years?

Without the patient advocate, change wouldn’t happen.

I am so excited that we are using the month of December for “Help 4 HD Live!” to highlight the patient advocate. They call this holiday season the “season of giving,” and I can’t imagine a person in this world who is more giving than a patient advocate. They are truly the most selfless people walking this earth, fighting hard, not for themselves, but for those who can no longer fight for themselves.

We have decided to name the series of shows we’re doing in December “Celebrating the Season of Giving.” I would like to share with you a little about the four advocates we will be interviewing and a little about what they have done and are currently doing to advocate for our HD community.

 

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Lauren Holder, North Carolina

Lauren is an incredible advocate and person. Lauren has been advocating for our Huntington’s disease community for 10 years now. She has hosted many Huntington’s disease fundraisers. She started her advocacy journey by going to Washington, DC, twice a year to speak on behalf of the Huntington’s Disease Parity Act. She started educating law enforcement after her father went missing for 12 hours, and she was unable to get any help, due to the lack of knowledge about HD.

She has worked with NAMI (National Alliance for Mental Illness) to get CIT (Crisis Intervention Training) in North Carolina for law enforcement. Lauren was the HDSA North Carolina president for many years before she had to step down to help care for her father. In 2004, she was honored with the HDSA Person of the Year award. She has written a book about living with Huntington’s disease and is in the process of composing her second novel.

Recently, Lauren and her father’s story was featured in an article in Good Housekeeping. Lauren is a powerhouse, and we are lucky to have her voice telling her story and educating people about what it is like to live with Huntington’s disease.

 

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Havanna Lowes, Missouri

 Havanna is one of the most brilliant 17-year-olds I have ever met. Havanna visited Washington, DC, for the first time in June of last year. There, she was personally able to speak to four Congressional staff members about HD and the parity act. Havanna spoke to her senator from Missouri, and he signed the parity act in July.

Havanna has spoken at many education days. Just recently, she spoke at the Huntington Study Group meeting in Nashville in November. She is passionate about Huntington’s disease youth programs like NYA (National Youth Alliance) and HDYO (Huntington’s Disease Youth Organization). She has held fundraisers and has given talks about HD to her community.

Havanna says, “Advocacy is about telling your story to your community and getting people involved and informed.” Havanna is an amazing young lady who I believe will go so far in this world and will continue to be a champion for HD.

 

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Marie Clay, New York

Marie Clay has been a Huntington’s disease advocate for 20 years. Marie has educated many people about HD over the years. She has done law enforcement HD education, CIT, firefighter and first responder training, hospital training, and much more. She has spoken to many community organizations, like the Rotary Club, about HD.

Marie has been on Capitol Hill many times to speak up for the parity act, and recently, in September 2015, Marie spoke on a panel at the FDA (Food and Drug Administration) Patient Focus Meeting. Marie was able to tell members of the FDA about the challenges living with Huntington’s disease.

In 2008, Marie started a support group in Virginia Beach and has held many fundraising events.  Marie worked very closely with Sitrin, a care facility in New York state that now has a unit dedicated to HD/ALS. She has introduced many families to Sitrin, and everyone’s hope is that one day we will have more options like Sitrin available to our HD community.

Marie is one of only two employees that have been honored twice with the Volunteer of the Year award by GEICO Insurance. Marie has been fighting for HD families for many years, and we are thankful for all she has done for the HD/JHD community.

 

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Kinser Cancelmo, Massachusetts

Kinser became more involved with both HD and JHD after her daughter Meg passed from JHD after spending four months in the hospital, with doctors unsure about how to help her. Kinser lost her husband shortly after she lost her daughter.

While Meaghan was in the hospital, Kinser enlisted local news teams and radio stations to do programs to raise awareness for JHD.  The local radio station had Kinser on their morning talk show to speak about JHD.

When Kinser lost her daughter and her husband just a couple of months apart from each other, she decided it was time to work on starting a nonprofit business in memory of her daughter, “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation, Inc.”  Kinser says, “I was appalled at the lack of medical services and places available for children/teens her age that had illnesses that the medical community couldn’t handle.  Especially JHD.  I wanted to raise money for researchers to continue working on medicines and hopefully a cure for this horrible disease.  A group of my friends, who are now Board members of my business, began working on a fundraiser to raise these funds to send out to UC Davis in California.  The fundraiser was held in September 2016, raising more than $20,000.”

Kinser is a board member of her local Massachusetts Chapter of HDSA.  She is involved in attending meetings quarterly and helping with the HD walks around the state, Education Days, as well as many other events that the chapter sponsors.

Kinser recently took Meaghan’s service dog, Dixie, and finished putting her through a pediatric training therapy class. Dixie passed the test so that she is now an official K-9’s for Kids therapy dog.

Kinser is an incredible woman. One can only imagine how immensely hard it would be to lose your husband and your little girl only two months apart from each other. Kinser is a survivor and is taking what she has learned to help others. We can’t wait to see what the future holds and the changes that will be made because of the “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation.”

Celebrating All the Patient Advocates

Help 4 HD International would like to thank all the Huntington’s disease patient advocates out there. Without you, change will not happen. So keep fighting, my friends, for the next generation and all the generations to come. Let’s hope that one day our efforts become a paragraph in a history book of “how they used to live before they found the cure for Huntington’s disease.”

 

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HD Youth: We Are the Future

HD Youth: We Are the Future

By Ashley Clarke

They say there’s a reason for everything.

So there must be a reason my life is affected by Huntington’s disease.

And that is the reason for this blog.

My name is Ashley. And I have a story to tell . . . .

If you have read some of my previous blogs, you will know that I have been caring for my father for a number of years; in total, Huntington’s has been in my life for around 10 years. It is 2016, and we have amazing organizations around the world which offer support to young people worldwide.

At a young age, I was told my father had an incurable disease which I had a 50 percent chance of inheriting. This was a tough pill to swallow; there were no answers for my mother, brother, or me on how to cope with the news or what Huntington’s was/is. There were, on the other hand, plenty of horror stories, and this is what I filled my mind with.

I was obsessed with Huntington’s disease and what it would do to me. I was obsessed with it taking over my life and taking control. I had to be in control! Control was something I did not have and still do not have. I cannot control what will happen in my future; I do not know if I will make it to 50. I understand that no one knows what will happen tomorrow, and the most frequent thing which would be said to me would be, “You could get hit by a car tomorrow,” because getting hit by a car is the only thing that can kill you, right? There are millions of diseases and millions of different ways to die, but I have a 50 percent chance that my way could be because of Huntington’s disease.

At the age of 16, I decided to organize a fundraiser for Huntington’s Disease Association Northern Ireland. They had been supportive of my family in the first few years of Huntington’s entering our lives again, and I wanted to give something back. I was obsessed. This night had to be perfect. I held it at our local hall and had a friend come and be the DJ. I got tickets printed and sold them for £10, I think; friends and family donated raffle prizes; my father’s late brother donated a lot of tools from his hardware store; and all night, people were coming up to me, giving me large amounts of money. The bar alone donated £250. In the end, we raised £1500, which was overwhelming! I got up on stage and made a speech. I thanked everyone for coming, and there was no surprise, but a fight had broken out, and I told the entire room to wise up, grow up, and remember why we were here, and what we were supporting.

As said before, I was obsessed. I had spent months planning this night. I had made a presentation to be played on the night about Huntington’s disease, and watching it now, I’m not entirely sure all the information on it is correct; there’s even a spelling mistake! A friend of my dad’s made DVDs of Dad and his friends skiing on Lough Erne over the years, before his plane crash. Once the night was over and the mini bus I had arranged to bring people home was done, it was time for Mum, Ryan, Mary (a family friend), and me to head home to our house in Killylea. We got home, and everyone headed to bed. I sat in the living room with the light off watching the DVDs of the man my father used to be, crying hysterically because I was losing my dad, and I didn’t know what to do next.

I felt lost. I was lost.

I am now 23, and it didn’t exactly get any easier. There was no support, doctors, social workers, and health professionals. Everyone was concerned about how Dad was and how the disease was progressing, and I understand that more than anyone. I watched him every day deteriorate and continue to do so. Carers are important, too, though. As much as my father is my life and his care and well being are everything to me, my mental state is important as well. My future is important.

Having a youth programme for the young people affected by Huntington’s disease is vital. Society needs to look after young people’s state of mind and ensure that they get the information they need and not scare stories. Most important, young people need to get the support they require, trying to cope with the fact that a loved one suffers from a disease which is incurable and the fact that the same disease may take their life.

We need to support the young people and show them that Huntington’s disease does not define you; it is not who you are. It may be a large part of your life, but that’s just it, a part of your life, not the entire thing.

It took me many years to realize this, and through #imnotdrunk I would like to get this message out to the world.

You can still do everything you want to do, go to university, travel, and live your dreams. Huntington’s does not have to control your life; you can still be positive and live the life you choose. Take control. If you want to get tested, then that’s your choice, and don’t let anyone take that away from you; if you do not want to find out if you have inherited the disease, then that’s also fine. Whichever your decision may be, let it be your own, and continue to live your life how you want to.

You can follow Ashley’s blog here: https://kyraashley.wordpress.com/

You can follow her on Facebook here: https://www.facebook.com/hdawarenotdrunk/?hc_ref=SEARCH

You can also follow her on Twitter at #imnotdrunk

This blog originally appeared on Ashley’s blog on October 11, 2016.

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Death with Dignity to Be Discussed on ‘Help 4 HD Live!’

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A Question of Life and Death

by Sharon McClellan Thomason

Should people who are suffering from terminal illnesses be allowed to choose “death with dignity”? Should families of loved ones who are suffering from terminal conditions be allowed to “pull the plug”—or even administer lethal doses of medication?

Whether it’s called Right to Die, Death with Dignity, Compassion and Choices, End of Life Choices, or a variety of other names, legalizing the right to choose to end one’s own suffering, under one’s own terms, has been a topic of controversy for many years. In fact, the name Hemlock Society (once the name of America’s oldest Right to Die organization and the current name of other such organizations) goes back to the days of Socrates, the ancient Greek philosopher.

During the 5th century BC, Socrates, at age 70, was convicted of corrupting the youth of Athens by expounding the ideas of truth and virtue. Rather than accept exile, Socrates chose to drink a tincture of hemlock, a plant that used to punish political prisoners. “Hemlock” has thus come to represent rational suicide, though it does not result in the painless death usually sought by those who choose assisted suicide.

A simple Google search will result in over a million articles and sites about assisted suicide, including non-profit organizations that support assisted suicide and recipes for suicide “cocktails.”

Many people are adamantly opposed to assisted suicide, some because of religious views, others because they fear a decline into euthanasia of persons deemed to be “undesirable,” particularly the poor and disabled. A Google search will turn up just as many articles and sites opposed to assisted suicide as those who argue in favor of it.

Those of a certain age may recognize the name “Dr. Jack Kevorkian.” Dr. Kevorkian, nicknamed “Dr. Death,” was a medical pathologist in Michigan who helped approximately 130 terminally ill people end their lives peacefully and on their own terms during the 1990s. Eventually, he spent eight years in prison, having been convicted of second-degree murder in 1999, but not before a well-publicized campaign for physician-assisted suicide that included a videotape of Kevorkian administering lethal drugs to a patient with Lou Gehrig’s disease (ALS). Kevorkian submitted the videotape to CBS, which broadcast it on its popular newsmagazine show “60 Minutes.”

I can remember watching it, and I clearly remember my daddy telling us that if he ever got to the point that he was being kept alive by machines to “send in Kevorkian.” Despite his wishes, Daddy died in a nursing home, with a feeding tube and oxygen, after a series of small strokes and congestive heart failure. It was not the end he would have chosen.

In the Huntington’s disease community, the rate of both suicide attempts and completed suicides is much higher than that of the general population. According to “Suicidal ideation in Huntington disease: The role of comorbidity,” by Heather Wetzel et al (published in Psychiatry Research in 2011), completed suicide has been reported to be as high as 13 percent, “a seven to twelve-fold increase above that of the general population’s suicide rate of <1%,” while 27.6 percent of individuals with HD report at least one suicide attempt.

Sadly, I am all too familiar with the topic. One of my brothers-in-law declared when he was diagnosed that he would commit suicide when he could no longer care for himself; several years later, he made good on that promise, shooting himself because he “didn’t want to become a burden on anyone.”

My own son had several suicide attempts, two serious enough overdoses to end up in the Intensive Care Unit on a ventilator. He has a DNR (Do Not Resuscitate) order, and because of that, our doctor told me that, legally, he probably should not have been placed on the ventilator. I cried when she told me that. Today, though, he is glad to be alive. That raises the question, “Should someone with a terminal illness be allowed to choose the circumstances of one’s own death, and if so, when and how?”

Many may remember the troubling story of Georgia woman Carol Carr who walked into a nursing home in 2002, and shot to death her two sons who suffered from the late stages of HD. Although she and her advocates considered it a “mercy killing,” she was sentenced to five years in prison and prohibited from taking care of her youngest son should he become ill with HD as well. She was subsequently released from prison after serving two years; her youngest son was diagnosed with HD, and she has not been allowed to care for him.

Across the nation, advocates are attempting to address the issue of Death with Dignity through Advance Directives (living wills, DNRs, and health care proxies). In a handful of states (Oregon, Washington, Vermont, Montana, California, Colorado) and the District of Columbia, advocates have succeeded in having Death with Dignity laws passed. About 20 or so additional states have bills pending. All are modeled on the Oregon law, the first to be passed in the United States (Oct. 27, 1997), which requires, among other things, that a patient must make two oral requests and a written request to his/her physician. The physician and a second physician must then determine that the patient is within six months of death and mentally competent. The patient must also be able to self-administer (legally interpreted as “swallow”) the prescribed lethal drugs.

What, then, are the implications for people who are suffering from terminal neurodegenerative diseases—Alzheimer’s, ALS, Parkinson’s, Huntington’s? Retired New York attorney Alan Pfeffer believes that current legislation overlooks such people and is advocating for laws that are more inclusive.

Alan will be my special guest on “Help 4 HD Live!” on Monday, November 14, at 6:30 p.m. Eastern Standard Time. He will talk about his connection to Huntington’s, the status of Death with Dignity legislation in the United States as well as in Europe and Canada, and will present his argument for what he believes the HD community must do. The chat room will be open for questions and comments.

Don’t miss this important, sensitive, and highly controversial episode!

http://www.blogtalkradio.com/help4hd/2016/11/14/death-with-dignity-a-discussion-with-alan-a-pfeffer-esq

 

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