WeAreHD.org - The Social Support Network for People Living with Huntington's Disease

Living Positively with Huntington’s Disease

December 29th, 2009 by Laura Lu Thanks for the link to this Susan!!!
June 10th 2006, HDSA National Convention in Milwaukee, Wisconsin.

Good afternoon, my name is Phil Hardt. I am the HDSA 2001 Person of the Year and have been the current Chief Volunteer Officer for the Arizona Affiliate and Director of their Annual HD and JHD Retreat for the last 6 years. I had the privilege of testifying about HD in front of the NIH’s committee on Genetic Discrimination in 2004.

Two months ago I had the bitter-sweet experience of traveling to Colombia, South America, to the city of Juan de Acosta to help impoverished families struggling with HD. In case you haven’t heard of Juan de Acosta, it has the distinction of having the second largest concentration of those with HD in the world, right behind Lake Maricoba in Venezuela.

I was privileged to be able to take over 500 pounds of clothing, the first information they had ever received on Huntington’s Disease (in Spanish of course) and over two and a half million pesos which was used to provide assistance to 20 families for two months each (not hard when the average monthly income there is only $40 US dollars). In addition to the normal complications we have in dealing with our loved ones with HD, they are doing it, most without running water, transportation and medications and some without even running water and electricity! I hope to be able to return to help more families this September.

During the years I have come up with a list of recommendations to help each of us live positively with HD.

One: I’d like to start with a true story called Three Strings. It’s an attitude and a lifestyle that I commend to all of you:

“On November 18, 1995 Itzhak Perlman, the violinist, came on stage to give a concert at Avery Fisher Hall at Lincoln Center in New York City. If you have ever been to a Perlman concert, you know that getting on stage is no small achievement for him. He was stricken with polio as a child, and so he has braces on both legs and walks with the aid of two crutches.

To see him walk across the stage one step at a time, painfully and slowly, is a sight. He walks painfully, yet majestically, until he reaches his chair. Then he sits down, slowly, puts his crutches on the floor, undoes the clasps on his legs, tucks one foot back and extends the other foot forward. Then he bends down and picks up the violin, puts it under his chin, nods to the conductor and proceeds to play.

By now, the audience is used to this ritual. They sit quietly while he makes his way across the stage to his chair. They remain reverently silent while he undoes the clasps on his legs. They wait until he is ready to play.

But this time, something went wrong. Just as he finished the first few bars, one of the strings on his violin broke. You could hear it snap - it went off like gunfire across the room. There was no mistaking what that sound meant. There was no mistaking what he had to do.

People who were there that night thought to themselves: ‘We figured that he would have to get up, put on the clasps again, pick up the crutches and limp his way off stage - to either find another violin or else find another string for this one.’

But he didn't. Instead, he waited a moment, closed his eyes and then signaled the conductor to begin again. The orchestra began, and he played from where he had left off. He played with such passion and such power and such purity as they had never heard before. Of course, anyone knows that it is impossible to play a symphonic work with just three strings. I know that, and you know that, but that night Itzhak Perlman refused to know that. You could see him modulating, changing, and recomposing the piece in his head. At one point, it sounded like he was de-tuning the strings to get new sounds from them that they had never made before.

When he finished, there was an awesome silence in the room. And then people rose and cheered. There was an extraordinary outburst of applause from every corner of the auditorium. We were all on our feet, screaming and cheering; doing everything we could to show how much we appreciated what he had done.

He smiled, wiped the sweat from this brow, raised his bow to quiet us, and then he said, not boastfully, but in a quiet, pensive, reverent tone, ‘You know, sometimes it is the artist's task to find out how much music you can still make with what you have left.’ (Jack Riemer, Houston Chronicle)

Think about what he said one more time- “You know, sometimes it is the artist’s task to find out how much music you can still make with what you have left.” Each of us has lots of beautiful music left in us and all we have to do is start learning how to play it!

Two: Become familiar with what I like to call the “softer” symptoms of HD. I define the “softer” symptoms as the behavioral, emotional and cognitive symptoms of the disease. These are, beyond a doubt, the most damaging to the Person with HD (Phd) and their loved ones. Note: I like to call the person with HD a Phd instead of the sick one, ill one, crazy one, etc. as I believe it renders dignity where it is deserved. If you will notice, it’s also spelled a different way- I always capitalize the “P” and make the “hd” in small letters because we are bigger than it and will eventually beat it one day! Although these are the most important, they are unfortunately still the least understood, talked about, researched, and sometimes the hardest to recognize. These softer symptoms are the ones that cause the Phd to get fired by their employer, arrested, divorced, and that destroy family relationships with siblings, children and spouses. An abbreviated list of them includes:
A) loss of short term memory;
B) impulsivity;
C) loss of inhibitions which cause the Phd to say hurtful things, get arrested for public masturbation, walk outside naked, have affairs, get caught shoplifting or embezzle millions of dollars;
D) loss of forward or consequential thinking which causes the Phd to not see the consequences of rash purchases, hitting a policeman who has falsely arrested them for being drunk in public (can you see how dangerous it would be to combine loss of inhibitions with loss of consequential thinking and impulsivity! Three strikes before you get started!);
E) loss of emotional gaiting which causes rage attacks and/or an increase in emotional blunting which makes the Phd seem cold and uncaring;
F) unawareness - I prefer to call this “unawareness” rather than “denial” because I feel this is another HD symptom and not the Phd purposely trying to be an SOB. Unawareness causes the Phd to not know that they are unable to continue driving (despite their car looking like it took last place at a demolition derby) or that they need to take their prescribed medications. Other “softer” symptoms include:
G) the inability to notice lowered work quality;
H) the loss of ability to care about personal hygiene; I) impaired judgment and reasoning;
J) self-centeredness;
K) obsessive and compulsive behaviors; and
L) loss of ability to initiate conversations. It’s also important to note that if you are experiencing any of these HD symptoms they will usually be “uncharacteristic” of your prior behavior and demeanor.

Three: While you are still able, involve yourself in the service of others so you don’t have time for a pity party. One of the best ways to do this is volunteering. Volunteering can fill the void left from not being able to drive and work any more and can restore your feelings of self-worth and meaning to your life again.

Four: Participate in ALL research studies. I hear everyone complaining that we don’t have a cure yet and then when we have the opportunity to participate in research studies we don’t. PHAROS is a sad example of what I’m talking about- approximately 250,000 at-risk individuals who could have participated and the study could barely get 1000 participants. This is appalling. Our numbers are small and so everyone really counts in these types of studies. Participate to make a difference.

Five: Wrap up things in your life and do some things you’ve always wanted to (within reason), so you have no regrets later.

Six: Learn to understand researcher’s jargon. When they say they’ve created “HD-like” symptoms or “HD-similar symptoms” in a mouse and made them go away, remember this is not the same as actual HD symptoms and a mouse’s brain or the eye of a fruit fly are not the same as a human brain- it’s a start that will lead to more discoveries later but learn not to get too excited and then depressed later if the studies don’t pan out. I think you get my point.

Seven: Learn to have hope today in improved CARE. As Dr. Edmund Chiu said in 1999 in his talk in New York City: “We hope and pray for a cure but there is not a cure for Huntington’s Disease, not yet. Good people are working on it of course. In the meantime, other good people are working on the only alternative available – care. The kind of care that doesn’t abandon the Huntington’s Disease person, the kind of care that tries to make full use of every single brain cell the Huntington’s Disease person can command [sounds like Three Strings], the kind of care that understands occasional erratic behavior.”

When Dr. Jane Paulsen was speaking to our retreat two years ago a caregiver asked her how to tell if their spouse’s behavior was HD-affected or if they were just trying to be an SOB. I will never forget her answer- “I would error on the side of compassion and then it really doesn’t matter, does it?” So, caregivers, in order to allow your loved ones to continue making as much beautiful music as they can with only three strings I would also ask you to “error on the side of compassion” too and Phds, I would strongly encourage you not to take advantage of this!

Eight: Focus on what you can still do instead of what you can’t.

Nine: If you are “at-risk” go to www.hdlighthouse.org and download my “At-Risk Preparation Checklist.” It will help you prepare like never before and then you can follow my admonition: “Prepare like you will get HD and then live like you won’t!” If you are totally prepared and still get HD it really won’t matter will it as you and your family will be better prepared financially, medically, and emotionally to minimize the devastation than those who persist on being ostriches with their heads in the sand pretending that if they ignore HD it will ignore them. This worn-out philosophy hasn’t worked yet because your 50/50 chance is not good odds. We owe it to ourselves, our families and our friends to prepare early while we can, long before HD-affected judgment and reasoning taint or preclude our true wishes and desires from being documented.

Ten: Learn the warning signs of depression so you can help yourself and your loved ones. Did you know that the suicide rate for those with HD is 10-12 times the national average? This is unconscionable and should not be allowed to happen. The reason so many Phds end up as causalities of suicide is two-fold:
1) The biological cell death in the brain causes a chemical imbalance and
2) Phds also experience situational depression at the same time, wondering how much longer they are going to be able to work, to be intimate with their spouse, to walk or talk. Please realize that almost everyone else around us is already on anti-depressants just trying to cope with situational depression, let alone the biological-caused depression at the same time.

Eleven: Find humor in HD. Look closely at the bag I’ve been carrying around with me yesterday and today. It has a picture of the Scarecrow from the Wizard of Oz on it with his famous saying: “If I Only Had A Brain.” Once you become familiar with the “softer” symptoms make a game out of trying to stay ahead of HD by compensating at work by doing such things as using 3x5 cards to take notes, using Post-It-Notes all over your computer screen, putting footers on everything you work on to help you remember the next day where your documents are saved. When you forget how to shift your car, switch to a car with an automatic transmission and when you are unable to drive it any more, buy a big tricycle so you can still get out and go to the store. See what I mean? Keep telling your HD: “You think you’ve got the best of me because I can’t do this any more, well think again because now I’m going to do it this way!”

In closing I would like to encourage every one of you to continue making beautiful music with what you have left. Remember, you might have to recompose or rethink things in your head a little differently. You may have to do things in a different way today than you did yesterday or adjust your attitude a little bit more towards the positive side but I promise you that the music you make while you have HD will be more memorable and more sacred than any that you have ever made before. May God bless everyone with HD!