On September 12, 1989 Dr. Edmond Chiu presented his lecture Understanding Behavioral Changes In Huntington's Disease to the HDSA. Dr. Chiu's simple and profound standards for family care have not been met in the US.
Phillip Hardt renews Dr. Chiu's call for reform. The message was very well received. Phil was interrupted about 6-7 times with applause after each section and then received a rousing standing ovation at the end. It was overwhelming.
Good morning. I wish to thank HDSA and Athena Diagnostics for this opportunity to participate on this Family Services and Care Forum panel.
My name is Phil Hardt and I'm living my inheritance- HD. I wish my genes would have come pre-shrunk, but they didn't!
I am 45 years old and have been unable to drive for five years and work for four. I also have eight children. Three are biological (one negative and two still at risk) and five adopted. Of the five that we have adopted, three have severe handicaps. Six of my eight children are still living at home and my youngest daughter is only five years old.
First of all I want to praise HDSA, under the leadership and direction of Barbara Boyle, for the momentum at which new discoveries are beginning to make the headlines! These are very exciting indeed. I would also like to personally thank all of the researchers, scientists and doctors here today whose valuable contributions have brought us closer to the goal of everyone here - a cure!! We would not be where we are without you!
However, don't start resting on your laurels yet as I want to talk candidly about a few other areas of concern where I feel improvement needs to be made immediately.
THE PROBLEM AND THE CHALLENGE
I believe we are overlooking many HD-affected individuals and families who are "bleeding in the trenches," at this very moment while focusing primarily on finding a cure! I agree with Dr. Edmund Chiu, Senior Lecturer in Psychiatry University of Melbourne, Australia, whole-heartedly when he said: "Caring takes precedence over curing when no cure is available. In the United States as well as Australia, too much emphasis is placed upon curing a disease and not enough on caring for a disease."
I believe we have too many families falling apart at the seams because of two main problems, 1) lack of education for everyone regarding the "softer" symptoms of HD and the destruction they cause, and 2) lack of resources and medication available to confront what I like to call these "softer" symptoms of HD, which, in my opinion, are far more devastating than chorea to the individuals and their families.
When I talk about the "softer" symptoms of HD I don't mean the physical hallmark of easily-diagnosed chorea. What I like to call the "softer" symptoms of HD are the emotional, cognitive, behavioral, personality change, and loss of social inhibitions, those symptoms that start subtly and are not easily recognizable, but that perhaps do the most immediate and long-lasting damage to the Phd or person with HD and their family. At least these are the ones that I've had the most trouble from. I believe that everyone wins when these "softer" symptoms are addressed. The Phd's quality of life is improved and the caregiver's quality of life will improve.
We need a national program to educate everyone about depression and suicide. It is so easy to treat but so devastating if left unchecked. HD-related depression packs a double whammy so-to-speak, depression is caused not only from the biological effects of the disease but also as a reaction to it. A reaction to losing everything which has helped define you as a productive and worthwhile member of society such as your work, freedom and role within your family. We need to help everyone to understand very early that untreated depression can lead to suicide. We should continue to educate and reeducate, and not be satisfied with our efforts until the appalling suicide rates of those with HD are not 6 to 7 times the national average!
ASSISTED LIVING/NURSING HOMES
We need to provide our expertise, training and funding to establish HD-friendly 'assisted living homes,' staffed by competent, HD knowledgeable professionals, around the country to help those who are still capable of living by themselves to maintain their independence. In addition, we need to provide our expertise, training and funding to establish regional HD-friendly nursing homes so that no family will be too far away to visit their loved ones frequently, and so that they can be assured that their loved ones are being cared for by compassionate professionals who thoroughly understand this disease and its complexities. These can also be used as respite care providers when loved ones need time to recharge their batteries! I would hope that when we do so, we would use the enlightening philosophies of Dr. Chiu from Australia as our guiding light to run them in order to assure that our loved ones receive the highest "quality of life" possible.
I think we need to begin new clinical studies, thinking 'out of the box' as far as new medications are concerned. I would like to see additional medications that are already being used successfully to improve cognition in Alzheimer's Disease and other related disorders, such as Aricept, be tried to improve the "quality of life" of persons with HD. More emphasis needs to be placed on meds to help the family cope with the softer symptoms of HD, the emotional, cognitive, behavioral, personality changes, and loss of social inhibitions, while still maintaining the highest "quality of life" possible for the person with HD.
We need to provide more assistance and guidance to those families who get a call from their son or daughter, who has Juvenile HD, while they're in jail for shoplifting or drug and alcohol abuses, or families who need guidance because their father got apprehended for masturbating in public. These are all real needs of real people with HD today.
We need counseling manuals specifically for use by those counselors and therapists in our own communities to help those families with HD-shattered marriages or relationships. Manuals could also contain useful information to discuss with those going through the pre-testing protocol too. I know when I went, I found out that I knew more than they did, and believe me, that wasn't a whole heck-of-a-lot! I ended up "counseling" them on what HD was, not them counseling me. The Centers of Excellence are too few and far between for many to receive this type of ongoing counseling.
LONG-TERM DISABILITY INSURANCE
We need to increase our efforts with national emphasis on the growing number of those at risk and encourage them to purchase as much long-term disability and care insurance as they can immediately, not as an admission that they may get the disease, but as just good common sense that any other person would do.
SOCIAL SECURITY DISABILITY
We need to assist those individuals who need help completing a social security disability application in such a manner that they don't get turned down and denied these needed monies. They should not be subjected to the stress of having to reapply or have to subject themselves to a Social Security-appointed doctor who knows nothing about HD.
LIVING WILLS, TRUSTS, ETC.
We need to do a better job educating everyone regarding the necessary legal planning to protect our spouses and families such as living wills so you don't have to subject them to uncomfortable decisions about whether-or-not you want a feeding tube or to be kept alive artificially later. Durable powers of attorney are needed to make the transition easy after dementia progresses, family trusts to prevent our life insurance from going into probate for a year. These costs are insurmountable to many.
The focus needs to continue regarding the education of ALL neurologists, psychologists and psychiatrists. This will go a long way to eliminate misdiagnosis and inappropriate medications prescribed which in turn would greatly enhance everyone's "quality of life."
I also believe that there should be input by those with HD into all of the recommendations I am making here today. There are many Phds who would be more than happy to contribute their knowledge of living daily with this disease.
As each generation passes, the next has almost exponentially more individuals at risk. We need to prepare better NOW for our children and grandchildren's generations or we have failed them indeed. I believe the numbers reported to be at risk are grossly understated and even as stated are staggering to contemplate. Will we be prepared for this onslaught of additional persons "bleeding in the trenches" or will insight, education, and improved caring increase their "quality of life" far beyond ours? Thank you for your valuable time and may God bless everyone affected by HD
Response to this article:
P.S. The response to the "Reform" article is still overwhelming. Tremendous grassroots support all over the country. Even had two brothers send me a note stating that they would be splitting up everything that they raised and donating half to research and half to care after reading the article! Isn't that wonderful?...Phil