Luckily, you and I don’t have to ask any blind seers for the best ways to prepare for Huntington’s Disease, or fumble about as if we were blind ourselves and miss the mark completely. I feel a little like Tiresias in that I have been blessed with wisdom after helping hundreds of persons with HD and their families who, for the most part, haven’t prepared adequately. I would like to share with you my feelings on the importance of preparing so that hopefully my “insights” will benefit you and your family! Rest assured that deciding not to test in the absence of treatment or a cure doesn't mean that you should neglect preparing for a future which may include this despicable disease. Good preparation IS hopeful about the future because you can ensure that you will have years of quality life and ample resources to enjoy them more fully!
Have Renewed HOPE In What YOU Can Proactively Do Today
I share the optomism of the caring HD expert Dr. Edmund Chiu from Australia who wrote: “To provide hope. Not hope for a cure but hope for a better life. And then, hope for the cure to follow…We hope and pray for a cure but there is no 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.” (“Understanding Behavioral Changes in Huntington’s Disease,” Dr. Edmond Chiu, New York University Medical Center, September 12, 1989)
Don’t be dissuaded by those who mistakenly believe that the only hope for HD is in finding a cure or effective treatment. Some who believe this don’t adequately prepare because they think by the time they get close enough to being symptomatic themselves there will be a cure and all will be well. But what if you don’t adequately prepare and you begin symptoms and a cure hasn’t been discovered yet?
Some respected professionals may have unwittingly made recommendations imbued with futility which have taken away your desire to prepare, but remember, these remarks can sometimes be better understood based on their medical and scientific backgrounds or based on any bias granted them by their own comfortable financial position. I think some have blinders on by mistakenly thinking that the only hope for HD is in finding a cure or effective treatment.
I also believe that they don’t think of the consequences to individuals and their families who do not enjoy the same financial well-being and security as they do. If they did, I know they wouldn’t be discouraging so many to not do anything, including testing (anonymously of course to prevent genetic discrimination) or adequately preparing. Most of the nay-sayers for preparing will never have to go on state-funded welfare to have their basic medical needs met or survive on a paltry $700 a month Social Security Disability check. When reading or listening to those hollow voices remember that you and I will not have the same “assurances” that they do, unless we prepare early and well.
“A man surprised is half beaten.” (Thomas Fuller Gnomologia, 1732)
The quintessential question to be answered is why should anyone want to be tested for HD because there is not yet a cure, or even one effective treatment? Put another way- Is it a terrible thing to be wise when there’s nothing you can do with that wisdom? The fallacy here is that there is something that can be done right now if you’re at-risk for Huntington’s Disease and that is you can prepare.
So how does one prepare adequately then if they are at risk? As I stated in the “Huntington’s Disease ‘At-Risk’ Preparation Checklist” I wrote: We must “prepare like you are going to get it and then live like you won’t! By doing this, you are being proactive in minimizing the financial and emotional damage that can result from HD if preparation isn’t adequate. Once HD begins, it can adversely affect insight, emotions and judgment [and you may not see a need to prepare].
Of course, you wish you were not at risk, but you are, so look it right in the face! You can no longer bury your head in the sand and hope for a better day- YOU must take responsibility for that day NOW, for yourself and for your loved ones!” I have hope in an improved quality of life today because of preparing adequately years ago- not for HD, because I didn’t even know I was at-risk for it, but because of my second genetic disorder, hemophilia B, a bleeding disorder that causes me to not stop bleeding once I’ve been cut or bruised. I prepared early to protect myself and my family just in case hemophilia happened to cripple or incapacitate me later in life. As fate would have it, I had to go out disability first because of HD, not because of my hemophilia B, never-the-less, I am one of the few lucky ones who had prepared.
What It Means to Know
I agree that sometimes not knowing something is often more comfortable than knowing it, unless what you are being willfully ignorant of or denying packs such a destructive punch as HD, if you are not sufficiently prepared. “Foreknowledge about disease affords individuals time to strengthen support systems and reshape personal goals. This knowledge can guide plans regarding child-bearing and careers. It can teach people to let go of the trivial things that threaten to spoil a moment and empower them to take action prior to the onset of illness. These measures may include joining a support group and moving closer to family or, alternatively, finding a one-story home and making appropriate financial arrangements. A discussion about end-of-life options might be initiated, if it has not already begun.” (“Prescription for Prophecy: Confronting the Ambiguity of Susceptibility Testing,” Hyang Nina Kim, University of California San Francisco School of Medicine, JAMA. 1998; 280:1535-1536)
My Personal Testimony to the SACGHS Committee at the NIH
In October of 2004 I had the privilege of testifying before the Congressional Sub-committee on Genetic Discrimination in Washington, DC: “Proper medical and mental health care are not sought on a timely basis that could help reduce suffering and raise everyone’s quality of life. Open communication is almost non-existent between parents and their at-risk children regarding how they can better prepare to minimize the destruction of HD if they do have it. HD must be kept shrouded in secrecy to protect everyone.
For the same reason, at-risk children are not encouraged to: seek good educations, college educations, careers with companies who offer group benefits; and marriage and childbearing options, including adoption. Misdiagnosis and the same thing with mis-medication occur because one doesn’t know, or knows but can’t be honest with their doctors and other health care providers for fear of being discovered. Healthy living habits aren’t adopted either, early on to postpone onset.” (Testimony in front of Congressional Sub-committee on Genetic Discrimination by Phil Hardt, Arizona Affiliate of HDSA, From the Winter 2005 Hopes & Dreams newsletter of the Illinois Chapter, HDSA, http://www.lib.uchicago.edu/~rd13/hd/testimony.html and www4.od.nih.gov/oba/SACGHS/meetings/October2004/transcript/Hardt_trans.pdf)
Unnecessary “Bleeding In the Trenches” Continues
I am tired of seeing people suffering needlessly who haven’t prepared adequately and it’s time to draw a line in the sand and say- NO MORE, WE’VE SUFFERED ENOUGH! From this point on I wish everyone would act and think smarter than before while preparing for HD. Over the years I have spoken to thousands of individuals with HD, and on a daily basis I have the privilege of helping those in Arizona who have HD raise their quality of living by talking them to doctor and dentist appointments, helping them fill out Social Security Disability paperwork, taking them to research studies, shopping, to court appearances, and helping those who are homeless find permanent living arrangements. I am heartbroken as I help these individuals who haven’t prepared adequately because of lack of hope and little to no prior preparation.
I am saddened even deeper to know that the massive devastation they are experiencing financially, emotionally and medically could have been minimized, had they not played the ostrich with it’s head in the sand and prepared sooner and more thoroughly. By the time you become symptomatic the time to prepare is over and there is little you can do to obtain a higher quality of living at that time.
The Five Foolish and Five Wise Virgins
I want to review with you the parable of the ten virgins found in the Bible. Five were wise and had collected oil in their lamps in preparation to meet the bridegroom. The other five were foolish and had not accumulated any oil in their lamps. “While the bridegroom tarried, they all slumbered and slept.” (Holy Bible, KJV, Matthew 25:5). When the bridegroom came at midnight the time for the foolish to prepare by adding oil to their lamps had passed and so it is with those who are at-risk for HD who wait too long to prepare. The foolish then said unto the wise: “Give us of your oil; for our lamps have gone out.” (Holy Bible, KJV, Matthew 25:8) The wise answered and told them they could not, or their own oil would run out. A quick perusal reveals that they weren’t being cruel because how could they give the “unwise” the years of preparations they had made?
You can be like one the five wise virgins who added oil to their lamps by preparing long before the need by securing sufficient insurance (short and long term disability, life, and long term care); getting a job with a company who offers group medical benefits without having to take a physical to show “proof of insurability;” you can stay with your same employer if you are getting close to being tenured so if you are unable to work (for any reason, not just HD) you will be able to keep the same medical, dental, vision and mental health benefits, and at the same price you are currently paying! You would be wise to also encourage your spouse to get as much education as possible so in the event that you can’t work any more, they will be able to get a higher paying job to provide for you and your family.
In my example, the five virgins who were wise also took care of medical and financial preparations early so they could specify in their wills who they wanted to be their guardians and what quality of living level they wanted until the end. Can you see that by beginning to prepare now, you will guarantee you and your family a higher quality of living than one offered while on welfare? “Caring is a positive contribution to quality of life, it is not a second-rate substitution for curing.” (Dr. Edmund Chiu)
Ignorance Is A Double-Edged Sword
When Oedipus finally uncovers the truth about his incestuous relationship with his Mother, I am sure he also felt like a modern version of Tiresias’ quote: “Where ignorance is bliss / ‘Tis folly to be wise” (Thomas Gray, “On a Distant Prospect of Eton College,” http://www.library.utoronto.ca/utel/rp/poems/gray2.html). In other words, I am sure that Oedipus probably did feel better, at least for a while, not knowing the truth because the truth was so painful.
However, I don’t want you to live in any temporary happiness like an ostrich with it’s head buried deep in the sand thinking “all is well” around you until you remove your head one day only to find that you do indeed have HD and that because you haven’t prepared adequately you are now cruelly forced to live in poverty with substandard and inadequate medical, dental, mental health, and long-term care coverages. Don’t do yourself and your loved ones a huge disservice by being tricked by the “ignorance is bliss” mantra. In other words, how can you truly live a full and productive life not caring enough to prepare? How can wisdom be unprofitable unless it is not used? Please don't try to outsmart your 50/50 odds for as Shakespeare said: “Better a witty fool than a foolish wit.” (Feste: Twelfth Night, I, v)
To learn more about preparing for the future, visit Phil's section on Navigating Life with Huntington's Disease at the HD Lighthouse: http://www.hdlighthouse.org/abouthd/navlife/