Making Better Decisions Now

This is a republishing of an article posted to the HDlighthouse back in March of 2002.
Over the years I have come to the conclusion that HD is a managable condition. I once complemented a fellow runner in a race on his good time and his rested look so soon after a race. He told me he had diabetes, that many in his family had suffered terribly from the condition and died. He said he had only one big choice to make in life, to be healthy or to suffer. Managing HD requires informed planning and executing those plans. This is where Phil really shines.
Phil Hardt
Author: Phil Hardt
"I for one am tired of seeing suffering, grief and heartache wherever I have been to speak because there is nothing out there to warn and help those who are at-risk, or gene positive and still asymptomatic, to make better decisions NOW to protect themselves, their families and their futures." 16-Mar-2002
Making Better Decisions Now
Phil Hardt

If we re going to break this Ill-fated Cycle of HD- of not being adequately prepared, we've got to begin doing things differently, and soon! Hopefully the HD At-Risk Preparation Checklist will help! I know what I'm asking everyone to do is hard and will require a shift in paradigms, but it will be so worth it later! I feel the earlier, meaning younger, we begin talking with those who are at-risk, about what they should do to prepare, then maybe they will not have to deal with as much heartache and grief as we see today. When the next generation becomes symptomatic I hope most of them will be better prepared than their parents were to deal with HD head-on because they were far better prepared for the battle!

Many who are at-risk ask me to recommend how to prepare far the 50% chance that they will become symptomatic with HD. My simple answer is, prepare like you are going to get it and live like you will not! By doing this, you are in no way admitting that you will get HD, you are simply being proactive by minimizing the financial and emotional damage that can result from HD if you are not adequately prepared. A dear friend said, ?This is not your fathers HD. It is out of the closet, in your face, here and now." We can no longer bury out heads in the sand and hope for a better day- WE must take responsibility for that day NOW for ourselves and for our loved ones. I am recommending some difficult changes NOW because I know all too well that if you procrastinate, and HD begins adversely affecting your insight, emotions and judgment, you may not see the need for change and you could end up lost and unprepared. I wish with all my heart that you were not at-risk, but you are, so lets look it right in the face. The following are ?common sense steps?to protect you and your family-just in case:

  • Sign up for short-term (STD) and long-term disability (LTD) insurance with your employer. Most companies offer open enrollment times when you can add or delete coverage with no questions asked. Then, if you can no longer work because or ANY disability, including HD, you will continue receiving the same amount of money as when you were working full-time!
  • Sign up for the maximum amount of life insurance possible without having to show ?proof of insurability? with your employer.
  • Add two extra riders on to your life e insurance policy which usually do not cost extra: 1) Children?s Rider- provides ~ $10,000 coverage per child, which they can convert at age l8 to their own $50,000 policy WITHOUT showing proof of insurability. If you are HD positive we, your children are then at risk and they may not be able to get their own policy. 2) An Accelerated Benefits Rider- allows you to use up to 50% of the face value of your policy to pay for nursing home care, if necessary.
  • Stay with you current employer if you are already tenured, or if you are 10 years of service before becoming disabled. AND you are covered by STD and LTD, you will continue your current medical, dental, vision and mental health benefits, at the same amounts as you are currently paying, for as long as you are disabled. In addition, you will continue accruing service time towards retirement as long as you are disabled.
  • Obtain as much education and! or marketable trade skills as possible so you can work for a company which offers group benefits. Group benefits are usually less expensive and you do not have to show ?proof of insurability" when when signing up for the policy.
  • Encourage your spouse or partner to complete their education also. If something happens to you and they must work, he/she will ho able to find a nicer and better paying job if they are prepared.
  • If you are self-employed, these types of insurances may be unaffordable because of the cost and possible requirements to show ?proof of insurability.? If you indicate on your application that there is HD in your family you are likely to either be denied insurance or offered a policy with extremely expensive monthly premiums. On the other hand, if you do not answer all questions honestly, and this is discovered, the insurers can void your coverage. I personally had to bite the bullet and work for a large company when I would have much preferred to work for myself. But now I am so thankful because my family does not have to sacrifice- they are taken care of. It is well worth the personal sacrifice- and you can follow your dream on your own time.
  • Get your financial affairs in order by creating a Last Will and Testament, a family trust (to avoid money being held in probate for the war after your death) and a Durable Power of Attorney (to assign the individual who will manage your financial affairs). These are difficult issues, but you cannot wait because once the ?softer? signs of HD affect your thought process, you may not want to complete these necessary steps to protect you and your family from financial hardship. A lawyer or legal association can help you determine your states requirements.
  • Get your medical affairs in order by completing a Living Will and Durable Medical Power of Attorney. NOW is time to make known your personal desires regarding the quality of life you want to maintain if you become symptomatic. Advise your family regarding issues such as using a feeding tube, donating your organs, donating your brain to research, and the use of mechanical life support. If you procrastinate , and become less competent and unable to make these decisions for yourself, SOMEONE ELSE WILL MAKE THEM FOR YOU. Do not put your family through the heart wrenching agony of making these end of life decisions. If you procrastinate, you may not realize the necessity of making those decisions as clearly as you do now. HD affected emotions, such as fear, paranoia, lack of trust and blunting may cause you not to care, or you nay not see how these decisions will affect your future and your family?s future. A lawyer or legal association can help you understand your state?s requirements.
  • Begin immediately to eliminate stress from your life. Eat nutritiously and maintain a healthy lifestyle. Exercise daily to keep fit, strong and flexible. Read and challenge your brain to keep it sharp and limber. Do not overlook your emotional and spiritual well being either. The better you feel physically and mentally, the easier it will be to cope positively, if you inherit HD.
  • Immediately educate yourself about the variability of HD symptoms, especially the ?softer? signs, including the emotional, behavioral and cognitive changes. such as depression, paranoia, impulsivity, anger. withdrawal and loss of social inhibition. You must understand these symptoms so you and your family can recognize them and cope with them positively. Your extended family members should be included as well- share your knowledge and understanding with them so they may benefit too.

Starting to do these recommendations now, while you?re still playing with four strings in this concert called life, will help make it much easier if your fourth string snaps and you are forced to continue playing with only three! As Jack Reiemer said in the Houston Chronicle: ?So, perhaps our task in this shaky, fast-changing, bewildering world in which we live is to make music, at first with all that we have, and then, when that is no longer possible, to make music with what we have left.?

May you continue to make beautiful music forever! ......Phil Hardt