HD At-Risk Preparation Checklist

By Philip Hardt

From the Fall/Winter 2003 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.

Many who are "at-risk" ask me to recommend how to prepare for 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 father's HD. It is out of the closet, in your face, here and now." We can
no longer bury our heads in the sand and hope for a better day – WE must take responsibility for that day
NOW for ourselves and 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, 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:

  1. 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 of ANY disability, including HD, you will
    continue receiving the same amount of money as when you were working full-time!
  2. Sign up for the maximum amount of life insurance possible without having to show proof of
    insurability with your employer.
  3. Add two riders onto your life insurance policy which usually do not cost extra: 1) Children's
    Rider provides $10,000 coverage per child, which they can convert at age 18 to their own $50,000
    policy WITHOUT showing proof of insurability. If you are HD positive, 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.
  4. Stay with your current employer if you are already tenured, or if you are close to reaching
    your 10-year anniversary with the company. If you have 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 amount 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.
  5. 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 signing up for the policy.
  6. Encourage your spouse or partner to complete their education also. If something happens to
    you and they must work, he/she will be able to find a nicer and better paying job if they are prepared.
  7. 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!
  8. 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 year after your death) and a Durable Power of
    Attorney (to assign the individual who will mange your financial affairs). These are difficult
    issues, but you cannot wait because once the "softer" signs of HD affect your thought processes,
    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 state's requirements.
  9. Get your medical affairs in order by completing a Living Will and Durable Medical Power of
    Attorney. Now is the 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 these 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 may 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.
  10. 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.
  11. 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.

Created and maintained by Renette Davis. Send comments to Renette by clicking here.

Created: Feb. 8, 2004.
Modified Nov. 28, 2010.