Huntington's Disease
At-Risk Preparation Checklist
Written by Phil Hardt
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 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, 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
have 10 years of service before becoming disabled, AND if 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 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 be
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 (insurance) 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 states 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! 
