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You have found this document probably because you are a parent or in a extended-parenting role (if you are a newly diagnosed ataxian go to www.internaf.org/ataxia.html), your ataxian has been recently diagnosed, and you are furiously searching for information while trying to keep your emotions under control. Many parents have been where you are and every one of us sympathizes with you right now for having to go through this. The information you seek is strewn across the web, nuggets of rich knowledge hidden often times in tremendous trivia, mis-information and requirements that you be a "good" web searcher. This guide is intended to give you a large kick-start in your search for information. We who have already searched offer this to you as a better starting point in your search. When I presented this material at the 2003 NAF Conference in Atlanta I used Emily Perl Kingsley's "Welcome to Holland" story as an introduction, and I offer it now to you because keeping life in perspective is vitally important for us as parents; our children look to us moment-to-moment for balance and perspective. The story will grow on you as you work through this initial transition as the parent of a newly diagnosed ataxian. My last thought to you is that this document is not free, and it is not finished. Many hours went into its creation, I updated it on March 4, 2017 and it now waits for you to add to it. As you use this guide to search and you find new information, or you see gaps in this guide's coverage, you now have the opportunity to help the next new parent have a better starting point in their search. Email me, Paul Konanz at pkonanz@comcast.net with your large or small nuggets of freshly found knowledge. Sincerely, Table of Contents FIRST YOU
Mental Health
Great websites
Giving information to your ataxian, family and friends
Federal
Get a computer and get online THEN YOUR ATAXIAN
Emotional Health
Handling strangers ADDENDA I. Coping with Loss (excerpt) - Five Stages of Grieving II. Working Through the Stages of Grief III. Sure Steps to Caregiver Burnout FIRST YOU HEALTH - You are the MOST important person! Why? Because if you are not there for your child, they lose.
GAINING KNOWLEDGE - Ignorance is not bliss!
PLANNING AHEAD - Don't back into the future!
FINANCIAL/BENEFITS SUPPORT - You must go find it! And advocate for it!
WHAT CAN I DO?? - Learn and participate!
THEN YOUR ATAXIAN
Please
remember to Email pkonanz@comcast.net
with any The stages of grief are:
After a disaster you will definitely go through the stages of grief, but you might not go through each stage only once, and you might not go through them in the order specified. For instance, you might move from anger to bargaining, then back again, before you move on to depression, and finally acceptance. It is important to remember that not all people move through the stages with the same intensity of emotions, or at the same rate. These differences in how and when individuals experience each stage can add stress to relationships. For example, a husband who is in the anger stage may be very impatient with a wife who is still in denial: "I can't understand why she's still got her head in the sand." She, on the other hand, may be wondering: "Why is he so angry when there's nothing to be angry about?" Denial: "No, not me, it can't be true." Anger: "Why me?" Bargaining: "Yes, me, but...." It allows you to "frame" the crisis so you can manage it. Bargaining may help you cope with feelings of sadness without experiencing deep depression. Depression: "There is no hope." A crisis entails loss, which is followed by sadness. Acceptance: "It's all right now." Once the preceding stages have been completely worked through, you will finally be able to accept what has happened, and you may even be stronger than you were before the disaster occurred. Working Through the Stages of Grief (2002
NAF Conference, care of Sue Kittel) When one of our children receives a diagnosis of Friedreich's Ataxia,
the whole family can experience grief. The following list includes the
stages of a unique grief, called Anticipatory Grief. As most of us know, as we
cope
with a progressive condition like FA, we continue to grieve through
each
stage of change and progression. Sure Steps to Caregiver Burnout (Words of wisdom from Carmen Leal-Pock's presentation at the HDSA national convention in Rochester, NY, June 1997) From the Winter 1999 issue of Hopes & Dreams, newsletter of the Illinois Chapter, Huntington's Disease Society of America.1.
"Do it alone."
You
really don't need help from friends, family, and other caregivers. 2.
Don't pursue your own activities. Your
whole life should revolve around concentrating in the illness. And
never do anything silly, just for yourself -- you might forget, for
just a moment, the horrible situation the illness placed you and your
loved ones in. 3.
Forget about planning time for yourself alone or with others. If
you leave your "patient" alone or in someone else's care for
a few hours, who knows what might happen? 4.
Don't set limits on care giving activities. This is a 24-hour, 7 day a week job. In order to do it right, you need to respond to every request, right away! 5.
Spend holidays alone with the person with HD. Better
yet, arrange a stressful holiday gathering with as many activities as
possible, to prove that the person with HD is "the same as he or
she ever was." 6.
Engrave your plans in stone. It's
much better to "forget the whole thing" than to remain
flexible and risk having an alternative good time. If the person with
HD can't fully participate, he or she should just sit the whole thing
out. 7.
It's a waste of time to plan low energy recreation just for one
person. Better
to force him or her to participate as everyone else does. Constant
failure will reinforce the depressed outlook we are trying so hard to
maintain. 8.
Finally, never laugh about anything connected with the illness. This
is a serious topic. There is no humor in adversity. FA-SPECIFIC AREAS
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