RECENTLY DIAGNOSED
LATE ONSET ATAXIAN
GUIDE
Greetings! You have found this document probably because you are a recently diagnosed axatian (if you are the parent of a newly diagnosed ataxian go to FAPG), and you are furiously searching for information while trying to keep your emotions under control. Many ataxians have been where you are and every one of them 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 (http://www.nas.com/downsyn/holland.html) as an introduction, and I offer it now to you because keeping life in perspective is vitally important for each of us. The story will grow on you as you work through this initial transition as 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 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 responsibility to help the next new ataxian have a better starting point in their search. Email me, Paul Konanz at pkonanz@prodigy.net with your large or small nuggets of rich knowledge.
Sincerely,
Paul Konanz
Table of Contents
II Working Through the
Stages of Grief
III Sure Steps to Caregiver Burnout
V Other
“Recently Diagnosed” Guides
…. The stages of grief are:
§
Denial
§ Anger
§ Bargaining
§ Depression
§ Acceptance
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.
(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.
We may feel some or all of these emotions during Anticipatory Grief.
1. Intense Sadness
2. Frustration
3. Guilt
4. Anger
5. Loneliness
6. Fear
7. Hope
What could hinder you?
1. Denial
2. Poor Communication
3. Other Complicating Factors (i.e.: other illness in the family, or financial
problems, etc.)
4. Lack of Support
How Can I Help Myself?
1. Keep communication open between you and your children, spouse and
one or two close friends.
2. Express your emotions (happy, sad, anger, etc.)
3. Take time to care for yourself.
4. Reach out for help
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.
(http://www.fortnet.org/fapg/sitemap.htm
v Possible medical symptoms/side effects to watch for:
Ø Cardiomyopathy
Ø Diabetes
Ø Scoliosis
Ø Vision
Ø Hearing (in crowds)
v Most talked about possible supplements
Ø Idebenone
Ø CoQ10
Ø NAC
Ø Amandatine
v Recent Medical research
Ø Idebenone
Ø CoQ10
Ø Mitoquinine
Ø CoQ10 with vitaminE
Ø Selenium
v Emotional effects: http://www.kidneypatientguide.org.uk/site/emotional.html
v Medical advocacy: http://www.lougehrigsdisease.net/als_legal_financial.htm, under Medicare advocacy
v ALS Survival Guide: http://www.lougehrigsdisease.net/