Jacob

Guide for Parents of a Recently Diagnosed Ataxian Return to Index

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,
Paul Konanz
3/4/2017


Table of Contents

FIRST YOU

Health

Mental Health
Marital Health
Physical Health
Take care of yourself as Caregiver

Gaining Knowledge

Great websites
Great magazines
Prognosis, progression and symptoms
Medical Research
Supplements
Schooling
Modifying your home

Planning Ahead

Giving information to your ataxian, family and friends
Your ataxian’s social life
First time experiences
As walking becomes more difficult for your ataxian
Help give them independence

Financial Benefits Support

Federal
State
County
Local

What Can I Do?

Get a computer and get online
Fundraise for your cure!
Help others
Advocate for your child

THEN YOUR ATAXIAN

Health

Emotional Health
Physical Health

"Normal" Life

Medical after 18

Ataxia Communication

Handling strangers
Confusion with drunk or drugs

ADDENDA

I. Coping with Loss (excerpt) - Five Stages of Grieving

II. Working Through the Stages of Grief

III. Sure Steps to Caregiver Burnout

IV. FA-Specific Areas


FIRST YOU

HEALTH - You are the MOST important person! Why? Because if you are not there for your child, they lose.

  • Personal Emotional Health
    • The grieving process
      • Understand the grieving process - see Addendum I
      • Anticipatory Grief - see Addendum II
      • Coping with the Loss Caused by Chronic Illness
    • Professional Counseling
      • You and the family; in individual and/or group settings
    • Informal Counseling
    • Read some books or articles on "loss". Bookstores and libraries have many
    • Guilt - Get rid of it! Don't waste your energy.
  • Marital Health - Now is the time to Love One Another!
    • Re-read Men are from Mars, Women are from Venus. Re-remember men and women deal with stress differently.
    • Pay more attention to each other. Talk! Pull closer, not away.
    • Be nice to one another; both are hurting.
    • Respite for parents is important and should be planned and intentional.
    • See "Caregiver" below
  • Physical Health - If you get sick or hurt because you didn't take care of yourself the child loses!
    • Eat properly, sleep and exercise
    • Learn how to correctly help move someone
    • See "Caregiver" below
  • Take care of yourself as Caregiver - Avoid burnout

GAINING KNOWLEDGE - Ignorance is not bliss!

PLANNING AHEAD - Don't back into the future!

  • Giving information to your ataxian, family, and friends
  • Your ataxian's social life
    • Involve your minor child in as many groups as possible to maximize the chance for making stick-around friends. Choose groups that have active adult supervision, and talk with the adult about inclusion.
    • Church, scouts, YMCA parent-child programs, school groups, make your house the place to be, special interest groups, etc.
  • First time experiences
    • Until The Treatment arrives your child’s ataxia will progress. Identify every physical experience you think they deserve to have and you can afford then set about to make sure they have the chance to do it, as soon as reasonable. If they can do it at least once they’ll never have to say they couldn’t do it!
  • As walking becomes more difficult for your ataxian
    • Become knowledgeable fo the pros/cons of canes, walkers, and wheelchairs
    • Improve accessibility
      • Horizontal handrails in your home's hallways?
      • Remove loose throw rugs
      • Bathroom grab bars
      • Ensure the school is accessible and safe; access/seating in rooms. See Schooling above.
    • Help give them independence
      • Commensurate with their age and behavior, as you do with your non-ataxic children
      • Take the same reasonable risks with them that you would with your non-ataxic children
      • If they need your help ask for permission, give them more control over their environment. "May I" isntead of "Let me" or "I'll do it"
      • Train them to be always mentally independent and self-advocators
      • Advocate for them

FINANCIAL/BENEFITS SUPPORT - You must go find it! And advocate for it!

  • Federal
  • State
    • Google search for "National listing of state resources".
    • Board of Rehabilitation
    • ILC's (Independent Living Centers) for information and consultation: Web search "Your state" + "independent Living Council" then find the listing of centers.
  • County
    • County Child Services
    • In-Home Support Services
    • United Way agencies
  • Local
    • Fraternal organizations

WHAT CAN I DO?? - Learn and participate!

  • Get a computer and get online. Can't afford a computer? Try these:
  • Fundraise for you cure! We are all close; now it just takes money!
  • Help others
    • Support groups
    • Network
    • As you gain knowledge, share it!
  • Advocate for your child
    • In a positive firm way demand ADA compliance
    • Model good ways to handle people's "attention"
    • Be assertive and forge partnerships with doctors
    • ADA advocacy google search

THEN YOUR ATAXIAN

HEALTH

  • Emotional Health
    • Grief process
      • Denial for a time is not bad. It is part of the grieving process. And since ataxians lose a little function at a time they will go through the grieving process in small cycles many times, including periods of denial.
      • Give them a balance of slack and expectation in their acting out. Again, they will be looping through the grief process more than anyone else, even if it doesn’t look like it. But don't let it become a crutch.
    • Support for them
  • Physical Health
    • Exercise - If you don't use it you will lose it
      • Moderate body toning and flexibility exercises emphasizing repetition to re-teach movement coordination
      • Adaptive manual or motorized leg exerciser
    • Diet

"NORMAL" LIFE

 

MEDICAL AFTER 18

  • The ataxian can directly apply for SSI; MediCal or equivalent also. See above on SSI.
  • Parental access to medical records is the same as any other 18 year old. Forms exist for your 18+ ataxian to give you permission to see his medical information. In California it is called an "Advance Health Care Directive."

ATAXIA COMMUNICATION

  • Handling strangers
    • Some strangers in public places can unintentionally be pretty offensive and intrusive. Prepare your ataxian with a standard response or two to inquiries of why are they walking differently.
  • Confusion with drunk or drugs
    • Some ataxians carry a card reading: "ATAXIA is a neurological disorder. It may affect the ability to walk, use the hands, or speak clearly, but does not affect intelligence or mental processes." Or design your own!
    • Prepare your ataxian to handle school officials or police that have questions: http://www.faparents.org/fapg/LivingWithFA/Drunk

Please remember to Email pkonanz@comcast.net with any
suggestions for information additions or to report gaps in topics.


Addendum I

COPING WITH LOSS (excerpt) - 5 STAGES OF GRIEVING

Funded by FEMA through the Minnesota Department of Human Services--Mental Health Division, in cooperation with CLIMB Theatre and the University of Minnesota Extension Service.

…. 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.



Addendum II

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.

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


Addendum III

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.



Addendum IV

FA-SPECIFIC AREAS

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      Vitamin E

Ø      NAC

 

v     Recent Medical research

Ø      www.curefa.org/pipeline


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