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 ( 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 with your large or small nuggets of rich knowledge.




Paul Konanz




Table of Contents








GAINING KNOWLEDGE                                                                                        


Prognosis, progression and symptoms                                    


Medical Research                                                                                             






ATAXIA COMMUNICATION                                                                                 


Modifying your home                                                                        


PLANNING AHEAD                                                                                                 


FINANCIAL/BENEFITS SUPPORT                                                                         


What can I do??                                                                                      






Take care of yourself as Caregiver                                                      




I           Coping with Loss (excerpt) - 5 Stages of Grieving                                              

II          Working Through the Stages of Grief                                                   

III        Sure Steps to Caregiver Burnout                                                                      

IV        FA Specific Areas                                                                                           

V         Other “Recently Diagnosed” Guides                                                                 




v     HEALTH

Ø      Personal Emotional Health

¨      The grieving process

·        Understand the grieving process (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

·        Pastor/priest

·        Support groups 

¨      Ataxia Chat 2002:

¨      INTERNAF Email

¨      NAF bulletin board:

¨      MDA

¨      Start your own! (Through Yahoo Groups for instance)

·        Family/Friends

¨      Read some books or articles on “loss”

·         A bookstore or library has many

·        .



Ø      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

·        Junior college adaptive classes: water, body toning, flexibility, etc

¨      Diet

·        Eat a good balanced diet

·        Look for information specific to your ataxia on supplements


Ø      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

¨      Sexuality: web search, many hits -



v     CAREGIVERS –You can’t do without them so take care of them!

Ø      See “Caregiver


Ø      Learn to train, motivate, supervise and manage your caregiver

¨      Susik spells out the how-to's of selecting, evaluating, and supervising caregivers. Hiring Home Caregivers : The Family Guide to In-Home Eldercare , D. Helen Susik, Impact Christian Books; Paperback - 205 pages (May 1995), ISBN:0915166917

¨      Do not let them hurt you. Make transfers deliberately and slowly.

¨      You are the boss! Unless you give that position away.


v     GAINING KNOWLEDGE Ignorance is not bliss!

Ø      Great websites

¨      FAPG (FA Parents Group):

¨      FARA (FA Research Alliance):

¨      NAF (National Ataxia Foundation):; including the Generations’ archive. (Join their E-NAF Chat room)

¨      MDA (Muscular Dystrophy Assoc.):; including the Quest’ archive.

¨      INTERNAF (International Network of Ataxia Friends): (Join their Email support group)

¨      ILC’s (Independent Living Centers)

¨      Ask your NAF support groups for websites.

¨      NAF bulletin board:


Ø      Adaptive Equipment

¨      Web searches

¨      Attend an Abilities Expo

¨      See your local durable goods medical equipment providers


Ø      Great magazines and books

¨      MDA’s Quest:

¨      NAF’s Generations:

¨      Almost every support website has a recommended reading section.


v     Prognosis, progression and symptoms (For FA see Addendum IV)

Ø      Get to the right doctor, one that has treated ataxia

¨      Ask NAF or the NAF support group in your area

¨      Ask on the INTERNAF Email

¨      Go to a MDA clinic

¨      Ask the doctors at this conference for their physician recommendation



Ø      Network! Ask questions


Ø      Get on the web (be careful of old, outdated information in the last four below)

¨      For FA:

·        FARA:

·        FAPG:


¨      National Organization of Rare Disorders (NORD)



¨      University of WA -


v     Medical Research

Ø      For FA, see FARA, MDA, FAPG, and Addendum IV


Ø      For other ataxias

¨      INTERNAF:

¨      NAF support groups,


v     Supplements

Ø      For FA see Addendum IV and


Ø      For other ataxias

¨      INTERNAF: and discuss on INTERNAF Emails

¨      NAF support groups,


v     Schooling

¨      FAPG:  and

¨      Section 504:

¨      MDA: , click Search, put in “college”, 10 pages of articles!

¨      Browse NAF’s Generations:

¨      INTERNAF’s Email for discussion with those who are in college or have gone through college as a disabled person:


v     Ataxia communication

Ø      Handling strangers

¨      Some strangers in public places can unintentionally be pretty offensive and intrusive. Prepare a standard response or two (written or verbal) to inquiries about your ataxia.


Ø      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. Design your own!

¨      Prepare yourself to handle school officials or police that have questions:


v     Modifying your home

Ø      ADA Accessibility Guidelines for Buildings and Facilities (ADAAG):


Ø      Kitchen plans:


Ø      66-page paperback published by the Paralyzed Veterans of America called:  The Accessible Home Design - Architectural Solutions for the Wheelchair Users; Thomas D. Davies, Jr., AIA; Kim A. Beasley, AIA; Copyright 1999; ISBN 0-929819-10-1


Ø      Web search, 1M hits,


Ø      Discussion on Email lists.


v     “Normal” life

Ø      “Normal” is a physical and psychological myth. Ataxians make life as “normal” or abnormal as anyone else

Ø      Go for it!

¨      Sports




·        “Disabled Sports” search; 700,000 hits.

¨      Travel

·        Google:

·        “Disabled Travel” search; 1M hits!


v     PLANNING AHEAD – Don’t back into the future!

Ø      Don’t wait until you are about to be in crisis to find out about services, caregivers, etc.


Ø      First time experiences

¨      Until the Treatment arrives your ataxia will progress. Identify every physical experience you want to have and then set about to make sure it happens.


Ø      As walking becomes more difficult

¨      Become knowledgeable of the pro/con’s of canes, walkers, scooter, etc.

¨      Improve accessibility

·        Horizontal handrails in your home’s hallways?

·        Remove loose throw rugs

·        Bathroom grab bars

·        Insure frequently used public facilities are accessible and safe. See Schooling above


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

Ø      Federal

¨      SSI/SSDI



·        Social Security:

·        Get help to avoid bureaucracy snafu’s.

¨      ILC’s:


Ø      State

¨      National listing of state resources. Wow! What a website!

¨      California GHPP (Genetically Handicapped Persons’ Program):

¨      Board of Rehabilitation

¨      ILC’s (independent living centers) for information and consultation:


Ø      County

¨      County Child Services

¨      In-Home Support Services

¨      United Way agencies


Ø      Local

¨      Fraternal organizations – don’t be bashful, ask!


v     What can I do?? - Learn and participate!

Ø      Get a computer and get online. Can’t afford a computer? Try these:





Ø      If you can, fund raise for your cure. We are all close; now it just takes money!

¨      Web search “fundraising ideas” got 317,000 hits.



Ø      Help others

¨      Support groups

¨      Network

¨      As you gain knowledge, share it!


Ø      Advocate for yourself and others!

¨      In a positive firm way demand ADA compliance.

¨      Model good ways to handle people’s “attention”






¨      Web search “ADA advocacy”






v     Health – Caregiver: you are the most important person! You must come first. Why? Because if you are not there for the ataxian, they lose.

Ø      Emotional Health 

¨      Grief process

·        You too will be in the grief process; even if you are an independent paid caregiver. See “Grief Process” above

·        The ataxian will be looping through the grief process more than anyone else, even if it doesn’t look like it.  Balance slack and expectations


Ø      Physical Health – If you get sick or hurt because you didn’t take care of yourself the ataxian loses!

¨      Eat properly, sleep and exercise

¨      Learn how to correctly help move someone

¨      See “Caregiver” below


v     Take care of yourself as Caregiver

Ø      Remember “Sure Steps to Caregiver Burnout”, Addendum III

Ø      Very good reference:

Ø      Links: click on “Caregiver”


Ø      Web search “Caregiver burnout”

Ø      Web search “Caregiver training”

Ø      State/county/local caregiver training

Ø      Several good FAPG “parent” references:




Addendum I



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.

    (Excellent article:

…. 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



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




Addendum V




v     Emotional effects:

v     Medical advocacy:, under Medicare advocacy

v     ALS Survival Guide: