My View On... -- By Stacey White

A question "What does Internaf do for me was put to the list of Internaf members. Here are the responses:

A member with late-onset SCA writes:

I was diagnosed with late-onset SCA a couple of years ago after 7 years of visiting numerous DRs with no answer. I live in a remote part of Australia and was virtually just left to get on with it. My neuro freely admits he doesn't know much about it, doesn't see the need to do genetic testing, and he is the best in the State!!! So I came home feeling very much alone. All he told me was that I'd probably end up in a wheelchair.

So, after a period of feeling rather flat, I got on the Web and found Internaf. I have enormous gratitude for the moderators and all the members. I have found out so much information about my condition - it has just been mind boggling. I came to realise that my health/treatment was mostly going to be in my hands - that I might have to go to my neuro and be more assertive and gently educate him. It might help someone else further down the track.

Internaf has been my lifeline over the last 18 months. If I've felt flat, I have been inspired by members who are further down the track than I am and often much younger. And because of you all, I've found that having a disability isn't the end of the road - that maybe it's an opportunity to go in another direction. Thank you Internaf, from the bottom of my heart.

A member with FA onset age 6 who is now 33 writes:

Internaf in reading helps me feel as if I am not alone. I finally have people to "talk" to who really understand my feelings about physical situations and mishaps and some people that actually share my feelings. I feel less estranged.

A member diagnosed with SCA6 in `969 and confirmed in 99 by genetic testing writes:

Every once in a while, I learn something. Sometimes it irritates me. Sometimes it depresses me. Sometimes it is uplifting. Every time I think about seriously "un-subscribing", I don't because I don't want to miss an important piece of information. But often one has to wade through lots of trash to find that elusive gem. Life is like that. I don't expect Internaf to be different.

A member with FA writes:

Internaf has made me feel part of a group. The people on Internaf are pretty much like "Normal" people everywhere, except most Ataxianss seem to have a bigger sense of humor. Maybe that is a coping skill.

A member with non-hereditary ataxia writes:

When I first joined the list 8 or 9 yrs ago, I was very happy that I found 'others like me' struggling with similar problems, and who REALLY understand. Then I went through a period when I still read every word, but didn't want to hear about all the problems people were having and considered leaving. I never did. Now I am happy there is such a group, read every message, but not necessarily every word. I reply to individuals more and more, though that has leveled off, but as I said, I can't get messages through to the gp. I can't say exactly why it so important to me, but it is very important to look at the messages every day.

A member diagnosed with FA writes:

Well, first off it has introduced me to some of the most amazing people I never would have met otherwise. I have made friends through Internaf that I will have the rest of my life. It has also educated me on Ataxia. Not only FA but the other types of Ataxia also.

I know I have never been alone with the Ataxia but sometimes it felt that way. I have so much guilt because of certain things and Internaf has helped me with that. I will always carry the guilt but now it doesn't consume me.

A member with FA writes:

What does internaf do for me? I think this question should be reworded to; what has the internaf contributors and email list members done for me? To answer the rephrased question, in a nutshell; A sense of family. A daily reminder that I am not alone with my struggles. A wide based knowledge of others having Ataxia. Ideas, others use, to make my life easier. A feeling of worth knowing I can and helpful to people in my situation.

A member diagnosed with FA in 1991 writes:

It gives a forum to ask others with same problems questions. Some members are older and some are younger, whatever the age the experiences are generally the same. I have no one to ask should this hurt or should I do this or I ask for ideas about pool lifts or transfer boards or etc. Internaf keeps me up to date on the medications I can take and their purposes. Basically it gives me support and answers my questions.

A member with SCA7 writes :

I rejoined Internaf because my condition has got worse and I was wanting to see if anyone knew anything that would improve my condition.

A member still unsure of her type of Ataxia writes:

I have an early onset form of Ataxia, whose symptoms point closest to Friedreich's Ataxia. I joined Internaf in 2001 after doing an Internet search on Ataxia. Before that my knowledge about this disorder was limited. I had refrained from looking up on Ataxia when I first got Internet access as I was afraid it would tell me only the worst parts, the same with medical books. But I eventually took the first step and came across the Internaf website. I wish I had joined the mailing list sooner. What I have learnt now could have been a useful tool to me years ago. I did not realise so many people have Ataxia. It was through Internaf that I learnt about Co-Q10 and subsequently started taking it. I learnt more about symptoms and how they are managed. Coping skills, support and personal experiences feature high on the list and have helped me a lot. Most importantly I realise I'm not the only one out there with Ataxia. Age of onset and symptoms may vary from person to person, but Ataxia has a way of bringing us together and I am very grateful that I now understand this disorder better.

A member with FA writes:

I was in a very dark place when I joined Internaf. I always knew technically that I was not alone. But boy at times this disease can isolate you in a crowded room of doctors, loved ones, friends, family or pets. Through Internaf I have learned that this doesn't have to be the "norm".

The extended family feelings, the support, the medical info to be able to help myself and of course the many friends I have made I will forever cherish. But for me the best part is contributing a post every now and then in an attempt to help others like me. Internaf allows me to feel useful again after my FA has robbed so much.

And if all else fails, there is always the occasional row to brighten everyones day. I am proud to be a member and a moderator and look forward to the future again. Internaf has played a huge role in that, I am forever in it's debt.

Views collected by

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Stacey White
auntystac@yahoo.com
Internaf Moderator
Internaf-News Moderator
Internaf Website
http://www.internaf.org

 From the Manager -- By Michel Beaudet

This is our first newsletter in quite awhile. It's only 3 pages, but we hope future editions will be bigger.

If you want to contribute to our newsletter with articles or by helping Marty, the editor, in any way, email him at mrburke@att.net

If you want to help Stacey with finding and posting newsworthy stuff (medical or practical) or questions about the chat, email her at auntystac@yahoo.com

If you want to help me with the website management (fluent with html) or find errors or would like to add things, email me at the address listed below.

Our website, http://www.internaf.org, contains alot of info, distributed under 8 sections plus the main page:
Main page: link to INTERNAF The Lighter Side, IAAD link, Disclaimer and explanation of 4 major sections;

Internaf-pro: For invited professionals in the field of ataxia;
Newsletters: To access this newsletter and older ones;
Photo-Album: Pict's of some of our members. You're welcome to add yours;
Chat sessions: Info on ours and a few others.

--
Michel Beaudet
Internaf - INTERnational Network of Ataxia Friends
michel.beaudet@videotron.ca
internaf-subscribe@yahoogroups.com
http://groups.yahoo.com/group/internaf
http://www.internaf.org