Welcome Members

Welcome to Living with Ataxia Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

The word “ataxia”, comes from the Greek word, ” a taxis” meaning “without order or incoordination”. The word ataxia means without coordination. People with ataxia have problems with coordination because parts of the nervous system that control movement and balance are affected. Ataxia may affect the fingers, hands, arms, legs, body, speech, and eye movements. Ataxia is often used to describe a symptom of incoordination which can be associated with infections, injuries, other diseases, or degenerative changes in the central nervous system.

This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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How is Ben’s Friends Different from Social Media and Other Support Sites?


Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together..

Ben’s Friends: Safe and Supportive. 
And anonymous to keep it that way.

Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join. 


Latest Discussion

  • Problems experienced associated with Cerebellar Ataxia
    by Beryl_Park on September 26, 2023

    A diagnosis of Cerebellar Ataxia means most natural functions are damaged. The cerebellum is a part of the brain that plays a vital role in most physical movement, including eye movements. Problems with the cerebellum can lead to co-ordination difficulties, fatigue, and other challenges. This part of the brain helps a person drive, throw a ball, […]

  • coQ10 supplements
    by Yakamoz84 on September 18, 2023

    Is anybody taking coQ10 supplements? Any effects? 3 posts - 3 participants Read full topic

  • Lifestyle change
    by Yakamoz84 on September 17, 2023

    I really believe myelin decrease is very important in developing Ataxia. Eating nuts (walnuts, hazelnuts) and vitamine D help your myelin thus protecting your brain. It is not a silver bullet so it is no cure but every little bit helps. 2 posts - 2 participants Read full topic

  • Bob's current Ataxia condition
    by Chas521 on September 12, 2023

    For those of you that know of Bob and Brad [online Physical Therapists], Bob has Ataxia. This is his current condition: Update On Bob (Current) + Who Is Mike? 5 posts - 4 participants Read full topic

  • Remyelination
    by Yakamoz84 on August 24, 2023

    Interesting: Psychology Today Brain Regeneration Myelin repair is one of the most robust ways the brain can regenerate. Note: Remyelination is the regeneration of myelin after it had been degraded in some way. 3 posts - 3 participants Read full topic