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FARAFARA Cure FA

30 Years and still Fighting

Jean50, FA, still going strong.

I am fifty. I have been diagnosed with FA for about 30 years. I was diagnosed in the dark ages of FA. No FARA, no pipeline, no people riding their bikes across the country to raise awareness and money to fight FA. People ask me what I’ve done to keep myself as healthy and happy as I can. Some of what I consider to important follow. There is one big huge caveat: everyone’s FA is different. I always say I am not lucky to have FA, but I am lucky in how I have it (no heart involvement and no diabetes so far). So, in no way am I suggesting my recipe is what will work for you or your loved one. But maybe something will work for you or your loved one?

Jean (left) and her sisters, Lisa and Trish. 1972So this is my little list:

  • Find your own balance between pushing yourself and staying safe. It means different things to different people, so remember your loved ones can’t figure it out for, you have to! My example: At FA Woodstock 2012, I met a new friend with FA. She stayed in the hotel alone (she has a power chair). To me that sounded like a huge risk. She did great and it all worked for her. She thought I was so brave to do the twelve mile ride in the Chicago Ride Ataxia. I did it. It wasn’t pretty, but I’d do it again. Two people, two different risks, each good. Jean (left) and her sisters, Lisa and Trish. 1972.
  •  

    This is, I think, one big optimistic note. The treatment for FA is not thirty years away. People who have been diagnosed after me will not have to live with it so long with FA. There is FARA. There is a pipeline. There is Kyle and lots of us working for no FA.

    Please share your ideas about how you manage to stay happy and healthy with FA in your comments to this blog. We’d all love some new tips!

    Jean

    • Exercise! Do as much as you can without getting hurt. (Think of the recovery time that’ll take you away from being as healthy as you can if you get hurt.) I think our doctors have all told us about the physical benefits, but exercise is a boon for your mental health too. (Check out Spark by John Ratey http://www.amazon.com/Spark-Revolutionary-Science-Exercise-Brain/dp/0316113514 for more.) Find what you love, do it and stay as fit as you can for it. I’ve stayed fit to varying degrees throughout my life.
    • Do things you like. For me, if I have too much free time I can get obsessively thinking about FA and how wrong it is that I or anyone has it. This worrying & obsessing is very unhealthy and does nothing to stop FA. Right now I am studying for my second Masters. I enjoy school. When there is a cure for FA, I’ll be so ready to hit the road running career-wise.Jean with her pony. 1973 Jean with her pony. 1973.
    • Do whatever you can to help FARA end FA. Not only is it empowering (you aren’t just waiting for our brilliant scientific community to find a cure, you’re helping to make it happen), but people with FA and/or their loved ones are so much more powerful and persuasive than non-FAmily in helping others understand how important their help is. Again what works for you here might be writing FARA a check, joining a Ride Ataxia, hosting fundraiser, and more. Do whatever works for you!! I host an annual day for FAmily to connect as well as a FARA fundraiser. I also try to go to all the fundraisers I can.
    • Do your best to stay optimistic. I don’t mean that you should always be that hopeful. FA is rotten and to not let yourself have bad days isn’t healthy either. Sometimes I can be hard on myself here! I have to work on letting myself have a pity-party now and then. The party is OK for a day or so and helps me mourn the many losses of FA. For me, a longer pity-party isn’t healthy.Jean and husband, Dave. 1992. 10 years after FA diagnosis. Jean and husband, Dave. 1992. 10 years after FA diagnosis.
    • Do your best to focus on your FA and not everyone else’s. It is so different for everyone and the differences have more to do with luck than anything else. (Of course science explains many of these differences; I mean the randomness of the repeat lengths you inherit.) This is the best way I have found to manage my health. I need to focus on what is happening for me and not let what is happening for others predict what will happen for me or be jealous that others seem to be healthier.

    About the Author

    The FARA Ambassador Program

    The FARA Ambassador Program

    The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
     
    Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
     
    The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

     

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