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FARAFARA Cure FA

Tom Trovinger

Hi, my name is Tom, I'm 38 years old, and I was diagnosed with FA in 1997. I live independently in my own house, which is very important to me. I strive to do whatever I can to maintain some level of independence for as long as possible. Living alone at times can be very difficult.Tom I find myself getting frustrated more easily because I routinely find different things that I either cannot do, or have more and more difficulty doing. It's almost as if I am continuously mourning the loss of different abilities. My constant struggle to maintain my independence can also be very difficult to friends and family members. I am very resistant to ask for, or accept, help. A lot of people around me get upset with me because they want to help, rather than watching me struggle with an otherwise easy task.

Staying active, to me, is a very important part of being able to stay independent. Staying active, doesn't necessarily have to involve exercise, but I think that is a huge part of it. I subscribe to the "If you don't use it you will lose it" rule, meaning if you have muscles that you don't use on a regular basis, they will gradually deteriorate, and eventually you won't have them to use. I work out at the gym four days a week, doing whatever I can. I also participate in physical therapy twice a week where I exercise my core muscles and walk, albeit for short distances. I also travel a lot, and participate in many social activities.

 

In 2011, I was a recipient of a trike from the Ataxian Athlete initiative. A trike is a very expensive piece of equipment, and I don't think I would have been able to purchase one on my own, but it has changed my life for the better. Tom & fellow FARA Ambassador, Jamie, at Ride Ataxia Philadelphia, 2011. Tom & fellow FARA Ambassador, Jamie, at Ride Ataxia Philadelphia, 2011. It allows me the opportunity to get outside, get some exercise, and use my legs. All of which I believe are instrumental in helping me stay active. In addition, it also gives me an awesome outlet to help raise funds for FARA by participating in Ride Ataxia Philadelphia. I don't know if anyone that is not in a wheelchair full time or most of the time would understand this, but the freedom I feel when I'm riding is like nothing else. It's hard to explain to people how amazing it feels to be going that fast under your own power, in something other than your wheelchair.

I also am going on my third rafting trip in Utah in the middle of August this year with an adaptive sports group called Splore. This was a huge step for me. Everyone who knows me personally always says that I have no business being on that trip. I don't like water, bugs, camping out, being Splore, August 2012. Splore, August 2012. dirty, bathing in the river, etc. I don't know exactly why, but this raftinng trip is just something I love, for a number of reasons. For that one week of the year, I feel absolutely free. I don't have to worry about the outside world, or any of my circumstances. On every one of the rafting trips I have taken with Splore, I experience the joy of being a part of a loving group of people with FA, volunteers, and guides, and breathtaking views. Splore makes sure you feel so much like you are part of the group and Splore values the unique contribution you bring to the outdoor experience. I also absolutely love telling people about the trip, especially people that are afraid to go rafting, and/or believe I should not put myself at risk. It is a joy to me to accomplish something which others say you cannot do. Splore refers to the experience they provide people with as "Dignity of Risk". This is a notion that I completely subscribe to. Historically, it was thought that to care for someone with disability meant sheltering them from the world. Risk-taking was feared and avoided. Splore, believes that there is dignity in risk-taking and that it is an inherent part of living a full and robust life. They are excellent at managing the risk of their adventures, so that every Splore participant feels empowered and dignified. It won't be long now, I can't wait for August 14th.

Tom & his awesome mom! Tom & his awesome mom!

Yes, FA has taught me a lot. I think that if I had it all to do over again, I don't know how much I change. FA has taken a lot from me, but it has also taught me a sense of urgency, to do what I do, and never stop fighting. It has made me who I am today. There have been days, like everyone has, that I don't feel like getting up. I have felt like not doing anything, just basically giving up and quitting. Then I always think to myself, Tom, you can't give up now, you have plenty of people to prove wrong today.

Tom

 

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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