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FARAFARA Cure FA

Patient Perspective: Leah's Experience Participating in a Research Study

LeahAlstin1It was 2001. I had just finished year 12 and applied to do Primary School teaching at Deakin University. Life was exciting! I was moving to Geelong, not far off turning 18, getting my licence…all those fun things that happen when you finish secondary school. During year 12 I had felt a little unsteady on my feet and luckily I had a thorough doctor.

Mum received the phone call with my diagnosis of Friedreich’s Ataxia (FA) from a neurologist in Melbourne. She told me, I cried a bit, and then got on with life. I received a place at uni, I moved out of home, I got my licence, I partied hard. FA wasn’t that bad.

I attended the FA clinic at Monash Medical Centre annually until I was about 22 and then emotionally, I couldn’t do it. I would sit in the waiting room and compare myself to others, analyse every question that doctors would ask me, and then go home and cry on and off for weeks. A few times I was asked to participate in clinical trials, but I said no. I didn’t want any more to do with FA than I had to. Selfish I know, but I thought that maybe if I blocked it out, it might go away. 

11 years on…I am 33, married, have 2 children, and am attending the FA clinic at Monash again and participating in any clinical trial that I can. I use a walking frame nearly all the time. I can’t block FA out anymore (as much as I would like to)! It’s got me good, so I’m trying to work with it…roll with the punches.

LeahAlstin2My husband and children are the heart and soul of my life. They are my everything. We need to find a treatment or cure for FA. Yes, for me and others with FA. But more for them. My children deserve to have a mum who can hug them whenever they need, and tell them they are loved.

When I am asked to participate in a clinical trial, the first thing I think about is how it is going to impact my family. I write a list of pro’s and con’s.

In 2015, I was asked to participate in a physical rehabilitation trial. My gorgeous physio from Melbourne, Sarah Milne, was conducting it. She wanted to know if intense physical rehab as in outpatient would increase the physical ability of people with FA. I was so excited because I love to exercise, however, I then found out the time commitment. It would be 3 days per week, 3 hours a day for 6 weeks. The rehabilitation facility was also 2 hours drive from home. The pro’s and con’s list started!

LeahAlstin3My little girl was in Prep at the time. I felt bad that it would interrupt her schooling. Not having me there for drop off and pick up 3 days out of 5. My little boy was at 3 year old kinder and suffered severe separation anxiety. I was so worried that me being away would unsettle him more. This is where my network of beautiful friends and family came to the rescue. I had a friend offer to take care of the kids when Joel (my husband) was working. The kids both knew her extremely well so I knew this would work. I had friends offer to drive me as they knew that I would be exhausted. And what if I noticed positive results?! I had to do it!

Each day consisted of ½ an hour of Physiotherapy, ½ an hour of gym work, 1 hour of hydrotherapy and a lunch break. Some of the Physio included intense massaging of my feet and calves (ouch!), learning how to shift my weight correctly when walking & correct posture. The gym work consisted of weights, work on a pilates reformer, sit to stands etc…with a big focus on control. In the pool, there was a lot of focus on walking (correctly!). Weight shifting, control and foot placement. There was also some focus on rotation. Getting my body to move in ways that it doesn’t do a lot anymore.

At the end of each day, I was exhausted. By the end of the week, I could barely see out of my eyes. But I had a constant feeling of achievement. I felt like I was doing my bit. It sounds a bit silly, but now I have a desire to participate in as many clinical trials as I can. Since this trial in 2015, I have participated in 3 more. A treatment or cure for FA will be found. I just know it. I am going to do all that I can to achieve this. My dream is to dance with my son on his wedding day, and I will.

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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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