Do you ever experience times when being social in any form is out of the question? When engaging in online or in-person conversation is draining, or when the thought of going out just seems unimaginable? It’s not necessarily depression, because it’s not as heavy, but you…
Over the past couple of weeks, I’ve had some good conversations with FAers and others about life. I was asked similar questions in each conversation, so I figured those topics must cross other people’s minds. Perhaps my answers can give you insight into my personality and who I…
It’s funny how cliches about life have started to make sense to me. From my observations of other rare disease communities, I’ve learned that when we reach a certain level of acceptance about our disease we gain a different understanding of life. When expressing myself, I try to…
Over the past few years, I have learned that Friedreich’s ataxia (FA) patients come to terms with their diagnoses in their own time. At first, I didn’t understand why some patients kept a distance from the FA community and the Friedreich’s Ataxia Research Alliance (FARA). I couldn’t…
Dearest Mom, I wrote this a long time ago, but I wanted to wait for a random day to show my appreciation. Not your birthday, not Mother’s Day — “just because.” At first, I couldn’t write a word without crying, but eventually everything spilled out so naturally. First…
It wasn’t until a fire alarm at my hotel this past weekend that I realized the complete disregard for people with special needs in emergency preparation. I hadn’t been in an evacuation situation since before my diagnosis, so this was an eye-opening experience. The alarm went off at…
I often have conversations with others about the mindset and positive outlook I attained while dealing with this illness. Although I realize this may be temporary and my attitude might change — as it has before — I’ve truly recognized that there are low phases that I…
Birthdays used to be so fun for me. Now, though, they are just reminders that this disease is taking over my physicality slowly. While I have a positive attitude most of the time, I can’t help but think of my progression on each birthday since my diagnosis…
Last month was Mental Health Awareness Month, so I thought this might be a good time to discuss this issue head-on. Some days can be harder — way harder — than others. Every single person on earth has problems and horrible situations they deal with throughout their…
It’s been tough lately. Just when I thought there was a light at the end of my depression tunnel, it got dark again, and I found myself having to start over. Many things attributed to my downward spiral, including the end of a relationship, being responsible for breaking…
Following my Friedreich’s ataxia diagnosis in June 2015, one of the first things the doctors told me was that I would progressively lose my ability to live independently and that I would need assistance in almost every aspect of life. The diagnosis alone was already a lot to…
Part of the advocacy realm that I truly enjoy is the opportunity to travel to new places and speak to different groups of people. At the beginning of March, I had two speaking engagements in Baltimore, Maryland. The flight from Los Angeles was five and a half hours…
Friedreich’s ataxia is physically challenging, but the mental aspect is often extremely debilitating as well. People are either afraid or unwilling to discuss their true emotions while dealing with such a serious illness. No matter how much you want to keep to yourself, you must know that whatever…
If you are a Friedreich’s ataxia patient, it’s likely that you’ve felt like a burden on your loved ones at one time or another. Sometimes you even feel bad about hanging out with your friends because you know how much work it will be for them or how much help…
The last week of February was extremely busy here in Southern California for the FA and rare disease community. On Feb. 23, the Friedreich’s Ataxia Research Alliance/University of California, Los Angeles (FARA/UCLA) FA Patient Symposium was extremely informative. FA specialists, FARA, and pharmaceutical companies all gave presentations…
On February 26, 2018, the movie The Ataxian was finally released to the public. If you’re not familiar with the film, it features Kyle Bryant and Sean Baumstark, two FA patients along with two of their lifelong friends as they complete the Race Across America (RAAM) — also known as…
Until I recently had a discussion with a friend, I hadn’t realized how important the city of Los Angeles was for my outlook on having Friedreich’s ataxia. I realize now how extremely lucky I am to live in such a magnificent place with beautiful scenery, amazing weather, and…
Meet John Cernosek from Maryland! John lives in Silver Spring with his beautiful girlfriend, who also happens to have FA. He’s 34 years old and was diagnosed with Friedreich’s Ataxia at the age of 19. His responses to these questions were eye-opening and we enjoyed reading his perspective…
Its been a while since I have written for my column, and I apologize for the inconsistency to those of you who pay attention to “Fighting FA.” I had to take a break from writing for such a public audience because, to be honest, I just needed some…
The Friedreich’s Ataxia Patient Spotlight is another method of raising awareness for Friedreich’s Ataxia. With an understanding of a rare disease and how crucial it is to get the word out, we are excited to share people’s stories and perspectives from all over the world. This week, coming to you…
Since there are 15,000 people who share the same genetic mutation, also known as Friedreich’s Ataxia, it’s important to share each other’s stories and perspectives. The FA community is bigger and closer than most people think — patients are diagnosed at different ages, stages and various locations all over the…
Let’s just put it all out on the table: depression and anxiety come with having Friedreich’s Ataxia. The sadness, frustration and angst that you feel is legitimate and is shared with every other FA patient. The mental health aspect can be just as debilitating as all the other major health complications…
After being diagnosed with a neuromuscular disorder with no set treatment plan and no cure, optimism and proactiveness may seem like a stretch. You may feel like there’s nothing you can do to help your situation or change your fate. However, there are things you can physically do to possibly…
Happy New Year to all of you! I hope 2018 has been treating you well so far and that you’re working toward your new set of goals (or existing ones). One of my goals every year, much like many of my peers, is to raise awareness for…
In today’s world, it’s become a trend to share every detail of your life — people always want to hear your story. No matter who you are, people are more curious than ever and like to engage in more meaningful conversations. Maybe it has to do with the popularity and…
January is the perfect time for new goals, new hobbies and a fresh start. The whole “new year, new me” phenomenon is in full effect with motivation at an all-time high. It always seems like people are more focused than ever at this time of year! But why does that…
It’s that time of year again. It’s time to gather with your friends and family for the holidays and wait for the flow of uncomfortable questions to start. It seems as though nobody listens or pays attention to the seriousness of Friedreich’s ataxia and having to repeat the same thing…
With the year coming to an end and Christmas coming faster than ever, I’ve become more reflective on what memories 2017 holds. Every year, I find myself saying, “Wow, I never thought I’d be here.” And yet, here I am again, repeating that tradition. 2017 was filled with…
Friedreich’s ataxia has numerous levels of frustration that can sometimes be maddening. The fact you have to depend on someone else to live your life definitely causes tension and can be debilitating in itself. You never feel refreshed after a decent night’s sleep, which affects the amount of effort you…
If you are a Friedreich’s ataxia patient, it’s likely that you’ve felt like a burden on your loved ones at one time or another. Sometimes you even feel bad about hanging out with your friends because you know how much work it will be for them or how much help…
As an FA patient, it can be difficult to effectively communicate your exact needs, hesitations or fears to those whose help you need the most. It can seem nearly impossible to tell family, friends, doctors, caregivers and others what you want. No matter how much your speech is or isn’t affected,…
As if public restrooms aren’t already a headache for the average person, being able to use only the handicap stalls is one of the most frustrating processes I and other wheelchair users face. I have been on both sides of the spectrum as far as being able…
I have learned that living with FA means constant heartbreak and adaptation. For example, I have had to go from using a cane to a walker in the span of two years. I went through the entire process of accepting that I needed a cane, getting the…
When it comes to getting out of bed or starting your day, it can be difficult to do just that. It’s much easier to stay in your pajamas all day than to go through the process of getting ready and going out in public. It’s a whole different process for…
No matter the circumstance, it makes sense to maintain relationships with those who are in the same, or in a similar, situation as you are. You can tell someone until you are blue in the face about your symptoms and try to explain exactly how FA makes you feel, but…
The ultimate test of any type of relationship in my life began the day I was diagnosed with FA. Friendships, family ties, and intimate relationships were all put through the ringer once I knew I was facing a life-shortening illness. Everyone copes differently with bad news, and miscommunication…
You know that feeling when you’re at a store and the cashier gives your change back and a couple of people are behind you? It seems like you can’t put away your change fast enough. Imagine that feeling for hours. That is like the anxiety I feel when…
You can ask my entire family — they’ll tell you I was fully willing to participate in clinical trials from day one. I’m assuming it was a combination of the previous minimal research I had done before my diagnosis, being an adult (or being older because, let’s face it, 22 is…
It’s not something a Red Bull or cup of coffee can fix. Pre-workout only goes so far. No matter what I do, it’s completely exhausting. After doing a load of laundry, I need to sit down and recover. And I mean, sit down for about 20 minutes to…
If you look at the walls in my house, they are riddled with fingerprints. When I am asked about my stage of progression and my mobility, I say that I am a tapper. I navigate through my house by tapping on the walls and furniture…
Until recently, I genuinely thought I had a grasp on my life-shorting diagnosis. I lost that grip the moment I heard a fellow FARA Ambassador had suddenly passed away. Paige Myers was the most loving, sweetest, smartest person with a heart of pure gold. By no…
“Why can’t you help bring in the groceries?” “Are you that lazy?” “Are you that drunk, already?” “Why are you so tired all the time?” “Why do you always stay in your room?” I couldn’t bare not having the answers to these questions and…
As a kid, I shared similar career aspirations as my friends ― astronaut, marine biologist and lawyer were my top three. With high hopes and a head stuck in the clouds to match, I was going to space to save Earth from a meteor, help all the endangered…
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