Activity

It is nice that this year the holiday falls on the weekend. Hopefully some of you have the opportunity to makea nice long weekend out of it!

What do you look forward to most when you have time off? For me, its relaxing and spend time with family and friends.

Just a reminder, there will be no moderating forums tomorrow, but business will resume…[Read more]

One of the biggest things that I struggled with recently was my relationship with food. Over the past six months, I’ve lost 20 pounds because I really talk to myself how and what to eat. I was eating a lot of takeaways and food from restaurants. Even though it was easier To access and receive already made meals, I also realized how much weight I w…[Read more]

I order my CBD gummies through a company called Soothe. I take one at nighttime and it truly helps me relax and sleep throughout the night. The company just came out with a new product- elderberry gummies to have the same effects and also help fight your immune system.

Has any of you tried different CBD products? What works best for you?

Over the years I have been going through my fair share of supplement companies. I have tried different kinds of protein powders to branch chain amino acids or BCAAs, pre-workouts and everything else.

The best company I have found to meet all of my supplemental needs has been Bloom nutrition. I have been taking their supplements for over a year…[Read more]

Most of have heard of pharmaceutical companies researching and testing gene therapy for a potential treatment for FA.

There is now a study called the CRISPR-Cas9 gene editing technique. It safely removed the gene expansion that results to frataxin levels and mitochondria in cells that are taken away from patients.

Do you think that gene…[Read more]

During the lockdown, I know a lot of people have had to go back home or resume school online.

What does it look like for you? Will you be doing hybrid schooling where you would attend in person a couple days a week and the rest online? Or will you continue doing all virtual classes?

I’m sure lotta people here are facing the same thing and w…[Read more]

Does anyone have any tattoos that have a special meaning and represent FA to you? For me, I have two. I have a blackbird for the Beatles song, Blackbird and its lyrics, “take these broken wings and learn to fly”. I also have lyrics from my favorite artist, Blue October, “gonna wake up strong”. Both quotes remind me everyday of the strength and…[Read more]

Recently, I’ve noticed with my walking that I lean side to side more often. Meaning, whenever I’m walking in a straight line my way shifts from side to side causing me to lose control of my walker.

Some thing I have found that is very helpful is adding weight inside my walker to help me with balance. Not only does it help me stay grounded but it…[Read more]

Click here to read about Frankie Perrazzola’s quest for self-improvement and goal achievement in the midst of the chaos of a global pandemic.

What are some goals you’re currently working toward? Has the pandemic made you more or less motivated to achieve them?

Lately, I’ve been finding myself become easily forgetful of things because my mind is always running a hundred miles a minute. I am multitasking and thinking of my diagnosis, the future all while concentrating on my walking if I am out. Today at the grocery store, I forgot a few items even though I made a shopping list.

Does anyone else feel they…[Read more]

The other day, I got food poisoning so bad that I legitimately thought I was going to die. I’ve never been in so much pain or experienced hot flashes and throwing up like that.

I’m just getting my strength back but my body has been extremely frail and weak after treating some of my symptoms for food poisoning. The only thing that worked for me…[Read more]