Frankie Perazzola

@frankie-perazzola Happy New Year! This is one of my goals as well 🙂

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@frankie-perazzola definitely because my legs are fatigued and tired. I feel like they “give out” and I just lose the strength to keep walking.

@frankie-perazzola I took it for the first time last night and I slept a full 7 hours, which is alot for me!

@frankie-perazzola it has definitely helped my husband understand more of my struggles with my FA progression and how things are getting more difficult to do things on my own.

@frankie-perazzola I agree! Sometimes, I don’t think it’s fair.

I go once year to CHOP in Philly to see Dr. Lynch. In addition, I see the cardiologist every other year.

I was told only once a year is fine. Do you think it should be more @frankie-perazzola? What do you go over at each visit?

@frankie-perazzola I like the idea of making a list. 8t all depends on my fatigue levels are for the day, so this will help keep me organized if I cant get everything done in one day!

@frankie-perazzola Happy New Year as well! Your tradition sounds like a fun and relaxing time too! Yes, I know it is hard but try not to worry about the future and be be in the present!

@frankie-perazzola wine always does the trick or CBD gummies lol

@frankie-perazzola I don’t wear compression socks. But do you think they will help with purple feet associated with FA? This happens to me, especially in the winter.

@frankie-perazzola I’m so glad we officially got to meet in person today!

@frankie-perazzola for work, I do all of the above- wake up earlier, lay out your clothes and shower the night before to give myself extra sleep time and time to make sure I am not rushing getting ready and eating breakfast. I feel as though this helps me!

@frankie-perazzola my husband also suffers a rare disease, called Fabry Disease. He thankfully has treatment and takes an oral medicine every other day. But between Fabry and Friedreich’s Ataxia, be both have become stronger for one another and understand each other better because we go through some of the same symptoms.

@frankie-perazzola, this is a great insight! I’ve thought about this a little, but never really put it together. My goal is to be in my standing frame while watching Netflix. Hopefully lengthening from an episode of The Office to House of Cards to a movie!

But yes, Netflix is tyically a time for being a bum. I hope to change that.