@frankie-perazzola
-
Christina Cordaro replied to the topic Happy 2021! in the forum Living with FA 1 year, 5 months ago
@frankie-perazzola Happy New Year! This is one of my goals as well 🙂
-
Christina Cordaro replied to the topic Check In in the forum Coronavirus (COVID-19) and FA 1 year, 8 months ago
Hi @isabelle-desmarais! Kindly click the link below to learn about the policies and regulations for the forums:
Let myself or @frankie-perazzola know of you have any additional questions! We are the moderators for this forum.
-
Christina Cordaro replied to the topic Stability using a Walker in the forum Assistive Device Usage 1 year, 11 months ago
@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.
-
Christina Cordaro started the topic FA Member Spotlight in the forum Living with FA 1 year, 11 months ago
Hello! We are looking to launch a new series/sub-forums here at Friedreich’s Ataxia News Forums called Member Spotlight!
This forum is for members to share their stories, and discuss FA topics that they’re passionate about. Each month, we would like to feature two members here. If you’re interested in participating, please let @frankie-perazzola o…[Read more]
-
Christina Cordaro replied to the topic CBD Gummies in the forum Nutrition, Supplements, and Exercise 1 year, 12 months ago
@frankie-perazzola I took it for the first time last night and I slept a full 7 hours, which is alot for me!
-
Christina Cordaro replied to the topic Relationships with loved ones during lock down in the forum Coronavirus (COVID-19) and FA 2 years ago
@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.
-
Christina Cordaro replied to the topic Food Shopping in the forum Coronavirus (COVID-19) and FA 2 years ago
@frankie-perazzola I agree! Sometimes, I don’t think it’s fair.
-
Christina Cordaro started the topic Welcome Back! in the forum About Our Forum 2 years ago
Hi everyone and welcome back! After a few months of taking a break, the Friedreich’s Ataxia Forums is back and in full swing. Frankie Perazzola (@frankie-perazzola) and I will be sharing moderating responsibilities on the forums. Frankie resides in California and I live in Pennsylvania. We both live with FA.
I was diagnosed with FA nine years…[Read more]
-
Christina Cordaro replied to the topic How often do you see your neurologist? in the forum Living with FA 2 years, 5 months ago
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?
-
Christina Cordaro replied to the topic Daily Accomplishments in the forum Living with FA 2 years, 5 months ago
@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!
-
Christina Cordaro replied to the topic Happy 2020! How did you ring in the New Year? in the forum Living with FA 2 years, 5 months ago
@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!
-
Christina Cordaro replied to the topic Adjusting to Hotel Beds in the forum Living with FA 2 years, 8 months ago
@frankie-perazzola wine always does the trick or CBD gummies lol
-
Christina Cordaro replied to the topic Compression socks in the forum Living with FA 2 years, 8 months ago
@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.
-
Christina Cordaro replied to the topic Attending an FA event in the forum Living with FA 2 years, 8 months ago
@frankie-perazzola I’m so glad we officially got to meet in person today!
-
Christina Cordaro replied to the topic Back to school routine in the forum Living with FA 2 years, 8 months ago
@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!
-
Christina Cordaro replied to the topic Dealing with your partners “flaws” in the forum Relationships & FA 2 years, 8 months ago
@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.
-
Matt Lafleur replied to the topic Netflix and chill (while being productive) in the forum Living with FA 2 years, 11 months ago
@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.
-
Matt Lafleur posted a new activity comment 3 years ago
Hey Rachael,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of ou…[Read more] -
Matt Lafleur posted a new activity comment 3 years ago
Hey Heather,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of ou…[Read more]-
Thanks for letting me join! I have been diagnosed with FA since 2013 when I was 49, symptoms started in my 40’s so very late on-set compared to most. I am still able to walk with the use of a rollator but things are getting more difficult and taking longer to do. I have taken part in a small trial of the drug G-CSF to see if it will have any…
-
Wow, I’ve never heard of that drug. Please keep us updated!
-
Will do. If you look on the FARA research pipeline chart it is right at the bottom under stem cell therapy. I see Dr. Wilkins as an outpatient too so get to know what is happening. FARA along with Ataxia UK provided funding for the small study, but if it is to go further then a bigger budget will be needed so may take a while.
-
-
-
-
Matt Lafleur posted a new activity comment 3 years ago
HeyTania,
Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our c…[Read more]-
Thanks Matt,
Thank you for having me. My 17 yo daughter has just been diagnosed with FA so we are new to all this. I’m not the type of person who sits back though so I have plans to get the FA word out as much as I can in our community and raise funds for research etc.Thank you for creating this space it has been so helpful for us to get some i…
-
Welcome Tania. It is awesome to hear you have a feisty spirit- your daughter needs that! Please let her know that if she joins the forums herself, or if she or you want, I can get her in touch with some FAers her age from all over the world!
-
Also Tania, sorry for missing this, but I didn’t make this forum! The company BioNews did and I am the lucky guy they let be one of the moderators!
-
-
- Load More
Love this!