Matthew Lafleur
Forum Replies Created
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Hey! The FA Group on Facebook isn’t affiliated with Bionews but that is really weird. What is the name of the group? If I know any Admins, I will find out for you.
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I feel this so much, Victoria. Even though our circumstances aren’t exactly the same, we both are diagnosed with FA so your frustration is incredibly familiar to me. I think that connection is what keeps me going. For a long time, it seemed like my FA was only my problem. I wasn’t in contact with many others, diagnosed with the same disorder. That is one of the beautiful things about social media. Suddenly, I am able to connect to others with SA all over the world and it seems that I’m not as alone as I thought. So that is what I encourage you to do. The progression of FA sucks entirely. But I have found that it’s a lot easier to deal with when you are connected to others in the same boat. So I encourage you to be a part of things like the forums over here. There are also plenty of groups across social media, especially on Facebook. And lastly, I would encourage you to become a part of FARA at curefa.org . Feeling in solidarity doesn’t do anything to the symptoms that we have to face, but the solidarity makes us feel a lot better. We are never alone! Please reach out to me on here if you ever need anything!
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Welcome Christina – so excited for you to offer us your unique perspective – especially as a married person and as a worker in the health field, while having FA! I can’t wait to read more of your topics!
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Hey Sally. A program I recommend is Dragonspeak.What specific issues is she having though?
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Frankie Frankie Frankie,
I just scrolled on this and laughed out loud. I’ve been in quite a few weddings and what you describe has never happened to me, but that is something that definitely would.
I know I’m a jerk but LOLOLOLOL
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This is very hopeful it seems!
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Thank you so much Jonathan. This is very helpful
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these are mine. I love em and highly recommend! https://smile.amazon.com/gp/product/B018XNGQOE/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
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Also this topic title is so funny.
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@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.
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These are awesome tips. Thank you so much!
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Thanks so much for reading and for being part of the forums, Tim.
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This comment is why I haven’t given up on you yet.
It’s funny and a little scary to me how different we and our paths are from each other, but every now and then you sound like I hope I do. -
I love that thought, that many times people use “time of rest” as an excuse.
I’ll be thinking of that for a while. How do we differentiate between a legitimate time of rest and an excuse to not try our hardest, I wonder. -
That’s amazing. (Especially the soup part, LOL.) Did you ever think you’d oversee a podcast? Podcasts are such a cool medium, and your podcast, the Two Disabled Dudes, is especially relevant to us FAers!
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Thanks so much for the compliment.
Yor ideas of using little victories as defense from meaningless intrigues me and is an idea I try to hold as well! -
“When you’re on a mission with meaning, you can happily suffer.”
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I like that. I will think on it.
Your take sounds very existential, maybe mixed with stoicism (as existentialism should be). Do you disagree? -
You do a lot of stuff on the floor. That sounds weird. But I really admire that.
Are your floors hard or carpeted? -
Gross.
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I second this. I have this type too and love them.
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I WOULD LOVE TO SEE THIS
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I cannot believe I found a sport you don’t like.
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Wow. Good stuff.
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Never head of either of those. What are they about?