Frankie Perazzola
Forum Replies Created
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Agh, this is so tricky. Ive met some great people through Bumble and I think its because I have been upfront about me using a wheelchair. The pictures I have on my profile are a mixture of selfies and full-body shots in my chair and also me, standing. You avoid that dreaded conversation of feeling like your’e “breaking the news” and you skip people who would waste your time.
Being single and dating with FA is INSANE but doable. Just be honest from the get go
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I was diagnosed at the age of 22, Im 26 now so I am fairly new to the whole process. When I was newly diagnosed, I used a cane but ended up turning into a mess. At first, I genuinely found balance with it but then it became obsolete. I noticed it wasnt helping me physically but it alleviated most stares and questions I would usually get in public.
Now, I use a walker. Around the house and comfortable spaces, I don’t need assistance. Just tap on the walls or furniture. However, I tore my ACL in 2017 and my dependence on a walker became a necessity for longer distances.
I use a wheelchair at public events, like attending a sports games, or anything that requires a lot of walking.
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Hi there Natalie.
Don’t be discouraged if you don’t get a response right away. Since the forum just launched, we will be waiting for other parents to sign up too! This is EXACTLY what this forum is for! Thank you for your question.
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This is DEINITELY a topic I wanted to be apart of..
I have been smoking since I was in high school. Obviously, I didnt use pot as a medical treatment like I do now but this is something I am familiar with. I do not smoke during the day anymore, because it makes me unmotivated and lazy but, I do smoke at night as well as ingest CBD oil and rub CBD cream on my joints.
Also, because I am still fairly mobile and new to this whole FA world, smoking sometimes makes me forget I even have FA. Of course, until I have to move (: But, its nice to have a break, mentally, like that.
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Kyle, thank you for sharing this. Speaking as someone who was diagnosed as an adult, I truly commend you and everyone else who has had or is currently dealing with school and having FA. I went through school with no physical issues and it was the hardest time of my life. Can’t imagine the adjustments and emotions you have gone through. Way to keep pushing and for staying positive. You make such a difference in the FA community!
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I agree with Matt, we’re so fortunate!
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Cant see the link, can you resend!?
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Yes haha seems like it. Believe me, I know how lucky I am to have those options in the first place.
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Thank you for sharing! You are only being honest and describing who you are… Doesn’t matter if others become offended anyways, its your life, not theirs.
Other people, like me, feel similarly so thank you!
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I love everything about your position, Matt! That’s where I stand too
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Your’e the kindest (:
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I agree 100% with you after reading this piece! Fingers crossed they can make some kind of headway and collab to make it happen.
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It definitley helps with my restless legs at night.
The oil and cream do not get you “high” at all. So you wont feel any different!
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I definitely dont use the CBD cream as much as I use lotion haha its more expensive and I only apply to areas that hurt or are sore. I wonder if the cream can be as moisturizing as regular lotion?
If it ever reaches that point, I’ll be bathing in it haha I have eczema too (on my hands) so moisturizing is a huge deal for me.
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MAY!? What the heck!
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We know, first hand, how difficult it can be to navigate life with FA at a young age. Is school difficult? Hanging with friends becoming harder? The looks you get in public?
What kind of issues are you facing?