If
you’ve ever spent any time at all with me, you’ve probably noticed that I seem
a bit jumpy most of the time. It’s not uncommon to see my whole body splay out
like I have just seen a ghost after hearing a noise that seems insignificant to
everyone else in the room. Since questions and looks of puzzlement seem to pop
up (no pun intended!) all the time about this particular quirk, I have finally
decided to address it in writing.
Friends,
meet the Moro reflex. Also called the infant startle reflex, or just “the
startle” if you know the street lingo, this guy is a neurological leftover from
infancy, a souvenir, you might say. When a baby is born, he or she has a set of
primitive reflexes or automatic responses to stimuli that “integrate” or go
away as an infant develops. One of these is the Moro reflex. When a baby feels
like he or she is falling or has lost support, the arms, legs, and fingers will
extend and then retract, and the body will appear to “jump” as if frightened.
In typically developing babies, the reflex will go away between four and six
months of age. For me, and a lot of others with cerebral palsy, it stuck
around, and makes itself known several times a day. An unintegrated Moro reflex
or “startle” means that my response to sudden stimuli is hyperactive and I will
react strongly to triggers even if I don’t want to.
The
most obvious trigger is a loud noise, but flashes of light, sudden movements,
and even strong smells can also set off the response. I do happen to be a
nervous person, but having a startle does not mean I am “just nervous”. It is
also quite different than the natural jumping that neurologically typical
people experience. It is true that everyone will startle somewhat after an
exceptionally loud noise, but not everyone will experience the involvement of
the entire body or jerk forward as though something has just exploded in
response to the sound of bubble wrap. So I appreciate your good intentions when
you say "that happens to me sometimes when I hear *fill in VERY loud noise
*” but I assure you it is not the same thing. So what does this mean for me in
practical terms? How does it affect my everyday life? Here are some things I
would like you to know.
1.
The startle
reflex looks very goofy and sometimes it is very entertaining. I make jokes
about it all the time, but sometimes it is not funny because my whole body
jerks forward, my muscles get really tight, and my heart speeds up. The
startles have become increasingly painful as I have gotten older and have more
spasticity in my muscles.
2.
You don't have to
apologize for startling me if you didn't do it on purpose. Sometimes something
as simple as saying hello can trigger me, but that doesn't mean I'm not happy to
see you or that you did anything wrong. The response is so automatic that
sometimes you will set it off without doing much at all. It is okay… it happens
(a lot).
3.
Please do not set
it off on purpose. It causes me physical pain and it looks funny, not to mention
it can make me spill or drop everything in my hands, make me drive my chair
forward by accidently hitting the joystick, or cause me to fall if I am
standing. I know it is very tempting to startle me sometimes to get a goofy
reaction, but please don't.
4.
Preparing me or
warning me about a trigger won't change anything. Reflexes are so automatic
that they happen anyway and sometimes the warning makes me tighten up my
muscles in anticipation and worsens the response.
5.
I have to be very
careful with food and drinks in places where there might be a sudden noise or
motion. A startle while I'm eating could cause me to choke or spill something
that could burn me.
6.
It’s a tough
blow, but I will never be a firework technician, ambulance driver, balloon
artist, or electronic scoreboard operator (that buzzer, though). My motor
skills are probably further reason to stay away from these job offers. Just
maybe.
7.
I will probably
never date anyone in the above professions. Sorry boys. As if I need another
reason not to date a clown.
8.
I prefer if you
do not tap my shoulder or touch my hand suddenly to say hello. Please come in
front of me and say hi. If I startle anyway, it’s because your smile is so
dazzling. (Just kidding. Don’t flatter yourself.)
9.
If I'm at a party
with balloons and clowns it is hard to tell if I look keyed up because I hate
clowns or because the balloons might pop. It might be a little of both. You be
the judge.
10.
Several times a
day I look like I've just arrived at a surprise party. You are a narcissist if
you think running into you is that exciting every time. It's just my inner four
month old coming out to play. Some say it's even more noticeable on Throwback
Thursday.
So
what does this neurological surprise party mean in practical terms for you, and
for anyone I may meet in the future?
1.
You probably
don't want to sit next to me or in front of me at a combat movie. You just may
get popcorn or soda showered all over you, which isn’t ideal, unless you're
into that kind of thing.
2.
Don't be offended
if I don't want to accompany you to a production of “Annie Get Your Gun”. You
can call me though if she decides to get a super soaker.
3.
If you're sitting
across from me and you plan on being loud, you may want to wear goggles because
my food or whatever is in my hands may well come flying at your face.
4.
Note that I still
love the Fourth of July, but the song “Firework” has a whole new meaning for
me.
5.
If you have any
children that like to sing, “Pop Goes the Weasel” I make a pretty adorable
weasel.
6.
I will love you
forever if you knock on my door softly. If you pound on it, I blame you if I
punch myself in the face.
7.
I probably won't
come to game night at your house if we’re playing “Operation”. Don't ask me to
play “Chutes and Ladders” either. Real life has enough access fails.
8.
I have only
startled due to a smell one time. So if it happens in your presence, you must
smell pretty bad.
9.
Your attempt to
say “Boo” in a creepy voice isn’t actually as authentically ghost-like as you
think. My reflexes just make me a good audience. You are not a ghost. Don't
quit your day job.
10.Feel
free to throw me a surprise party (see 10 above). You don't even need to hide
and jump out to get the perfect reaction, so if you're a lazy party planner,
I'm your girl.
I hope that this guide has
demystified the Moro (startle) reflex for you, or at least helped you to
realize why I turned down your invitation to a Civil War reenactment. It’s not
you, it’s me. But if I startle because of your smell, trust me, it’s you.
My gosh, I adore this post. As a fellow CP blogger with a healthy dose of startle refle, this is amazing. I wrote my own (less humorous take) on this last summer: http://toniasays.blogspot.com/search/label/startle%20reflex
ReplyDeletethank you!
DeleteYou're a great writer....Thanks for articulating something I understand all too intimately. :D
ReplyDeleteThis comment has been removed by the author.
Deletethanks Kristen!
DeleteLOVE this!! I've been wanting to write a post about this too, because I've had similar experiences and I was starting to wonder if my easy startling was a CP-related thing. I have one friend in particular who loves to come up behind me and scare me -- and I love her to death, but she keeps doing it, even after I explained that my startle reflex is so exaggerated that her startling me could make me fall! She only means to startle me as a joke, but I think it's hard for people to understand if they haven't personally experienced it.
ReplyDeleteAnother thing I've noticed is that if I'm REALLY startled for some reason (e.g., a really loud fire alarm), sometimes my legs will start spasming, and it's really painful...I was wondering if you've ever had that happen to you?
I'm so excited to have found your blog (via Tonia's blog), and I can't wait to look around!
Thanks for writing about this! My 2 year old son has this and it's been refreshing to have a name for it and to know he's not the only one who has to deal with it.
ReplyDeleteThis comment has been removed by a blog administrator.
ReplyDeleteThank you! If you have any questions, feel free to send me a message in the contact form.
ReplyDeleteHi I have cp as well and this is all too relatable even up to the pain .... Thankyou for making me laugh and have a great day :)
ReplyDeleteThank YOU. Solidarity, sister!
DeleteLoved this post. Was researching the moro reflex as my 2 year old CP girl startles all the time and what a joy to stumble across this. So well written.
ReplyDeleteThanks! This is why I blog. I love helping people and connecting them with info. If you ever need advice or a chat, email me in the contact form.
DeleteHi my name is Juan Carlos I'm a person with CP I also started off really easily or get scared really easily I would like to have a chat with you because nobody understands me but thank you for your coming it made me feel
ReplyDeleteMy cousin has cerebral palsy and she cannot walk. She also gets startled very easily, where even when something like a pen falls on the ground she would shudder. I thought it had to with her CP, and it turned I was right. Very interesting.
ReplyDeleteIs there any medication that helps with this ? My son's reflex is very frequent and strong. I want to help him.
ReplyDeleteHi! There is no medication to directly treat an exaggerated startle but mine did improve some when I got an intrathecal baclofen pump
DeleteDear Kathleen,
ReplyDeleteThank you so much for this post. It finally helped me understand my lovely 8 year old daughter Saya.
I've always wondered what it was and no specialists could really explain it to me.
It's what stops her from walking on her own.
Her biggest trigger is moving fur (dogs!)
Have you find a way to manage it? I.e. not suppress it but catch yourself when it's happening to reduce the potential danger from it? (Saya chipped her front teeths last time).
Thank you so much for writing this with such an up beat mood!