Can't live like this...
August 21, 2013 9:43 PM   Subscribe

If social media and crowdsourcing is good for anything, I figure it's to find some sort of answer to questions like these. Here goes nothing... I'm a 23 year old with cerebral palsy and while I'm very much a special snowflake in that I've been gifted with normal function as far as most of my life is concerned-most importantly in terms of intellect- there's one part of my CP that's made my life smaller and more miserable than any wheelchair could. It's affected my relationships with and opportunities for friends, dates and jobs, and for a richer life in general. Help me find a way out. Snowflake details inside.

What I know: it's a speech fluency issue that's gotten worse over time. It isn't a stutter (though it looks like that on some days). It also:
- Doesn't have a very strong correlation with any physical or mental state. It can get worse when I'm anxious/ stiff, but it can sometimes be especially bad even around people I've known for years. It's usually always worse when I'm tired, but can be terrible when I'm on coffee/ stimulants or have just woken up from a nap. ( Coffee used to help). I can even be fluent for five seconds and stuck for the next 2 minutes
- Feels like I need to tense my entire body up to get a word out, but sometimes even that doesn't work and I won't even be able to 'start' a word. Basically, I WISH I could stutter.
- Makes me sound breathy and overexerted
-Is at it's absolute worst on the phone. I haven't been able to make a phone call in 10 years. (It's why I couldn't get internships in college, and why my mom had to call Target back for me after they called to set up an interview ( They obviously wouldn't speak to her and wanted me to call... ditto for interviews anywhere and any sort of phone business whatsoever).
I'd like to put a name to what this is, but I can't, even after poring though scientific journals and asking friends and family in the medical field, seem to get a clear answer. My best guess is something called 'spastic dysarthria' but even this isn't a 100% match and there's pretty much no research on it and no cure, or even a solid treatment.

I'm thankful that I live in this age of automation and that I can live, for the most part, an unencumbered and functionally normal life, in a utilitarian sense, even without the phone ( thank you Facebook!).
I'm still human though, and still live in a social world. I need to be able to stop backing out of seeing friends ( needless to say, they think me flakier than a toaster pastry), to get hired somewhere and to start dating, and hey, even ask for the time.

Questions, then:

What can I do? What can I use to achieve independence without feeling like a cyclops ( sound boards are out- I would just never be able to get over the embarassment).
What is this?? If you have a hunch- who should I talk to, where should I go and what should I try doing to treat what is quickly taking over my life?
How do I date/ keep interviews while this is a problem, if I don't have an email to write to?
What can I do about using the phone? My mom can't call for me forever.

I know this is a lot, and I know YANMD, but I know Mefites to be a resourceful bunch, so here's to hoping someone out there has the answer(s).
posted by marsbar77 to Health & Fitness (24 answers total) 5 users marked this as a favorite
I can't, even after ... and asking friends and family in the medical field, seem to get a clear answer.

The first question is, who exactly were these people "in the medical field?" Were they doctors? Researchers? Physical therapists? What were their specialties, if any?

It would help to know who you have already asked.
posted by cairdeas at 9:55 PM on August 21, 2013

Response by poster: Sorry, should have been clearer. The person I had in mind is a rehab division chief at NYU Medical Center. I've also asked neurologists and physical therapists, but most of the legwork was me going online and reading what little I could find.
posted by marsbar77 at 10:01 PM on August 21, 2013

Have you tried singing? I've heard that stutterers can often sing without stuttering, not a solution for you, but it may be diagnostic, that is, is your condition related to stuttering.
People generally do not stutter when they sing, whisper, speak in chorus, or when they do not hear their own voice.
posted by 445supermag at 10:09 PM on August 21, 2013

Response by poster: I do sing, and it does help- I just can't bring myself to use that as a technique where it really matters ( when I'd look ridiculous doing it). Sigh...
Okay, no more threadsitting for me.
posted by marsbar77 at 10:10 PM on August 21, 2013

The term that comes to mind is expressive aphasia.

I would recommend you undergo an actual neurological evaluation (I'm not clear from your response if you've just "talked to" or been evaluated by one). There are neuropsychologists who can do these kinds of evaluations and who also work on cognitive rehab, which may apply to what you're experiencing. A speech-language pathologist would also be a good resource and may be able to evaluate you.
posted by aspen1984 at 10:13 PM on August 21, 2013 [3 favorites]

Might not be so great for dating and setting up interviews, but if you must make yourself understood on the phone you can use one of the services for the deaf to type and have someone else speak.
posted by yohko at 10:16 PM on August 21, 2013 [2 favorites]

I have cystic fibrosis. I have reversed a lot of my issues. It has taken a lot of years. In the process, I have reversed some neurological issues I had. Some thoughts:

1) Look up nutrient depletions caused by any and all drugs you have ever taken. Consider treating for those deficiencies. Example: I took Advil daily for about six years. I also took high levels of b vitamins for a lot of years, in part to keep my restless leg syndrome under control. Shortly before I got off the advil, I learned it depletes one of the b vitamins. After getting off of advil, my need for b vitamin supplements dropped,dramatically. I no longer have restless leg syndrome. I sometimes have annoying issues with my feet and lower legs, but it is much milder and relatively infrequent.

2) Look up info on nutrients for the brain and for the vocal chords. Consider that the problem could be in either or both areas. I took lots of b vitamins and co-q-10, ate high cholesterol foods, switched from table salt to sea salt, and got picky about oils. All of those impact brain function. I went through periods where I had speach issues. I rarely have them anymore.

3) Brain issues are slow to heal. I had to raise the bar on my overall health to make good progress in that area. Lots of other things improved first.

You can memail me if you wish. A lot of my comments about health stuff get deleted. So I am very reluctant to say more than that publically.
posted by Michele in California at 10:22 PM on August 21, 2013 [1 favorite]

You don't mention seeking actual medical intervention for this very very important thing that is holding you back.

Start seeing doctors to have this addressed.

Good luck!
posted by jbenben at 10:23 PM on August 21, 2013 [1 favorite]

Have you seen a speech pathologist? If you're in NY, I have heard good things about the ladies over at Simply Speaking.
posted by These Birds of a Feather at 10:40 PM on August 21, 2013 [2 favorites]

Could it be this?

I wrote a whole thing about singing before I saw that somebody else had covered it. But, I think it's worth investigating. If other people have trained themselves to speak using singing, they must have techniques they could pass along. I know Scott Adams (the cartoonist) did this, so maybe he'd be somebody to investigate.

Adams didn't just sing, he also figured out he could speak in rhyme. Does rhyming help? It'd be less embarrassing than singing, anyway. At the very least, you could use it with a friend to build up your speaking skills.

That Adams article also made me wonder if you could speak better if you tried a different voice. Maybe if you did an English accent or an impression of Bogart or something, it'd trick your brain and get past whatever is preventing you from speaking.

Maybe I have no idea what I'm talking about... but wouldn't a speech therapist be the person to talk to about this?

Best of luck. I really hope you can find a solution for this.
posted by Ursula Hitler at 10:42 PM on August 21, 2013

A slightly different take- you say this has affected your ability to get friends and dates. But nice people who are worth befriending or dating won't look down on you for this. Have you explained to them that sometimes you have trouble talking due to your CP, and that sometimes that means you just don't feel up to hanging out? If they understand this they probably won't think of you as especially flaky.

I used to have a friend with speech problems and it killed us when we knew what he was trying to say and he couldn't get it out, because we never wanted to be rude and interrupt him if he could do it, and we would have hated to embarass him. We developed a sort of hand motion whereby he would indicate that it was ok for us to fill in the blanks for him. It wasn't as severe as what you're describing, but maybe you could do something similar to indicate when your words are stuck?

Also, have you ever considered learning ASL? It's really cool!
posted by windykites at 10:53 PM on August 21, 2013 [4 favorites]

As suggested above, there are services for people who have speech difficulties to be able to use the phone. It's called the Telecommunications Relay Service (that's US; I assume you are in the US because the majority of people on MeFi are; otherwise I know Australia has the National Relay Service and I'm sure the UK and Canada have similar services). It's not the most user-friendly piece of government guff ever written, but there are solutions there.

I agree with those suggesting a proper evaluation by doctors/speech therapists/neurologists. I don't think doctors will be able to help you much apart from referring you to specialists, but that will still be helpful. I suspect that speech pathology will be the first stop, they can probably arrange neurological tests if appropriate.

For the short term: get a small notepad and pen, glue: "I have neurological speech difficulties" or similar to the inside cover so you can show that to people and then write your question/comment/whatever. That can cover you with asking the time/emergency situations. Tell your friends that this is what's holding you back from being more social, anyone worth keeping as a friend will be fine with that and you will find your social possibilities - and romantic ones - expanding.

And yes, learn sign language - even if you get over your speech difficulties, how awesome would it be to know sign language?

There are people out there who cannot speak at all, ever. I say this not to make you feel guilty, but so that you know that you're not alone and there are resources out there to help you.
posted by Athanassiel at 12:36 AM on August 22, 2013 [1 favorite]

what about planning activities with your friends that are structured so that long pauses and occasional silences are ok? Like, playing scrabble, or chess, or doing crafts. If you don't sit there feeling awkward while your friends wait for you to talk, you may be more comfortable around them.
posted by 5_13_23_42_69_666 at 1:10 AM on August 22, 2013 [1 favorite]

My friend, I also commented over in another question of yours. I have physical disabilities. Depending on the state of your insurance, GO TO A DOCTOR (do not "ask around" or look on the internet). It may not, in fact, be easy to solve, probably won't be, but no responsible physician is going to come up with a solution just on the sidewalk, so to speak.

If you've been evaluated? As the commenter said above? Get a second opinion. And a third. WADR, this is NOT what the hive mind is for. Try three or four rounds of medical treatment, and THEN give up.

If you do not have insurance, start looking around for free clinics in your city. Yes, they can refer you to large, expensive hospitals, also for free or cheap. The storefront is just an access point.
posted by skbw at 5:43 AM on August 22, 2013 [2 favorites]

For phone calls, what about recording some basic words and phrases for use during calls? Obviously this won't work with longer calls with friends, etc., but you could explain to people you know that you have extreme difficulty talking on the phone so you use the recording to speak for you?

I think even a basic library of 50 words and phrases would take you through a lot of phone calls.
posted by arnicae at 6:06 AM on August 22, 2013

It's not clear if you've been formally evaluated or are trying to solve this on your own, but if this is affecting your life as you describe, I think you need to do several things:

First, start with your GP and get referrals to appropriate specialists. Formal evaluations and examinations are most likely to produce solutions that will work for you - much more likely than trying to do it on your own. There is help out there - take advantage of it.

In the meanwhile, you need to stop getting in your own way:
I do sing, and it does help- I just can't bring myself to use that as a technique where it really matters ( when I'd look ridiculous doing it). Sigh...
What is more embarrassing, singing, or not being able to communicate effectively?

If you explain that you have a speech issue, and that singing allows you to communicate more easily, people will deal. Work on your confidence level in using the one technique that you've discovered actually works until you get professional evaluation and treatment.
posted by canine epigram at 6:38 AM on August 22, 2013 [1 favorite]

I almost responded to your previous question with something similar, and now, in a virtual sense, I am hopping up and down in the back of the class with my hand raised, so here goes:

I have CP, and I embarrass myself regularly. To date, I have lived through every one of these incidents, and as much as I would like to be all suave and cool about, well, everything, sometimes I am just that girl who falls on her ass in the parking lot and can't get up without help.

I feel like the thing that has helped me most is being realistic about my limitations, and articulating my needs as clearly as I can. I don't have to give people a confessional explanation about my disability, but I do have to be able to say "Could you lend me an arm so I can step down off this curb?" or "What's the best way to get into your office? I have trouble with stairs."

Forget about passing, blending in or fading into the background. Even when I think I do, I don't, so screw that. I try to look at asking for what I need or setting limits as taking care of myself, so I can quiet the internal monologue of "what if there are stairs, what if I can't get in, what if I have to ask for help, what if, what if?" and focus on where I am and the people I'm with.

You don't have to push your boundaries all the time, but your speech issue is not going away, and you deserve to be able to articulate your needs, whether through song or a voice synthesizer, or after a whack of speech therapy. Please do try some different things until you find something you're comfortable with that works.

I do not mean to be like Tony Robbins here: motivation alone is not enough to overcome monumental societal prejudice against people with disabilities. I like to be independent, and I'm an introvert, so asking for assistance is not my favorite thing. But occasionally, that help I get feels like letting people in, and some of the people I let help me become allies, people who care about me as a person.

Long story short? Reaching out for help makes my world feel bigger, even after I've fallen on my ass in public. Good luck!
posted by deliriouscool at 8:19 AM on August 22, 2013 [8 favorites]

Speech therapy, and see your doctor, who should recommend specialists to investigate. Vitamin and nutrition therapy is worth trying. What you describe is similar to what I observed in someone who had Parkinson's disease. You could talk to a doctor about a trial of dopamine-enhancing medication, or eat a dopamine-enhancing diet.
posted by theora55 at 9:58 AM on August 22, 2013

You know, you say what you're experiencing isn't a stutter, but it kind of sounds like a form of stuttering to me. I don't have CP but I developed a severe stutter when I was 10 and have lived with it ever since, to varying degrees. When it was more severe I would get "blocks" like you describe, where it's like pressure built up behind the start of a word and I just couldn't get anything out. Seemed to be the worst with certain hard consonant letters beginning a word. It's hard to describe but it sounds similar to your experience. And of course talking on the phone was the worst! People get weirded out if you make a call and then there's just silence for thirty seconds while you try to form a sound. For some perverse reason as a career I went into trial attorney work which as you might imagine is sort of a high wire act sans net for stutterers.

Anyway, I think you ought to give speech therapy a try. Or at least consider it. A few years back I decided this issue was holding me back professionally and found a speech therapy clinic at a local university focusing on stuttering therapy. They used the "camperdown" method. (pdf linked). I thought it was helpful. Hasn't magically cured me or anything but it helps. It's basically a method where you practice slowing your speech down, wayyyyyyy down, to the point that it's smooth and fluent, then slowly building the speed back up using the same speech and breathing patterns. It's kind of interesting but I found it hard to get "blocked" when I spoke verrrry slowwwwly using a specific breathing pattern. Something to think about. I don't know where you're located but if you like I can give you the name of the guy I used and he might have referrals. Good luck!
posted by bepe at 10:00 AM on August 22, 2013

From your description, it sounds like you may suffer from the form of stuttering known as "blocks" rather than some more mysterious medical ailment. It's a common misconception that all stutters actually stutter. Many stutters just can't start talking on command, or have to avoid certain words or sounds by conforming speech behaviors. Rather than sounding stuttery, these blocks manifest in awkward pauses during speech or phrase repetition as the stutter's mind forms alternative phrasing for the upcoming words.

Because of your CP, it is possible that your brain is not as quick at mending your speech on the fly to find little tricks or alternative phrases to manage your blocks, so instead you just can't talk.

There are many techniques (breathing and otherwise) that you can research to help manage your blocks better.

To confirm, if you can sing fluently, or speak fluently when alone, or speak easier when there are loud background noises (like a loud engine humming), then my diagnosis is likely correct.

If you are male, this is even more likely as men are statistically significantly more prone to stuttering than females.
posted by jameslavelle3 at 10:10 AM on August 22, 2013

I haven't heard your speech, and I'm not your speech therapist, but you can be a person with CP and also a person who stammers. There are different types of stammer, and as those above say, you sound like you're blocking. In some ways it's worse than stammering with repetitive sounds because at least then people know what's happening!

You've got a speech problem - see a speech therapist! They will be able to offer a differential diagnosis. It could be that the spasticity from your CP makes your stammer worse but that's kinda irrelevant - the compensations would still be the same.

Good luck!
posted by kadia_a at 10:49 AM on August 22, 2013 [1 favorite]

I don't know about cerebral palsy advocacy organizations in particular, but many medical advocacy organizations are good at providing referrals. You might try contacting your local United Cerebral Palsy affiliate for recommendations. Also, I have to say you're getting some questionable advice in this thread. Singing and sign language might be great, but I don't think you have a do-it-yourself project on your hands. It's unclear whether you have pursued speech therapy, but this is exactly what it is for. If local speech therapists haven't been able to help you, consider getting a consult at through a university speech pathology clinic. Just as an example, here's the one at Northwestern. Also, see this book: Cerebral Palsy Resource Guide for Speech-Language Pathologists. NOT suggesting you read it, but just noting that this is indeed something that professionals are aware of. You should fully avail yourself of their expertise.
posted by Wordwoman at 11:01 AM on August 22, 2013

I'm a speech pathologist. I'm not your speech pathologist. I'm going to suggest that you find a speech path who can evaluate you in person. You described what you're experiencing really well, but nobody can diagnose you without hearing you speak and seeing you in person. If you live near a college see if they have a program for Communication Sciences and Disorders - this is the program that trains speech paths, and if they have a program they also probably have a clinic that's taking clients. They can evaluate you and help you. If you have good insurance you can ask your doctor for referral to a speech pathologist, or check (if you're in the United States) to find a private practice clinician who could help you out.

I'd also suggest checking out the National Stuttering Association (again, a US organization). Your experience really parallels the experiences of people who stutter. Whether or not you really stutter, it might help to connect with some people who experience the same day-to-day challenges that you do because they'll have practical advice on how to deal with it. Some cities have monthly meetings of local NSA members, and they can be really helpful to go to.

Best of luck.
posted by christinetheslp at 7:23 PM on August 22, 2013 [1 favorite]

Best answer: This is from my friend who has CP and also had speech problems like you have:
"He needs to get involved in groups for people with speech disfluencies. A speech disfluency is not necessarily a stutter, but often is, but that still shouldn't prevent this person from attending, because no one ever knows who they're going to meet in these types of groups. He might be turned off by the name, but the National Stuttering Association (NSA; they should really look in to changing their acronym) is a 'by us and for us' kind of organization, and they hold big retreats every year, and it's all young people and middle-aged people speaking for themselves, and although I've never been, I've thought about going, because it seems really empowering, at least to people who have severe speech-blocking ('gaps') problems, severe stammering etc etc etc. There was a short film I once watched that I now forget the name of, an intro film to our main feature that month at the disTHIS Film Series, that went in to detail about the various assocations run by and for people with these speech issues, and so that's how I was able to see that it isn't a charity thing but a 'real' thing, and it made it seem pretty cool."
posted by amapolaroja at 9:18 AM on August 23, 2013

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