Dystonia and Eating Disorders- A Relation ???

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Permalink Reply by beka on August 6, 2008 at 11:58am

OK, here goes...This is not a topic easy to discuss or even publicly acknowledge to everyone as many regard me as some kind of "icon " who walk on water, which believe me , I AM NOTand DO NOT. Nor do I want to be looked as such. I have thought and thought about this...and wondered if food and the desire to avoid eating in public has led to a partial eating disorder in my case. YES, admission...Here , in NYC, we are always on the run, so no one cooks, everyone does 'take-out'. There's no time to cook , let alone eat, we're all in a rush always...I can't remember the last time I cooked an actual meal here in NYC. I am always getting notices from the gas company - that my gas usage is too low for the area and whether I would like it to be turned off...I have always been on the thin side...always moving...even when working..I would never sit down...or EAT during my 12 hour shift..focusing on my patients. It was easier to eat at home in the flat position,without choking episodes..At this point, even with DBS, my doc thinks that probably I have some more disease progression..GI motility issues with choking episodes...hei, we won't even discuss occassional drooling...!!! Plus, by not eating at work, there was less explaining of dystonia to do on a regular basis, so I began limiting my food intake at work..but have worried if it was really an unconscious take on a "Hidden eating disorder"...In reality when reading about the dynamics of eating disorder- I am the oldest kid in the family, most definitly the perfectionist, to 'doer' and , gosh who knows what else????..Bu I have never been obsessed about counting calories or my weight...I do question whether eating is simply tough to do or a forgotten item on my to do list nowadays because of the constant NYC rush rush attitude or lifestyle ????

More...beka

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Permalink Reply by ramona on August 6, 2008 at 9:09pm

Hi Beka,
I am curious about your GI motility issues and the choking episodes you have. Do you mind sharing what the symptoms of the motility issues are? I have chronic diarrhea, but thought it was due to other medical issues (gallbladder removed, medication for diabetes, etc). Now, I have started gagging every morning when I eat breakfast, so I am starting to wonder if this is related to the dystonia. Of course, finding a doc that will entertain something as bizarre as that is out of the question, though, at least in my neck of the woods. ;-)

I am still able to eat in public, thankfully, and have more issues with overeating than undereating...

Thanks!
Ramona

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Permalink Reply by Rosemary on October 13, 2008 at 11:47pm

Beka: As a nurse, you know how important nutrition is. Not eating during a 12 hour shift- this is not good. How much under ar you from your normal weight? Our nutritional needs don't go down as we get older; indeed they go up because we need to get as many nutrients typically out of fewer calories (for some of us). Have you thought about how you can eat more confortably in public- soups, sliced apples, sandwiches cut into small pieces? What about going out and eating on a park bench, courtyard table, or someplace peaceful. Seems to me hospitals have lots of eating places.Fruit smoothies have their place but should not be over relied on.

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Permalink Reply by Rebekah on August 8, 2009 at 1:08am

I've asked this question a LOT. In fact, some friends from my adult life definitely believe I have some sort of eating disorder becuase they've never seen me eat. However, for me, there is a real difficulty eating in public,... so it isn't just about avoiding food. I have difficulty swallowing, chewing, lifting utensils to mouth, but I also have been overweight since I started walking (was put on my first diet at 5) and was often told that everyone was trying to 'feed the cute fat kid' (not exact quote) and that I shouldn't eat for nourishment, but only to maintain a sense of polite society while in public.

Sounds like a strange story, doesn't it? LOL Add the tightening of muscles to this and you don't get much eatin' from me!

I'm pretty sure I have an eating disorder. I avoid thinking about food and I don't enjoy food. Even before it became very difficult for me to prepare and eat it, I dealt only with quick foods, trying to keep healthy choices around (cereals, fruits, etc.)

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Permalink Reply by Rosemary on August 8, 2009 at 11:47am

Rebekah: Thanks for your story. Have you ever thought about seeing a Registered Dietician? Quick foods are not often the best source of nutrition. You mention fruit and cereal, which are essentially just carbs (and certainly not bad!) , but humans need a well rounded diet- with healthy fats and protein too.

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Permalink Reply by Rebekah on August 10, 2009 at 2:08am

Rosemay, thank you! That is an excellent suggestion. Unfortunately, I am not in a situation conducive to selective diet modification. When I say cereals, I mean to say grains, not so much processed cereals, although i eat them, too.
It would be so neat to revamp my intake and live by an individualized plan.
Currently, my body isunable to handle many types of food and I function best on crude, raw foods... fruit is best. uncomplicated, water based foods...
I am blessed to have studied nutrition prior to my the series of exacerbations I've experienced in my adult life and can 'theoretically' balance nutritionally.
whether i can plan, shop, afford, prepare and eat the diet is an entirely seperate issue. LOL
(((((rosemary))))) for caring!

I get my protein from grains and beans. I eat berries anda lovely variety fo fruits. I eat nuts, vegetalbe.... love olive oil, hate avacado lol...
I'm not the sterotypical fat girl, in that, I became huberfocused on living a healthy lifestyle,,, excelling in sports and sticking to a disciplined diet. I'm still fat, partly because you have to eat to lose weight and I hate eating. Also, my inability to eat on a regular schedule, and a tendency to eat latr in the day...

my concern these days is about giving my body the nutrients it needs to function, whether I'll every look the part or not. lol

I love you for caring@ lol thanks

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Permalink Reply by Rosemary on August 10, 2009 at 2:15pm

Good luck, Rebekah. You find it hard to eat earlier in the day, but tend to eat at night? Please let us know if we can help.

R

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Permalink Reply by Rebekah on August 11, 2009 at 1:35am

Rosemary,

I dont' know what anyone could about this... more than let me talk about it with others who offer advice and have an empathetic heart.
You've done enough already. Besides, I'm doing the best I know to do now. Outcome will be ok as long as I keep doing the best I can. :)
Bekah

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Permalink Reply by beka on August 6, 2008 at 12:18pm

May this one post - I should deleetttte....??? CONTOL>>>

beka

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Permalink Reply by sisdailey on August 6, 2008 at 12:53pm

Hi Beka:

I think this is a great subject. I don't have a eating disorder or maybe I do. I certainly will not go out to eat at all. I do not want people watching me. Chewing makes my neck spasms much worse. I have to be careful not to get chocked. Sometimes when I take a pill the water will not go down just right and it will run out my nose. I have to be very careful. I set and eat with my head lowering forward.

I think my habit is eating to much. I eat when I take a pill so it will not upset my stomach. I usually take nsaids so I always worry about getting a bleeding disorder from them.

I don't cook much at all. We get somethng brought in to eat a lot of the time. My husband does cook at times. God bless his heart. Yesterday he baked a roast but when it was ready to eat he sliced it wrong so it was tough. We also had creamed potatoes and a salad.

Another thing food is very expensive. People who live on social security can barely afford to buy groceries. They can eat out cheaper then buying groceries these days. The price keeps rising just like everything else.

Don't get the wrong impression of my husband he is very compassionate with me and brings me food when I am in bed and don't feel like getting up. I feel I am very blessed to have him in my life.

sisdailey

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Permalink Reply by Trudy on August 6, 2008 at 12:39pm

Beka,

Thank you for bring up a topic that is sensitive for me, as noted in a previous discussion, and something that I struggle with daily. I always joke that I wasn't given the typical 'girlie gene' because growing up I was not concerned much with my outward appearance(besides my clothes matching -- perfectionist on that one), I didn't care to shop, or was I overly conscious of my weight. I was always athletic up until my accident when I started to feel more unsteady on my feet so I gave up most sports.

I have had tremors with my right hand for years and they have recently become more severe. I used to joke that when I ate soup I often flicked it across the table. I would say this in jest but all the while mortified that I was unable to control my hand.

Since my weight is such an issue for me right now (barely 96lbs) I have recently begun paying more attention to my actions when I am home eating and when I may be out with friends. One thing for certain is that I unconsciously monopolize the conversation when I am out so I don't have to try and manipulate my utensils at the risk of my friends either staring or being embarrassed for me. I then end up taking my meal home and most of the time eating it later. I have relayed this sad revelation to some of my close friends that I spend a lot of time with and asked that when we may be out to eat to be mindful of my unconscious habit and encourage me in changing it. It's not their responsibility to break it for me but I think their recognition of when I am doing it will be helpful.

That is only one part of my particular situation...it is very easy for me to avoid eating when I am home. Again not so much purposeful, rather everything else 'appears' to be more important. Or I think I can squeeze one more thing in, then I'll eat. Before I know it I'm about to pass out because I need to eat! Now at home I set a timer for every 2 hrs because that is how often my system needs little snacks. When the timer goes off, I must stop what I am doing and eat something. If the task that I am doing is of extreme importance, that is fine then I just grab a handful of nuts or something to put in my system and reset the timer for when the task is expected to be done and then I eat more. So far so good. Ultimately, I love myself enough to need and want to make this connection. I hope that made sense.

I felt a sense of relief when years ago my doctor stated that he believed that I did not have an eating disorder; however, for me that still didn't answer why I had such a difficult time eating. This topic fits more comfortably for me as to possible connection than any other I have encountered.

Thank you again for the wonderful 'taboo' topic.
Trudy

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Permalink Reply by beka on August 6, 2008 at 2:24pm

Well, I feel not so alone now...I do best eating flat, so in a way I avoid eating in public - that includes at work...it just gets way too difficult to explain to people why you eat the way you or even what you eat... I drink alot of fruit shakes that contain alot of calories... I'm not into Ensure or those other Boost drinks...but into Papaya, Mango , Mixed Berries Smoothies...the only time I really ate out in public is when I was out filming with NBC and eating pizza the first 6 months after having had DBS...that felt good to be able to go into a pizzeria place, order and sit down and eat without everyone staring at you...Why they stare, beats me ??? ( I glare back, then they look away embarrassed...! )

I also love eating pasta with sauces- alfredo... should go live in Italy !!
But, I do wonder if the embarrassment of eating in public ever goes away ??

NBC Link : Free Video - http://www.msnbc.msn.com/id/8335651/

beka

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