Meniere’s Disease

A Change.org Petition for Musicians U2 to Bring Awareness of Meniere’s Disease

 

As many of you know, I have an inner ear disorder that forced me to stop working and eventually have to go on disability because the specialists do not have the tools to help me.

I am, sadly, far from alone in living and dealing with a disability and doctors being unable to help me get better and go back to leading a productive life.

To say that funding and research for inner ear disorders are woefully lacking is an understatement. As those with vestibular disorders know, the public does not realize how many people of all ages are afflicted with inner ear disorders.

I also believe that it will take the involvement of A+++ famous people to help bring a much greater awareness and understanding about vestibular diseases. This, in turn, would bring about more funding and research. One has only to think about the effect of Jerry Lewis and the Muscular Dystrophy Telethon that so many of us watched. Or Michael J. Fox and Parkinson’s disease. Or Christopher Reeve and spinal cord injury.

While we don’t know why Lewis became involved with MDA, with Fox and Reeve it was personal. Fox has Parkinson’s and Reeve became paralyzed with a spinal cord injury as the result of being thrown from his horse at an equestrian event. The funding and research that has been made possible due to their involvement and activism is immeasurable.

There is a petition on Change.org right now (March 9, 2015) that is asking U2 to help bring awareness to Meniere’s disease. This is the request from the petition:

We are respectfully asking you Bono and your U2 band mates to consider helping us to raise awareness about this debilitating disorder with a simple statement before you sing your song “Vertigo” during your 2015 concert tour. A simple:

 “We need to find a cure ‘now’ for the millions who suffer lives filled with vertigo and deafness caused by Meniere’s Disease.” would work wonders for us.

I hope you will take a few moments of your time to check out the petition, add your name and share this petition so that we can hopefully get A+++ famous people involved and help bring awareness to vestibular disorders.

I hope that one day we can talk about how people are being helped by the results of increased funding, research and discoveries. I also hope and look forward to the day that we can talk about how little people’s “quality of life” has been affected and how immeasurable the help of A+++ famous people has been.

Thank you.

NHBPM – Some Advice If You Or A Loved One Lives With Dizziness

Welcome. This post is part of the WEGO Health National Health Blog Post Month (NHBPM) challenge for November, 2012.

You or a loved one has been diagnosed with dizziness. Here’s some things that I have learned along the way.

DIZZINESS IS NOT ONLY VERTIGO! This was missed by most of my doctors as I have disequilibrium/off-balance issues. I could count on one hand the times I had vertigo and a couple of them involved having bad head colds. Emedicinehealth.com has a list of symptoms of dizziness. Depending on the cause of the dizziness, some symptoms include:

Breathe. I know it’s a cliché but it can be one of the best things you do. Stop and breathe when things become overwhelming.

Go through the stages of grief – denial, anger, bargaining, depression, and acceptance. And don’t think that when you have dealt with each stage that you are done. I still deal with anger and depression.

Getting the common cold or having allergies will sometimes drain you of whatever energy you may have. And, because the ears, nose and throat (just like the specialist you see) are all connected, dizziness could become worse.

Use the internet to find others with chronic illness, both those who have dizziness and those who have other chronic illnesses. You will learn from many.

Share what you know, what you’re looking for and how you feel. There are others with knowledge and experiences that can share and help you and one day you may be the person who is helping someone newly diagnosed.

REMEMBER, YOU ARE NOT ALONE! You will find this out very quickly and it will bring you comfort realizing that others know how you feel physically, mentally and emotionally.

Get out of the house, even if you are only out for a few minutes. You may not be able to do it every day but getting some fresh air and maybe going for a walk for a few minutes close to your house can help in so many ways, not just physically.

Do strength training exercises. The stronger the muscles, the more endurance and stamina you can try to build and the farther you could walk.

See a physical therapist if your doctor thinks it could help you.

Find a support group in your city. Many cities have groups for people with Meniere’s Disease.

Wear easy to clean, comfortable clothes and walking shoes with good ankle support. When you have to go out but feel miserable, you don’t want to aggravate the situation by wearing uncomfortable clothing, clothing with buttons and shoes that make you unsteady. Most of my clothes is summer wear – shorts, skirts, tank tops and walking shoes with ankle support. This helps on days when you feel like hell, are hot, have thrown up before getting to the bathroom or getting your barf bucket and you want to get the clothes off you as quickly as possible.

Keep informed and your mind active. If you have to stop working, you miss everything from the gentle banter to philosophical debates. Read newspapers and magazines, watch videos such as TED and Big Think. Play games on the computer, do crossword puzzles. Keep engaged.

That being said, there will be times that you will have brain fog. Find ways to help yourself such as such as keeping things in their proper place, writing things down, using apps. Whatever you find works for you.

Eat low-sodium, balanced meals. Our bodies need sodium but having too much of it can cause problems for those with dizziness. The sodium retains water in the body and possibly increases inner ear pressure. And eating a well-balanced meal is a given but when you don’t feel well or don’t have the money to always buy healthier foods, it can be hard. But, there are many sites that offer tips on how to eat better on a budget and recipes for easy to prepare meals.

The most important advice needs to be repeated and that is YOU ARE NOT ALONE.

Meniere’s Disease Vs. A 17 Year Old – Who Is Winning?

(Image via Ventura County Star)

There are many of us with inner ear disorders. We know all too well that little is known about the various disorders. There is little research being done. And it quickly becomes frustratingly apparent that when we go to our doctors for help, we find that there is not that much help for us.

Everyone is affected differently, from mild to severe, but there are many consistencies. Vertigo, tinnitus, disequilibrium, nausea and hearing loss are only a few of the side effects.  It is a life-changing invisible chronic illness in so many ways. It affects many of us daily. It is so bad and unrelenting that some people have had to give up their jobs, their normal routines and their social life. The reduced mobility that comes with an inner ear disorder also has a domino effect on other areas of a person’s health – muscle weakness, a lower tolerance to colds and flues and the increased risk of other diseases such as heart disease and diabetes.

And this brings me back to the question in the blog post title “Meniere’s Disease Vs. A 17 Year Old – Who Is Winning?”.  It may be 17 year old Samir Malhotra who is helping to bring us one step closer to discovering what causes Meniere’s Disease. This article from the Ventura County Star explains how Samir, while working on a peer group project for his anatomy class as well as a science fair project, has possibly discovered a cause of Meniere’s Disease! In the article, Ivan Axel López, adjunct professor of surgery, division of head and neck, David Geffen School of Medicine at UCLA, says:

“His project was related to propose a model of how water movement is regulated in the human inner ear, and how a disbalance in water transport affects inner ear function,” López said. “He writes excellent abstracts and significantly contributes to the elaboration of research reports. In addition, he is a co-author of a manuscript recently submitted to the Otolaryngology and Head and Neck Journal. This manuscript is the first one to report the presence of cochlin (a protein unique to the inner ear) in vestibular endorgans (definition follows) obtained at surgery from patients diagnosed with a debilitating hearing disorder called Meniere’s disease.”

This definition of endorgan  (found at the bottom of the page) is from http://medical-dictionary.thefreedictionary.com 

end organ,

n the expanded termination of a nerve fiber in muscle, skin, mucous membrane, or other structure.
end organ, proprioceptor,

n.pl the sensory end organs, located mainly in the muscles, tendons, and labyrinth, that provide information on the movements and position of the body. Four specific end organs are the muscle spindles; Golgi corpuscles, stimulated by tension; Pacini’s corpuscles, stimulated by pressure; and bare nerve endings, stimulated by pain.
end organ, sensory,

n the sensory nerve fibers that end peripherally as either unmyelinated fibers or special structures called receptors. Receptors are situated in the skin, mucous membranes, muscles, tendons, joints, and other structures and also in such special sense organs as those for vision, hearing, smell, and taste. The receptors are organized into a system that relates them to the environment: exteroceptors, interoceptors, and proprioceptors.
Samir has applied to all the Ivy League schools as well as UCLA. He loves research and people so he may be combining medicine and research as a dual career. Here’s wishing him and his future colleagues much success in their research and maybe one of us may have Samir as our doctor one day.

Famous People and Meniere’s Disease

People who have an invisible chronic illness deal with it in different ways. As we go about our day-to-day routines, we do our best to work around our illnesses. Some illnesses keep us home bound and unable to work while other illnesses affect us, but we are still able to have some sort of normalcy.

The Vestibular Disorders Association (VEDA) have had links to a few articles on their Facebook page about some people who have been diagnosed with Meniere’s Disease, how it’s affected their lives and what they have learned.

(Image via NASA)

In honour of May 5, 2011 being the 50th anniversary of Alan Shepard being the first American astronaut to fly in space, ABC News has the article “Top 5 Things You Didn’t Know About Alan Shepard, First American Astronaut in Space“. (If you want, skip to number 1.)

(Image via the Daily Mail)

Chris Packham, the star of the BBC show Springwatch, was interviewed for an article in the Daily Mail about living with Meniere’s Disease.

(Image via Zap2it.com)

And finally, the web site Zap2it.com has a short interview with actress Katie Leclerc who discusses learning that Meniere’s Disease is more common than what she realized.

Sodium Saturday

OK, I missed Food Porn Friday.  To make up for it, here’s a little information slide show about sodium from WebMD.com.

In my forever quest to lose weight, I started tracking the amount of sodium I consumed and started looking at labels when grocery shopping.  Sodium is an essential mineral.  Our bodies need it to maintain proper fluid balance, transmit nerve impulses and assist in muscle contraction and relaxation.  But, there is so much salt in our processed food!

I knew that sodium would be higher in TV dinners and soups, but I was surprised to see how high it is in tomato sauce!  And the slide show says medicines for headaches and heartburn can contain sodium.  I don’t know why it needs to be added to our pills but check your list of ingredients.

As you probably know, too much sodium raises the risk of high blood pressure and kidney disease.  And, even though I’ve been told that it’s not the cause of my balance issues, people with Meniere’s Disease have been told to lower their sodium intake as that may lower the frequency of vertigo episodes.

So, I try to find ways to reduce sodium from my diet.  I also check out different recipes for inspiration.  The Mayo Clinic has a list of low-sodium recipes.  Here’s two recipes from their website and the nutritional information for each recipe.

Happy cooking!

Crispy Potato Skins

Dietitian’s tip:
You can use any number of herbs or spices to season the potato skins. Try fresh basil, chives, dill, garlic, cayenne pepper, caraway seed, tarragon or thyme.
Serves 2

Ingredients

    2 medium russet potatoes
    Butter-flavored cooking spray
    1 tablespoon minced fresh rosemary
    1/8 teaspoon freshly ground black pepper

Directions

Preheat the oven to 375 F.

Wash the potatoes and pierce with a fork. Place in the oven and bake until the skins are crisp, about 1 hour.

Carefully — potatoes will be very hot — cut the potatoes in half and scoop out the pulp, leaving about 1/8 inch of the potato flesh attached to the skin. Save the pulp for another use.

Spray the inside of each potato skin with butter-flavored cooking spray. Press in the rosemary and pepper. Return the skins to the oven for 5 to 10 minutes. Serve immediately.

Nutritional Analysis

(per serving)

Serving size: 2 potato skin halves
Calories 114 Cholesterol 0 mg
Protein 2 g Sodium 12 mg
Carbohydrate 27 g Fiber 4 g
Total fat 0 g Potassium 332 mg
Saturated fat 0 g Calcium 20 mg
Monounsaturated fat 0 g

Stuffed Chicken Breasts

Dietitian’s tip:
To see if the chicken is cooked through to its center, cut into the thickest part. Any juices should run clear, and the meat should show no signs of uncooked or pink flesh. Using a food thermometer, check to make sure it registers 170 F.
Ingredients
Serves 4
    3 tablespoons seedless raisins
    1/2 cup chopped onion
    1/2 cup chopped celery
    1/4 teaspoon minced garlic
    1 bay leaf
    1 cup chopped and peeled apple
    2 tablespoons chopped water chestnuts
    4 large chicken breast halves, with the bones removed, each about 6 ounces
    2 tablespoons olive oil
    1 cup fat-free milk
    1 teaspoon curry powder
    2 tablespoons all-purpose (plain) flour
    1 lemon, cut into 4 wedges

Directions

Preheat the oven to 425 F. Lightly coat a baking dish with cooking spray.

In a small bowl, add the raisins and cover with warm water. Set aside and allow the raisins to swell.

Spray a large skillet with cooking spray. Add the onions, celery, garlic and bay leaf. Saute until the onions are translucent, about 5 minutes. Remove the bay leaf and add the apples. Cook for another 2 minutes, stirring occasionally.

Drain the raisins and pat with paper towels to remove the excess water. Add the raisins to the apple mixture. Stir in the water chestnuts and remove from heat. Let cool.

Loosen the skin on the chicken breasts. Place the apple-raisin mixture between the skin and breast. In another skillet, heat the olive oil over medium heat. Add the chicken breasts and cook until browned, about 5 minutes on each side.

Transfer the chicken breasts to the prepared baking dish. Cover and bake until a meat thermometer registers 170 F, or about 15 minutes. Remove from the oven.

While the chicken is baking, heat the milk, curry powder and flour over low heat in a saucepan. Stir until the mixture thickens, about 5 minutes. Pour the mixture over the chicken breasts. Cover and return the chicken to the oven and bake another 10 minutes.

Transfer the chicken breasts to warmed individual plates. Spoon the sauce from the baking pan over the chicken and garnish with lemon wedges.

Nutritional Analysis

(per serving)

Serving size: 1 stuffed chicken breast
Calories 371 Cholesterol 96 mg
Protein 36 g Sodium 122 mg
Carbohydrate 20 g Fiber 2 g
Total fat 16 g Potassium 505 mg
Saturated fat 4 g Calcium 91 mg
Monounsaturated fat 8 g

The ABCs of Disability – The Letter “S”

This Just In…

Having a chronic illness sucks!  With an “s”.

Having a chronic illness that is invisible really Sucks!

With a “bleeping” big, capital “S”.

I know I’m not saying anything that is earth-shattering.  But there are times when it needs to be said, even if it’s to ourselves.  Even when we’re having a good day.

Having an invisible, chronic illness is like living with a child who has temper tantrums.  Some days the child is really acting up, some days just lying low and a few precious days where everything is all right with the world.

For me, my main problem is vertigo. At 37 years of age I had to start learning to live with, and tolerate, the whims dictated by my inner problem child.   I don’t know when it will strike.  I can do very little to prevent it.

I feel like I’m in a strange, strange limbo.  I read other blogs where people have Meniere’s Disease and I am not on the same level as some of them.  I don’t get the vertigo so bad that I have to lay down for hours or days while throwing up.  My mother had Meniere’s Disease and she would suddenly yell to get the bucket because she would get dizzy and start to throw up.  She started leaving plastic bags in the glove compartment in case she would throw up.  Unless I’m feeling really drained, unbalanced or I’m sick, I can walk the couple of blocks to run an errand.

Yet, it’s bad enough that I can no longer work.  I have to keep my head looking forward as much as possible when I walk (which I now have to do at a slower pace) or sit.  I have to keep my head in my hand a lot of times to keep it still while I sit at my desk and lie down off and on during the day so I don’t get too tired or unbalanced.  I get most of my things online or get one of the people I live with to get me something.  I feel myself become unbalanced when the weather changes.  The weather!  Something else I can’t control.

For me, that’s one of the biggest problems which leads to some of the biggest fears that I’m learning to face.  I, like that temperamental child,  am out of control.   I can’t control my ears, can’t control my balance, have to plan to try to do things on certain days or, plan to try to not do too much if I know I have to go to an appointment.   Even though I try, many days I’m just not successful.   Can’t control this, can’t control that.  Can’t control my life.

Yoda was wrong when he said “Do or do not… there is no try”.   Some days, trying is the best we can do.