Sunday, November 14, 2010

Your children and Meniere’s disease

A very common problem of Meniere’s disease patients is the lack of understanding that most folks have about this disorder. While it is getting a little more coverage in the press because of the recent developments regarding an inner ear device that hopefully will control vertigo, it is still difficult to for some people to understand what the sickness is all about. For some reason that can’t seem to see how Meniere’s disease limits your activities and how it plays havoc on your emotions. I have been lucky because my wife has seen firsthand what Meniere’s can do to a person physically and mentally. She is very supportive. I also have a 9 year old son who sometimes understands and sometimes he doesn’t. Children and Meniere’s disease can create a situation that must be carefully handled.


I have to admit that I sometimes get frustrated with my son when he wants me to do certain activities with him, like go on amusement rides, especially roller coasters. I wouldn’t even want to watch a roller coaster let alone ride one. But he still gets to go on the rides because his mother will go with. The same goes for water park rides, once again I can’t do that but my wife can. My son enjoys his mother’s company but I know that he wishes that I could do things like that with him, and I do to. He constantly asks me if “I wasn’t sick” would I go on the ride with him. I guess he sometimes wonders if it isn’t just my illness that holds back my participation. And that hurts.

With time my son will have a better understanding of what I am going through.



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8 comments:

  1. hey david
    i have the same fear with my kids. i feel like i'm always having to back out of doing things with them. i'm always having to go lay down or tell them "i can't." it really hurts. they are 5 and 7 and when they got out for school this summer, they expected we would be going to do all these crazy, fun things. well, one this disease just doesn't allow such freedoms and two, i had my 1st gent injection two weeks prior. so we had to sit down and have a talk. i don't know how much they really understood though. it may be one of the most hurtful aspects of this disease is how much it takes away from all the things you want to do with your kids.

    fortunately, my husband does step in to be the "fun" parent and do all the things i can't. i do try to read with them and help with homework, watch movies, things like that. on good days, we go to the park, go walking or hiking. hopefully, when these gents are behind me, i'll be able to do more.
    ~nicki

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  2. hi nicki,
    I couldn't agree with you more, this disease does take its toll on your relationship with your kids.
    In our family I am also the homework parent and the one that does the sedentary activitives.
    Hopefully some day things will change and I will be more active. at least I hope.
    I hope you are doing well.
    David

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  3. David:

    I am the same way, I do all the sitting activities.
    Puzzles, reading, baths and storytelling.
    Hope is a big thing with this disease.
    Tom

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  4. David-
    I am a woman with A-typical Meniere's Bi-lateral...so I get the fullness of the ears, ear ringing, clouded hearing. I am more effected by the cold than the warm. I was diagnosed with MD over 15 years ago with my first full episode ...then it went Dormant, no issues!!! Then two years ago I started having really bad ear pain I thought I had a double ear infection. I went to the doctor seeking antibiotics and he told me there was no infection and he sent me to an ENT. I was tested and MRI-ed and guess what was back with a vengeance...with hearing loss. The ENT said because I have little to no Vertigo I have become A-typical but now also bi-lateral. I am over-weight have been for 20 years, but no issues with Hypertension. My normal diet has always been pretty low salt, that is how I cook (admittedly - I do binge on salty things when close to my monthly cycle, but it does not seem to bother my MD). We are an active family, I love to swim and hike and play in the snow I just have to make sure my ears are always warm. As with anything...I believe you can do anything you don't have to be sedentary unless you want to be a victim to your disease. My mother-in-law has Chrohn's Disease, she is very active...if she wanted to she could be a prisoner to her bathroom but she chooses not to be... I used to be a Radiation Therapist and treat many cancer patients. I always told my patients the cancer is not all you it is a part of you and you choose to let it manipulate what and where go or do. Move forward...wear it as a badge of honor not heavy armor!
    I take a triamterene once a day only when I am having the fullness and hearing issues like now...it is winter and I unfortunately went for a walk and didn't realize it was too cold for my ears. I have lost about 30% of my hearing in the right ear and about 25% of hearing in my left. I am slowly going deaf. My son and husband are taking it in stride, they hate having to repeat themselves but you do what you have to do and they are learning to have me look at them when they talk so I can read their lips...I find it helps. I do find that I speaking either too loud or too soft in some situations.
    -Audrey in Sacramento, CA

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  5. Hi Audrey,
    That is really fascinating about having meniere’s without the vertigo, I haven’t heard of many that have that. It doesn’t look like the low sodium diet has helped much, (it didn’t help me either)
    You sound like you have great way of looking at challenges in life and that is so very important. Don’t let the illnesses overwhelm you! It also helps to have a family that is understanding and willing to work with you on such issues as hearing (a problem of mine too!)

    Good luck and stay in touch and let us know how you are doing
    David

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  6. I am a mother of 2 kids and MM has taken a HUGE toll on my kids lives. My 8 year old son is always depressed because I cannot do much with him. I feel so bad, and people just don't understand how the "dizzies" take over our lives. I cannot drive for over 30 minutes, just going to parent teacher meetings are hard on me. I used to be an athlete, and now I can barely kick a soccer ball with my kids. Hope and pray...

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  7. you are not alone, many of us with children have the same issues and they definitely difficult to handle.
    Stay in touch and let us know how you are doing
    thanks
    David

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