Huey Lewis and his battle with Meniere's

I have never thought of suicide just not me. However I so appreciate how he must feel about not being able to do something he loves .. music. Right now I am trying to listen to Christmas songs and it's just not a good day...I will try again tomorrow. Thanks Cheryl for posting this. Great reminder that things could be worse.

 

That feeling is understandable. I have wondered what percentage of Meniere's patients experience feeling suicidal as opposed to the percentage of the general population having suicidal feelings. I'd guess it's a lot higher percentage among those with Meniere's.

 

I am glad Huey is being so open about the emotional/mental damage of this disease. Of all the celebrities with the disease...he has been the most outspoken and I think that is great.

I hope he continues to stay active on the topic. He is doing us all a great service by simply doing these interviews.

 

I hope so too. There needs to be more awareness of this condition, and especially of the psychological and emotional toll it takes on those who suffer from it.

 

Did anyone hear the interview with Huey Lewis on NPR's All Things Considered tonight?

 

This horrible disease derails careers and diminishes the quality of life, yet, until very recently there has been no effort made to find a treatment or a cure. No one has cared. So many strides have been made in treating so many conditions, but for this--nothing. It makes me both sick and very angry.

 

Meniere’s is so unpredictable with each individual- yes - saw Huey Lewis interviews. Life can change in a minute-

 

I have to say that I couldn't disagree more with Huey's statement about "getting used to it". I have dealt with this for decades. I have never "gotten used to it" and never will. In fact, the longer I have it, and the older I get, the more difficult it is to cope.

 

I had to play one of his songs/march behind him in a parade when I was a teen. Oh, bitter irony. None of us would wish this on anyone. His candor on his difficulty with menieres is refreshing, however, there are other famous figures(Kristen Chenowith is first to mind, by no means alone) who minimize the impact. It may be trivial in their lives, but not once have any of them ever said, “Ménière’s can’t kill you, but side-effects like drop attacks most certainly can!” If they did, think about how much help, attention, and RESEARCH this illness could receive?!

I’d LOVE to bring all of us together during one of their interviews, when they say something like, “ it’s no big deal, I got a little dizzy, but a low sodium diet fixed everything!” Just to give them the stink eye.

I’m glad he was more candid than most, too bad people don’t realize this illness is inadvertently dangerous:
Falls, walking funny/into walls. ::rolling up sleeves looking at recent bruises::

 

It makes me very angry when someone, famous or otherwise, minimizes this disease and its impact, because that is simply not the truth. I don't know if they are outright lying, or are in some serious denial. This disease doesn't kill us or shorten our lives (although the effects of it possibly could do that!) but it does diminish the quality of life, sometimes very greatly. That needs to be acknowledged if this disease is ever to be taken seriously.

 

Anytime I hear or read that someone who supposedly has Meniere's is minimizing it or saying that it is something one can get used to, my thought is that they are either outright lying, in very deep denial, or don't have the disease at all. They need good kick in head for saying that. It doesn't help the cause for bringing public attention to this nasty disease and what it is and does, and how futile treatment often is.

 

Hey Cheryl!
Better question, do we WANT to know what she THINKS she is talking about? I don't think I'm capable of understanding the depth of such genius, so I better not try. Must preserve what humble brain cells I still own.

 

I think a Ménière's diagnosis is given too broadly. I was diagnosed with it even though I hadn't experienced any dizziness at the time. ("You will", I was told). If you are told that you have Ménière's, but don't suffer from vertigo and nausea, I would say that it is life affecting rather than life changing. For those who rely on their hearing to work, it's no picnic. But becoming violently ill at random times? That's another level entirely. I haven't heard either Huey Lewis or Kristin Chenoweth talk about having either of those two symptoms.

 

The vertigo/dizziness/violent illness makes things exponentially worse. But that is not to say that the other symptoms aren't debilitating enough to diminish the quality of one's life and prevent them from living a normal life. The idea that just because someone isn't experiencing vertigo/dizziness, that things aren't "that bad" is just not true.

 

No argument here, believe me. I didn't read the article (shame on me), but I have now - and I see that she does experience vertigo. In my opinion, she didn't seem to be minimizing it; she explained what she was going through, then mentioned a procedure that could help her vertigo - but would also leave her deaf. She wasn't whining and moaning about it, which is admirable and also probably necessary. Complaining too much could cost her work. I wish I could complain less about it. It's a bit of a tightrope act; complain too little and people dismiss it, complain too much and you wear thin. In my case, barfing and swooning and lying on the floor in front of people weirded them out or made them think that I'd been drinking.

 

I try to avoid talking about it to most people, but at times it's a necessity to do so--like when I've had to bail on plans yet again at the last minute. I hate being a flake and feel like I owe an explanation when I come across as one, that it isn't my fault. I just tell it like it is.

 

Yep I’m there with you. I have had vertigo and OMFG get me off the roller coaster ride. Whoa it’s been a while since I have had it I hate the feeling when he had started again and came back it threw me off the bed on the hard floor. I don’t wanna sleep alone because I’m scared to death of hurting myself because it is so violent