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  1. #1
    Eruption
    Join Date
    11.13.03
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    44
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    Higher in the Sierras
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    880
    Favorite VH Album

    Currently: 1984
    Favorite VH Song

    Currently: Panama
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    05.30.17 @ 09:20 PM
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    Donor

    Default My wife and her condition...just need a place to get it out

    Hey everyone,

    I know most of you don't know me very well. I don't post here much even though I've been a member since 2003. I just come here and read a lot and share the love of VH with all of you. I don't get personal too much because it's just not me. But...my wife and I just had a life changing experience and it's all so new. I think I just need a place to get it out. So here goes:

    My wife was diagnosed with Cervical Dystonia this past week. It had been coming on for the last month or so. It's a horrible neurological disorder that has no cure. Something in her brain is misfiring and telling the large muscle on the right of her neck to spasm and turn her head to the left. She has trouble moving it back to center and it doesn't stay for very long. It came on lightly about a month ago and has gotten worse. She is one of the lucky few that doesn't have pain but the neck muscles are VERY tired and sore by the end of the day. One of the best treatments for it is botox shots in the muscle every 3 months. She had her first round a few days ago and they don't seem to work yet. It could take up to 3 weeks for them to work and then they wear off usually in 8 weeks. You have to wait 3 months for your next round of shots or else your body could build up a tolerance if you do it too soon. She'll need them for the rest of her life. If she's lucky, she could be in the 5% of people with this rare condition that have it go away completely and never come back. 30% of people with this have it go away but it comes back a few years later and stays. We're just taking it day-by-day at this point. We have also looked into a clinic in New Mexico that specializes in this with holistic approaches such as specific exercises, specialized vitamins, a specific diet, and calming practices. It flares badly with stress and my wife just got a new job before it came on. It's kind of a perfect shit storm. We have 3 and 5 year old daughters and they seem to not really notice what is going on, which is great. We want it that way. My wife is Italian and kind of a bad-ass so I know she's strong enough to handle it. I'm doing everything in my power to make sure she has good days, every day. Dishes, laundry, taking the kids to the dentist, vacuuming, dusting, etc. have all become my responsibility by choice. I want her to relax her neck as much as possible. We're looking into disability because she may have to quit her job. She can barely make it through the work day. I cry for her in private because I can't do anything else for her but that. I wish I could take it away from her but I can't. We'll continue to fight through and we'll learn more about it as the years go on. Anyway, just needed a place to get this out. Thanks for listening. I don't talk to many people about this because it's so new.

    evans5150
    Thunder Mountain Brewing Company
    Owner and Brewmaster

    Bottled: 2010 Imperial Bastard Stout (9.5% ABV)
    Bottled: 2011 Thunder Mountain Pale Ale (5.5% ABV)
    Fermenting: 2011 Thunder Mountain Irrish Ale (4.9% ABV)


    "I'm just a normal jerk who happens to make music. As long as my brain and fingers work, I'm cool." -Eddie Van Halen, 1996

  2. #2
    Sinner's Swing! mikehunt5150's Avatar
    Join Date
    08.19.10
    Location
    baltimore
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    Favorite VH Album

    all
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    simple rhyme
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    12.09.17 @ 08:37 PM
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    Default

    You and your wife are in my families prayers . God bless
    WHAT IS UNDERSTOOD NEED NOT BE DISCUSSED

  3. #3
    Eruption
    Join Date
    12.06.01
    Location
    Arizona
    Posts
    875
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    I have to pick?
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    10.05.17 @ 11:44 AM
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    Default

    I don't know how many people around here feel about marijuana, but:

    http://www.mcsocal.com/blog/dystonia...nnabis-therapy
    Your favorite band sucks.

  4. #4
    carpe damn diem billy007's Avatar
    Join Date
    04.19.00
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    54
    Location
    On the wild card line...
    Posts
    28,662
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    "Dance The Night Away"
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    12.10.17 @ 07:37 PM
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    Liked 1,340 Times in 919 Posts

    Default

    sorry to hear about your wife's and your situation. stay strong.

  5. #5
    Baluchitherium
    Join Date
    09.11.06
    Age
    41
    Location
    Leicestershire, England
    Posts
    4,484
    Favorite VH Album

    VH1, VHII or Fair Warning
    Favorite VH Song

    They're all great!
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    04.02.15 @ 07:26 AM
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    Donor

    Default

    Sorry to hear of your wife's condition. It must be tough for both of you to go through this kind of thing, especially with two young children to take care of as well.
    I'd definitely consider a Hollistic approach. I suffer with arthritis in my left hand, Doctor's basically told me to stop playing guitar and take pain meds. I went to see a Hollistic Threapist who gave me some simple oils that she had combined and told me to massage the area twice a day. After three weeks the pain was down to virtually nothing and now, almost a year later, I'm pretty much pain free and I still have the same movement in my hand that I had before the Arthritis. Obviously this may not work for everyone but surely its worth a shot. I hope something comes along that helps mate.
    http://www.facebook.com/Tommywho5150

    And with that I'm off to the kitchen to make myself a lesbian omelette...LLFHS in response to one of Graeme's post's


    "The anal beads may have scarred SNIC for life. That guy is tough as fucking nails!! No normal guy could take anal beads to the head and survive! "...OLO on SNIC's near death experience at TLW

    "I'm a 45-year-old man, and I still like to wear a thong or a speedo when I go swimming.
    Not because I have a great body, it's just an easy way to make sure I have the hotel swimming pool all to myself."...Bullwinkle for quite obvious reasons!

    "Dude, the cashier gave me the creepiest sneer when he rang up my unmentionables!"...Sassy Lassy during a Facebook conversation!

  6. #6
    Little Dreamer REDVANHALEN's Avatar
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    12.04.12 @ 08:13 PM
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    Default

    Sorry about your wife, I hope you both can stay positive and something good happens for her. I have been a member that rarely posts. I love Van Halen and check this site out daily. It is part of my routine and I enjoy and feel like most everyone on here are friends that never meet.

  7. #7
    Atomic Punk MF5150's Avatar
    Join Date
    06.05.04
    Age
    29
    Location
    Toronto
    Posts
    16,323
    Favorite VH Album

    Balance
    Favorite VH Song

    Seventh Seal/Me Wise Magic
    Last Online

    12.10.17 @ 12:20 PM
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    295
    Liked 411 Times in 246 Posts

    Default

    So sorry to hear about this, evans. Everything will work out, I am sure. Stay positive. Stay strong.
    My man, when you are fantasizing, don't go for attainable, you can get attainable at the local Applebee's. - Dave's Dreidel

  8. #8
    Hang 'Em High Hurricane Halen's Avatar
    Join Date
    07.17.03
    Age
    49
    Location
    Shreveport Louisiana
    Posts
    6,600
    Favorite VH Album

    All of them
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    All of them
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    12.09.17 @ 07:27 AM
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    Default

    Hey bro, let me say this.

    1st, sorry to hear what you guys are struggling thru. But, you are doing everything right in being a base of support for her and your kids. Keep doing what you're doing in helping reduce the level of stress in her life. I know she is thankful for you and all that you are doing for her. I know she appreciates it and your actions alone show her that she isn't alone in this battle.

    2nd, keep researching. I've never heard of Cervical Dystonia and I believe if you have found a clinic in New Mexico that deals with this, keep that line of communication open with them. I hope you guys get the chance to explore the options of getting to this place, that is if the shots and other thearpy don't seem to do the trick. Also, I really hope that you guys have insurance that will help ease the cost of these expensive procedures that you guys now face. As you know, nothing medical is cheap anymore. Dig for answers, because they're out there. Look to see if there is a national support group or internet forum you guys can join and talk with others who have dealt with this same problem. There might be some good answers for you guys, there.

    3rd. When the time is right and you feel that your children are old enough to understand, involve them. They need to know, and have a right to know. I believe involving them now with easy communication will ease them into the problem without a whole lot of shock. Parents being sick, or having a medical problem freaks kids out, bad, esp the older they get. But, if you guys explain what's going on, on a level they can understand, you can reduce the new stress that is placed on them. But, only cross that road when you and your wife are ready to include them. Kids want to do their part in the recovery process and I think you'll be suprised on what they come up with. Kids have a unique way of making you smile when a parent isn't feeling well!

    I wish you guys the very best of luck. As you know, we tend to take care of our own in the VH Links, if possible. I think its great you felt comfortable to share this with us. Many here will help with advice or whatever, anything to help you. That's the beauty of this site sometimes.
    Keep the thread updated on her progress. And if ya need to vent, just do it! It's a relief on your soul!

    HH<----Thinks its cool that ya cried in private about her. NO SHAME IN THAT! That is a sign of a strong person!---------
    [SIGPIC][/SIGPIC]
    VH LINKS Resident Paramedic/Firefighter
    #officialhashtaghater
    Copyright holder of all things, "<-----------------"

    UC<------Goal in life to be included in an HH sig-----

  9. #9
    Hot For Teacher Clance65's Avatar
    Join Date
    01.13.12
    Location
    Portland,Or
    Posts
    247
    Favorite VH Album

    Van Halen 11
    Favorite VH Song

    Beautiful Girls
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    07.30.15 @ 08:47 AM
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    Default

    You, your wife and children are in my thoughts and prayers. Good vibes back to you bro. I'm glad that you were able to find some type of outlet for what's going on with you, so important not to go at it alone. You're a good dude, and are doing all that you can. PM if you need to talk more, keep reaching out. Cliche and nonsense to some, but "let go and let God", and if that's not for you, just keep letting out what you feel to others you trust. Have the best day you can bro!


    Clanceman
    Clanceman

  10. #10
    Eruption
    Join Date
    11.13.03
    Age
    44
    Location
    Higher in the Sierras
    Posts
    880
    Favorite VH Album

    Currently: 1984
    Favorite VH Song

    Currently: Panama
    Last Online

    05.30.17 @ 09:20 PM
    Likes
    6
    Liked 26 Times in 14 Posts


    Donor

    Default

    Thank you all for the well wishes and words of encouragement. You are ALL metal and I appreciate it!!

    My wife and I have been married for 10 years and have a very strong relationship. This will do nothing but push us even closer. She's my world and I respect her dearly. We have plans to exhaust all resources and then find some more to beat the shit out of. She's 35 years old and with that we have hopes something will come along in her lifetime that will be another source of treatment or even cure. She has joined a few online message boards that deal with this and unfortunately there are no in-person support groups in our area. Apparently only less than 300,000 people in the United States have this. There are movement disorder specialists in Sacramento, Las Vegas, and the Bay Area. We live in Reno so these aren't too far for us to travel.

    As for the kids, I wholeheartedly agree. They will learn in due time all about this and we know for a fact it will make them very tolerant people growing up. They are loving girls and love mommy to death already. That is a great source of distraction for her and if she has to become a stay at home mom again because of this we know it is only a blessing in disguise. We have God in our lives and know we are safe with the decisions we make for her. I always tell my wife that SHE doesn't have this disorder, WE do. WE will do everything together. We have great insurance (we both work for the county) so the botox shots every 3 months is $75. Not terrible. We signed up for a pre-tax benefit debit card last year and have been using that for copays. It adds up but we're frugal to begin with so the money is there right now. Someday it may not be so we're doing everything we can to save up. The clinic in New Mexico has a "long-distance" program available that is half the price and we may be able to get some of it covered by insurance. We will start that this week.

    Thanks again to everyone for everything you have typed, be it advice, thoughts, prayers, etc. It really means a lot to me.

    I do have my outlets during this. The new VH disc couldn't have come at a better time in my life. When I need a release I crank it and get lost in the music. The drive to and from work is laced with VH or Frank Sinatra. My two favorites. (I know...weird combo!) I am also a PS3 guy and I'm highly addicted to FIFA12 and MLB 12 The Show comes out this week. When all 3 of my girls are napping on the weekend, I get 2 hours to put my headphones on and PLAY, PLAY, PLAY!!! It's a great release and recharges me for this lifelong battle!!
    Thunder Mountain Brewing Company
    Owner and Brewmaster

    Bottled: 2010 Imperial Bastard Stout (9.5% ABV)
    Bottled: 2011 Thunder Mountain Pale Ale (5.5% ABV)
    Fermenting: 2011 Thunder Mountain Irrish Ale (4.9% ABV)


    "I'm just a normal jerk who happens to make music. As long as my brain and fingers work, I'm cool." -Eddie Van Halen, 1996

  11. #11
    On Fire Genghis_John's Avatar
    Join Date
    03.07.03
    Age
    49
    Location
    Ohio
    Posts
    336
    Favorite VH Album

    Fair Warning
    Favorite VH Song

    Mean Street
    Last Online

    08.22.16 @ 01:22 PM
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    4
    Liked 14 Times in 6 Posts

    Default

    Hang in there man. I think its great that you are trying your best to take care of your family. That said, if you can, make sure to carve out a little bit of time for yourself. You have to take care of yourself. A little exercise, play a game, listen to VH, take the kids to McDonalds, etc. Something fun.

    I'll keep you in my prayers.

    Edit: Ha - you beat me to it! Glad to see you finding an outlet.
    "Everything comes to me while I'm sitting on the pot." - EVH

  12. #12
    Hot For Teacher Clance65's Avatar
    Join Date
    01.13.12
    Location
    Portland,Or
    Posts
    247
    Favorite VH Album

    Van Halen 11
    Favorite VH Song

    Beautiful Girls
    Last Online

    07.30.15 @ 08:47 AM
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    Default

    Quote Originally Posted by evans5150 View Post
    Thank you all for the well wishes and words of encouragement. You are ALL metal and I appreciate it!!

    My wife and I have been married for 10 years and have a very strong relationship. This will do nothing but push us even closer. She's my world and I respect her dearly. We have plans to exhaust all resources and then find some more to beat the shit out of. She's 35 years old and with that we have hopes something will come along in her lifetime that will be another source of treatment or even cure. She has joined a few online message boards that deal with this and unfortunately there are no in-person support groups in our area. Apparently only less than 300,000 people in the United States have this. There are movement disorder specialists in Sacramento, Las Vegas, and the Bay Area. We live in Reno so these aren't too far for us to travel.

    As for the kids, I wholeheartedly agree. They will learn in due time all about this and we know for a fact it will make them very tolerant people growing up. They are loving girls and love mommy to death already. That is a great source of distraction for her and if she has to become a stay at home mom again because of this we know it is only a blessing in disguise. We have God in our lives and know we are safe with the decisions we make for her. I always tell my wife that SHE doesn't have this disorder, WE do. WE will do everything together. We have great insurance (we both work for the county) so the botox shots every 3 months is $75. Not terrible. We signed up for a pre-tax benefit debit card last year and have been using that for copays. It adds up but we're frugal to begin with so the money is there right now. Someday it may not be so we're doing everything we can to save up. The clinic in New Mexico has a "long-distance" program available that is half the price and we may be able to get some of it covered by insurance. We will start that this week.

    Thanks again to everyone for everything you have typed, be it advice, thoughts, prayers, etc. It really means a lot to me.

    I do have my outlets during this. The new VH disc couldn't have come at a better time in my life. When I need a release I crank it and get lost in the music. The drive to and from work is laced with VH or Frank Sinatra. My two favorites. (I know...weird combo!) I am also a PS3 guy and I'm highly addicted to FIFA12 and MLB 12 The Show comes out this week. When all 3 of my girls are napping on the weekend, I get 2 hours to put my headphones on and PLAY, PLAY, PLAY!!! It's a great release and recharges me for this lifelong battle!!
    Awesome stuff man! I'll have to try the Sinatra/VH combo sometime, lol! Funny, but I bet DLR would get it! My dads hero, and funny as I get older, my Dads heros are special memories nowadays ( I own Sinatra Live, Sands, I think?, with Count Basie)


    Clanceman
    Clanceman

  13. #13
    Hot For Teacher
    Join Date
    10.11.10
    Location
    Virginia
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    230
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    Changes Every Hour
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    Changes Every Minute
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    09.30.14 @ 03:16 PM
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    Default

    Goes to show that testicular fortitude comes in all shapes and sizes....Not just your favorite quarterback or guitar hero

    Takes a real man to deal with your situation. My thoughts and prayers to you and your family.
    Last edited by r8ter316; 03.04.12 at 10:53 AM.
    [SIGPIC][/SIGPIC]

  14. #14
    Summer Nights in Cabo SNIC's Avatar
    Join Date
    05.21.04
    Age
    48
    Location
    San Antonio, Texas
    Posts
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    5150
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    Summer Nights, Cabo Wabo
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    10.19.17 @ 06:44 PM
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    Liked 55 Times in 21 Posts


    Premium Member

    Donor

    Default

    My heart, thoughts, and prayers go out to you.
    Artists I Have Seen: 1D, 38 Special, Aerosmith, Alabama, Bad Company, Bad English, Billy Squire, Bob Seger, Bon Jovi, Boston, BTO, Cheap Trick, Chicago, Chickenfoot, Cinderella, Daughtry, Dave Matthews Band, Default, Def Leppard, Dio, Dokken, Drowning Pool, Eagles, Earth Wind & Fire, Eddie Money, Eric Clapton, Farenheit, Fleetwood Mac, Foreigner, Garth Brooks, George Strait, Glass Tiger, Heart, Huey Lewis and the News, Jackson Browne, Jimmy Buffett, Joan Jett and the Blackhearts, Joe Bonamassa, John Mellencamp, Journey, Keel, Kingdom Come, Kings X, KISS, Kool and the Gang, Krokus, Lionel Richie, Little River Band, Lou Gramm, Loverboy, Los Lonely Boys, Lynyrd Skynyrd, Metallica, Michael Bolton, Nickelback, Night Ranger, Paul Stanley, Peter Frampton, Pink Floyd, Poison, Red Rider, REO Speedwagon, Santana, Sammy Hagar, Shinedown, Steely Dan, Steve Miller Band, Styx, Ted Nugent, Tesla, The 1975, The Black Crowes, The Roots, The Wallflowers, U2, Van Halen, Whitesnake, Zac Brown Band, ZZ Top

  15. #15
    Atomic Punk stilleddiesangel's Avatar
    Join Date
    03.30.04
    Location
    A Brit in Texas
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    Have a soft spot for F*U*C*K
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    Unchained/Mine All Mine
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    08.25.17 @ 05:45 PM
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    Liked 30 Times in 11 Posts


    Donor

    Default

    So sorry to hear of your wife's condition but wow, what a great husband she has!! Your love and strength will get her thru this and she is bless to have you and you to have her.
    ****Texas - Home Of My Heart****

    [SIGPIC][/SIGPIC]

 

 

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