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Concussion Siscussion: Part 2

Concussion Siscussion: Part 2
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Every month, Spouses in Sports hosts a SiScussion on Twitter.  In December, SiS hosted a SiScussion titled, “Concussions: their effect on families”.  Response was so strong that we decided to continue the conversation in our January SiScussion.  This second round did not include any featured guests, but was more of an open forum.  The audience and contributors included SiSters from the NFL, MLB and NCAA, along with many doctors and concussion experts, blog writers and researchers around the topics of concussions, Traumatic Brain Injuries (TBI), and CTE.  Below is the rough Twitter transcript from the SiScussion.  Read on to hear experiences, find resources, and learn more about how much our fellow SiSters need the SiSterhood!  Make sure to read to the end too – important information is shared throughout the chat.

Welcome to our first #SiScussion of the New Year! Introduce yourself, tell us how your family’s life has been impacted by concussions.

Agency4StudentHealth @TheA4SHR
President of the Agency for Student Health Research, Charlie Wund. Former #ncaa #football, #lacrosse & #rugby athlete. #SiScussion

Agency4StudentHealth @TheA4SHR
Currently involved in #youthsports #injuryprevention and tracking of #concussion at the national level. #SiScussion

laurie robin @LaurieNavon
#SIScussion happy new year it’s Laurie Navon

Diane Mackey my husband died from CTE last Jan. Dr. McKee examend his brain

Diane Mackey ‏
   oh 2yrs in NFL,one year in Korea , 4 college, 4 High School

laurie robin @LaurieNavon
   my heart goes out to you @ your family

ConcussionConnection
  So terribly sorry to hear that. How long was your husband’s career?
Spouses In Sports
so sorry for your loss Diane. Please take comfort in knowing you have a support system like the
ConcussionConnection ‏
Lauren Long (co-founder) here. Truly admire each of you and what you all go through.
Brandi Winans@BrandiWinans
ConcussionConnection ‏
How many concussions did he have? Diagnosed and undiagnosed over the years?
Diane Mackey ‏

we never knew how many. I married him later. 1st diag was After sm. stroke then MRI VASCULAR LOOKED. BAD

ConcussionConnection ‏ So sorry to hear that. Know that we are here for you in whatever way you need, even if it’s telling his story.

laurie robin @LaurieNavon
@kmo50Moyer @ChicagoBears #SIScussion jim lost his balance last week split his head open & endured another concussion it’s been a hard week

Spouses In Sports ‏@LaurieNavon @kmo50Moyer @ChicagoBears oh no Laurie! So sorry to hear. What can our #SiSters do for you? #siscussion

ConcussionConnection ‏
@LaurieNavon @kmo50Moyer @ChicagoBears Sorry to hear this. How is he feeling? #siscussion

laurie robin @LaurieNavon
@kmo50Moyer @ChicagoBears #siscussion jim is doing ok a little sore last thing we needed was another #cocussion thx 4

ConcussionConnection ‏@LaurieNavon @kmo50Moyer @ChicagoBears Glad to hear he is doing okay. We wish him a speedy recovery. #SiScussion

Diane Mackey ‏    so sorry about his fall. Steal yourself as time goes on

karen moyer @kmo50Moyer
@SpousesInSports Those on #SiScussion share your personal story. We care! #SiSterhood

Brandi Winans ‏@BrandiWinans
@SpousesInSportsother sisters having troubles this week#dementia#AlS#surgeries

karen moyer @kmo50Moyer
Share what you’ve learned or are working on since last Brandi

Agency4StudentHealth @TheA4SHR
@SportsCAPP I know you’re traveling but hope you can join us. #SiScussion

Spouses In Sports ‏

Q1: Where have you found your greatest source of support? #siscussion

laurie robin @LaurieNavon
@kmo50Moyer @SpousesInSports @ChicagoBears @cavlisa @grantfuhr #siscussion I’ve learned to hve tuff skin unfortunately #blessed with friends

karen moyer @kmo50Moyer
Thanks for joining us Lisa!

Spouses In Sports ‏Thanks for jumping in ! Happy to have you

ConcussionConnection ‏@SpousesInSports Lauren Long (co-founder) here. Truly admire each of you and what you all go through. #siscussion

Agency4StudentHealth @TheA4SHR
Support systems r necessary every facet of life. Coaches, teachers, administrators, medical practitioners and of course #family.#SiScussion

Agency4StudentHealth @TheA4SHR

@concussconnect is doing great work to help #StudentAthletes by providing support systems in #Columbus. #SiScussion

ConcussionConnection ‏
Yes, as well as online support for anyone struggling with concussion recovery.

karen moyer @kmo50Moyer
There is a village of people that want to help all broken families affected by concussions! RT

laurie robin @LaurieNavon

@HiuppDiane @SpousesInSports @kmo50Moyer @ChicagoBears #SIScussion agreed U can’t always b the #rock

laurie robin @LaurieNavon
let the world no of our & what we do who we r

laurie robin @LaurieNavon
     nationally in the media

laurie robin @LaurieNavon
     wld Luv 2 tke this nationally reach more let them no us

laurie robin @LaurieNavon
     thx we need 2 work together fight the fight  

karen moyer @kmo50Moyer
We have each other’s backs!   

laurie robin @LaurieNavon
     it’s all about who u can cry to laugh with they get it

Diane Mackey ‏   meltdowns are must in order to go on

ConcussionConnection ‏
Acceptance is a very hard process and a tough one to face.

laurie robin @LaurieNavon
      a hard 1 to accept but we fight the fight

ConcussionConnection ‏     It’s an admirable fight and know it doesn’t go unnoticed.

ConcussionConnection ‏@kmo50Moyer @SpousesInSports We are here for you as well. We are support based and know how difficult recovery is. #siscussion

laurie robin @LaurieNavon
      I believe things happen 4 a reason we hve been a voice

ConcussionConnection ‏     Future generations will thank you for being a voice!

karen moyer @kmo50Moyer
    We Need U   

laurie robin @LaurieNavon
      trying making a difference raise awareness mke resources

karen moyer @kmo50Moyer
@cavlisa Does Grant have concussion issues?! #siscussion

Lisa Fuhr
thankfully not, all other parts such as knee replacement and other issues 🙁

karen moyer @kmo50Moyer
Sadly They fall apart the minute they walkoff field or ice! They give it 110% & we are left to struggle in retirement!
Lisa Fuhr
& his wife are our dear friends & we’ve experienced the pain he suffers
karen moyer @kmo50Moyer
   Happy U R there for them! Hard for fans to understand or ever appreciate!
laurie robin @LaurieNavon
    U r my Lisa my rock day in & day out uncondiotionaly
Lisa Fuhr
    It is so difficult to see him suffer when he has these episodes

Spouses In Sports ‏Q1a: Has there been any specific treatments that have seemed to help more than others? #siscussion

Diane Mackey ‏ someone asked about treatment. Since Charlie passed my mind went blank. The drugs helped him. Iwill find out.

Agency4StudentHealth @TheA4SHR
A1a: Treatment & recovery processes should be individualized. #everyoneisdifferent #SiScussion

Agency4StudentHealth @TheA4SHR
Has anyone modified diet to improve blood flow and promote regenerative process? #SiScussion

Jennifer Nunn @nunnsense4
@BrandiWinans @TheA4SHR @DocAmen Brandi you work with him re: concussions, right? #siscussion

Brandi Winans ‏@BrandiWinans
   yes

Agency4StudentHealth @TheA4SHR
We heard of his work a few years back and just made sense. Was hoping to get some personal accounts.

Brandi Winans ‏@BrandiWinans
@nunnsense4    Dr. ANN mckee #sports legacy institute #dr Robert Stern

Brandi Winans ‏@BrandiWinans
   #sportslegacyinstitute #bostonuniversity #siscussion

Jennifer Nunn @nunnsense4
     amazing work being done!  

Brandi Winans @BrandiWinans
   #prevention #better tackling tecniques #new techniques to detect #administered nasally

Brandi Winans@BrandiWinans
@TheA4SHR diets # yes # testing#

Spouses In Sports ‏
Great question from @TheA4SHR Has anyone modified diet to improve blood flow and promote regenerative process? #siscussion

karen moyer @kmo50Moyer
@SpousesInSports Join tonight’s #SiScussion #Concussions Anyone dating, married, divorced or widowed! We love U! #SiSterhood

Spouses In Sports ‏Q2: What would make it easier for the next generation of #SiS to get a handle on concussions and their effect on the family? #siscussion

ConcussionConnection ‏
Does anyone mind sharing any struggles they facing when it comes to your husband’s (or significant other) mental health? #SiScussion

Agency4StudentHealth @TheA4SHR
A2: #Education is a great start, but #transparency is a big part of effecting positive change. #knowthefacts #SiScussion

Agency4StudentHealth @TheA4SHR
A2 con’t: #Concussion ed needs to begin as early as possible & be engrained in our culture. From the classroom to the field. #SiScussion

Spouses In Sports ‏Just to remind everyone, if you aren’t already a member of http://t.co/l2uqbf9djJ, please check out the new format and sign up!

ConcussionConnection
@SpousesInSports Q2a: Changing the culture in football and other contact sports re: concussions is extremely important as well. #siscussion

The Concussion Blog @concussionblog
RT @TheA4SHR: A2: #Education is a great start, but #transparency is a big part of effecting positive change. #knowthefacts #SiScussion

Spouses In Sports ‏Appreciate the love @concussionblog! #siscussion

Spouses In Sports ‏Next question might cause a stir! Get ready! #siscussion

Spouses In Sports ‏Q3: What would you like to see the TEAMS and ORGANIZATIONS do to support you more? #siscussion

Agency4StudentHealth @TheA4SHR
A3: question w/ a question. What national organization should be responsible for providing #oversight of the teams? #SiScussion

ConcussionConnection ‏@TheA4SHR@SpousesInSports Tricky question right there..#siscussion

Spouses In Sports ‏Great follow up to question 4 coming up. No rush, keep the conversation flowing! #siscussion

Agency4StudentHealth @TheA4SHR
A3: Accountability would be a great start, but establishment of #concussion eval process and RTP protocols are within reason. #SiScussion

Spouses In Sports ‏Q4: What national organization should be responsible for providing #oversight of the teams? (h/t @TheA4SHR) #siscussion

Spouses In Sports ‏The question goes out to @NHL @nfl @MLB @NBA @NASCAR @MLS Are you supporting families thru concussion issues after playing days? #siscussion

Maryfrances Gainey @meg4334
@nunnsense4 @KeanaLee #SiSterhood #siscussion Sorry I am late to the discussion.

Maryfrances Gainey @meg4334
    There is no compensation for injuries.

Jennifer Nunn @nunnsense4
@meg4334 We are thrilled to have you join us again! #SiScussion

Agency4StudentHealth @TheA4SHR
A4: We’d like to see an independent organization focused on #SportsSafety providing oversight over the leagues & teams. #SiScussion

Spouses In Sports ‏@meg4334 @nunnsense4 @KeanaLee thanks for jumping in either way! #siscussion

Susan Johnson is this still going on?!? I had to get a yoga class in today after my crazy work day!

Spouses In Sports ‏
@suejohnson05 jump on in Susan! #SiScussion

Kimberly Archie @kimberlyarchie
RT @SpousesInSports: The question goes out to Are you supporting families thru concussion issues after playing days?

Susan Johnson ‏
Mets did an excellent job for us. More than Angels. NY contacted Boston University and sent in symptoms. #siscussion

Susan Johnson ‏ then created a plan, trainer even texted me personally about what vitamins (NSA approved) that I could pick up for Kyle. #siscussion

Susan Johnson 
 also talked to us about diet triggers and activities to improve mental functioning with hope of reducing concussion #siscussion

Susan Johnson ‏ migraines. We honestly have had best luck with essential oils. Please holler at me if this is of interest to anyone, they #siscussion

Susan Johnson ‏ if anyone is interested in treating migraines from concussions sigh essential oils please let me know! I would love to talk #siscussion

Spouses In Sports 
@suejohnson05 this is great to know that the @Mets did a good job at this. Everyone, lets give a round of applause to them! #SiScussion

Maryfrances Gainey @meg4334
@SpousesInSports @suejohnson05 #siscussion Do you have the name(s) of the doctor at Boston University? Juan’s headaches are getting worse.

ConcussionConnection ‏
@suejohnson05 @SpousesInSports Fantastic to hear!! #SiScussion

Susan Johnson ‏ I don’t! Our trainer contacted them and we weren’t involved in that process 🙁 I’m sorry #siscussion

ConcussionConnection ‏   Not sure about Boston doc, but I had great success with Dr. Jeffrey Kutcher at Michigan.

Jennifer Nunn @nunnsense4    would know. Brandi, what doctors at Boston U could Maryfrances contact?

Maryfrances Gainey @meg4334 Thanks. We will check that out.

Brandi Winans ‏@BrandiWinans    Dr.Robert Stern #tell him I referred you 

Maryfrances Gainey @meg4334
@BrandiWinans @SpousesInSports @nunnsense4 @suejohnson05 #siscussionWe will. Thanks. Juan’s eye doctor is in Boston.

ConcussionConnection   Also, please check out Dr. Joshua Cohen  

Maryfrances Gainey @meg4334     We will. Thanks. Juan’s eye doctor is in Boston.

Brandi Winans ‏@BrandiWinans
    #:-) :-#keep me posted#

Jennifer Nunn @nunnsense4
@suejohnson05 @SpousesInSports What essential oils are recommended? I have heard peppermint? #siscussion

Susan Johnson ‏  doTerra past tense and deep blue as well as peppermint massages on temples has been great 4 ua #siscussion

Susan Johnson ‏ the other things recommended: avoid gluten/known allergens and download to increase brain function.

Susan Johnson ‏     increases difficulty of challenges as you progress. And reasonably priced!

Susan Johnson ‏ concussion talk is on now on Twitter!

ConcussionConnection@nunnsense4 @suejohnson05 @SpousesInSports Would be interesting to see how effective oils are with treating PCS. #SiScussion

ConcussionConnection ‏   Any other holistic approaches that have proven effective?

ConcussionConnection ‏
     and do Yoga and it seems to be effective.

Agency4StudentHealth @TheA4SHR      Seems like positive blood flow is a common theme.

ConcussionConnection       Very much so

Kimberly Archie @kimberlyarchie       hyperbaric chamber and cranial sacral too

Agency4StudentHealth @TheA4SHR
Has anyone modified diet to improve blood flow and promote regenerative process?

Spouses In Sports 
Great question from Has anyone modified diet to improve blood flow and promote regenerative process?

Kimberly Archie@kimberlyarchie  I am a 36 yr brain injury survivor. This is my before and after changing diet.  #siscussion

Spouses In Sports   GREAT SUCCESS!

Maryfrances Gainey @meg4334
@SpousesInSports #siscussion Juan has responded well to MLD therapy.

Maryfrances Gainey @meg4334
      Juan still has vision problems and has no patience.

Susan Johnson ‏
     I’m sorry to hear this. I thinks specialist could help with vision stuff? #siscussion

ConcussionConnection     Sounds great! I went through about a year of cognitive rehab to help me.

Susan Johnson ‏     I know lack of patience for us stems from frustrations avoit forgetfulness

 ConcussionConnection     Yes, there are vision therapists who work with concussion patients and help.

Susan Johnson     BUT we’re all so different and symptomatically unique

 ConcussionConnection     Our co-founder, Samantha is and has been in vision therapy b/c of concussion

 Maryfrances Gainey @meg4334
    . Juan’s vision was damaged during an accident while playing.

 ConcussionConnection    May I ask what kind of problems he is experiencing?

 Maryfrances Gainey @meg4334
     Juan has severe headaches, memory issues, problems sleeping, etc.

 Maryfrances Gainey @meg4334
     Juan is legally blind in one eye from being hit by a foul ball.

 Spouses In Sports 
If you received helpful information tonight, please RT this! Lots of love to our #SiSters and the @Mets for their work #siscussion

 Agency4StudentHealth @TheA4SHR
Thanks 2 @SpousesInSports 4 hosting a great discussion & establishing #support 4 the families of those effected by #concussions. #SiScussion

Joshua Cohen, MD/MPH @MyHeadacheDoc
RT @concussconnect: @meg4334 @SpousesInSports @suejohnson05 Also, please check out Dr. Joshua Cohen @MyHeadacheDoc #SiScussion

Spouses In Sports @MyHeadacheDoc Thank you for the RT Dr. Cohen! Many good things said about you this evening! #siscussion

Spouses In Sports 
Bonus Question Q5: What kinds of compensatory techniques are used by former players dealing with concussion effects? #siscussion

Brandi Winans
  #depends on sport # length of time played # what years they played #siscussion

Spouses In Sports Shout out to , , , , and everyone else jumping on tonight!

Brain in Play We are happy to attend! Hope to join in on more events like this one

Spouses In Sports  second Tuesday of every month is ! Follow us and the site to keep up on the schedule!

Brain in Play Thank you we will put it on our calendar!

ConcussionConnection ‏@BrandiWinans@SpousesInSports What kind of techniques does your husband use to get through the tough foggy days of PCS? #SiScussion

Brandi Winans ‏ , is unique and different#what works one day doesn’t always work the next.stay positve #humor #love

ConcussionConnection ‏ Absolutely! Happy to hear that humor works from time to time 🙂

 laurie robin @LaurieNavon
@HiuppDiane @kmo50Moyer @SpousesInSports @ChicagoBears #siscussion great chat ladies Happy Healthy 2015

 ConcussionConnection ‏@SpousesInSports If anyone is interested in telling their husband’s story, we would love to set up a phone interview and talk. #siscussion

 ConcussionConnection ‏@SpousesInSports Great chat! Glad we could be apart of it this time around. Happy to help in anyway with spreading awareness! #siscussion

 Spouses In Sports Some states make progress on concussion guidelines: http://buff.ly/1AW3m91#SiScussion#Concussion#TBI#CTE

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