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The Good Thoughts and Prayers Needed Thread 2

Re: The Good Thoughts and Prayers Needed Thread 2

jen said:
thanks. plenty of worse concussion cases than mine, but having lots of post-concussion vision problems since June. no work, no driving, no reading, very little screen time, among other things. doing neurological therapy and saw an eye specialist. progress has been extremely slow until the last week or so, and even then, it feels like a million steps to go. as someone who is very active and independent, it's extremely tough and stressful.
Click to expand...

Is it affecting motor function or can you go outside, garden, do walks, etc?

Maybe you can use it as a blessing in a very good disguise and disconnect from screens, go outside, get sunshine, look at birds and rabbits or something? (Don't ask me. I spend as little time outside as I possibly can. It has bugs. And other people -- guh.)
 
Re: The Good Thoughts and Prayers Needed Thread 2

I suggested perhaps if brains had a "reset" button, it would be helpful. "Have you tried rebooting?" :p My brain needs to somehow figure out that yes, my eyes are screwed up, but they've always been that way and there's no need to panic and cause a headache. Now struggling through some incorrect reading glasses prescriptions.

The work disability paperwork alone is enough to give me a brain injury.
 
Re: The Good Thoughts and Prayers Needed Thread 2

Prayers/good vibes needed on a couple fronts:

1. When the calendar rolls to September, I'll be busy again. Classes start September 10 for me, I have speech therapy starting September 5, and I start an internship with Every Woman's Place (domestic violence, sexual assault, and human trafficking victims) starting September 16. With Every Woman's Place, I'm praying not only the internship goes well, but I make a difference there.

2. Praying for continued successful recovery on my right foot. I can put SOME weight on it as long as I'm wearing the boot, but it's like very short walks around my apartment and standing up. I would like to start physical therapy soon, as well as drive again.

3. Since my friend Jeanette died by suicide, and since surgery, I've felt especially vulnerable. And I thought I was a strong woman.
 
Re: The Good Thoughts and Prayers Needed Thread 2

Keep my family in your thoughts. My mom's younger sister/my godmother has had dementia for the past 9 years. I received an email last week saying that she is in hospice care. They have her heavily medicated so she does not feel any pain. It has been really hard watching her fade. She doesn't know her children or grandchildren. She thinks it is the 1950's and she is 5-7 years old.
 
Re: The Good Thoughts and Prayers Needed Thread 2

:( my friend's dad passed. She has been trying to get home for days but the hurricane made it impossible. She didn't make it here. She is trying for tonight's flight. Tough situation.
 
Re: The Good Thoughts and Prayers Needed Thread 2

No updates about my aunt. Unsure if this is filed under "no news is good news."
 
Re: The Good Thoughts and Prayers Needed Thread 2

so frustrated and discouraged. eye specialists look at my eyes and tell me how to "fix" them (even though my eyes did not change), without considering anything about the concussion. when I ask how this could change suddenly after a concussion, they have no answer, because they have no experience with concussions. orthoptist told me to wear the glasses for screens and reading for a month.. except they give me headaches, and when you get headaches post-concussion, doing anything else to cause a headache is just making everything worse, and then the headache never goes away. I asked my doctor for any other recommendations for someone that can help figure out what is going on and I have a call with a clinic in Chicago that may help. ugh. this can't be that hard.
 
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Re: The Good Thoughts and Prayers Needed Thread 2

jen said:
so frustrated and discouraged. eye specialists look at my eyes and tell me how to "fix" them (even though my eyes did not change), without considering anything about the concussion. when I ask how this could change suddenly after a concussion, they have no answer, because they have no experience with concussions. orthoptist told me to wear the glasses for screens and reading for a month.. except they give me headaches, and when you get headaches post-concussion, doing anything else to cause a headache is just making everything worse, and then the headache never goes away. I asked my doctor for any other recommendations for someone that can help figure out what is going on and I have a call with a clinic in Chicago that may help. ugh. this can't be that hard.
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So sorry to hear this. mr les was on the NCAA committee that dealt with concussions. They are a fickle diagnosis. Some people have horrible symptoms from the littlest injury and others have nothing happen after a catastrophic one.

We are very lucky to have one of the leading guys out here- Dr Cantu and BU which is cutting edge for TBI, concussions. Lots of resources here. I asked mr les. He said to see if Northwestern, Mayo or Cleveland Clinic they should have someone because of all the DI Ftb- someone that usually deals with the athletes. They are usually much more well versed in that then the general Neurologist. He said to also see if there are any neuropsychologists in the area. They would probably have a network to refer to. It is definitely a specialty unto itself. The science of it is a developing field and there are things that people doing it all the time are in the know about where the general neuro guy wouldn't be.

Adding my 2c to mr les- see if anyone around you is doing concussion research - they would have a network.
 
Re: The Good Thoughts and Prayers Needed Thread 2

leswp1 said:
So sorry to hear this. mr les was on the NCAA committee that dealt with concussions. They are a fickle diagnosis. Some people have horrible symptoms from the littlest injury and others have nothing happen after a catastrophic one.

We are very lucky to have one of the leading guys out here- Dr Cantu and BU which is cutting edge for TBI, concussions. Lots of resources here. I asked mr les. He said to see if Northwestern, Mayo or Cleveland Clinic they should have someone because of all the DI Ftb- someone that usually deals with the athletes. They are usually much more well versed in that then the general Neurologist. He said to also see if there are any neuropsychologists in the area. They would probably have a network to refer to. It is definitely a specialty unto itself. The science of it is a developing field and there are things that people doing it all the time are in the know about where the general neuro guy wouldn't be.

Adding my 2c to mr les- see if anyone around you is doing concussion research - they would have a network.
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thanks for the educated input. :) the dr. I have sees 5-6 concussions a week, so he is up on research and such, although he is not a neurologist (he had his residency in neurology or something... and he's supposedly part of a network, although he can't get me a referral to a neuro-opthamologist). There is a TBI clinic at Froedtert, so I will ask about that.. although the eye specialists I am seeing are affiliated with that hospital (but probably not the clinic itself, since they had no clue). I believe the clinic in Chicago is more cutting edge as far as research, testing and methods, so that may be my best bet.
 
Re: The Good Thoughts and Prayers Needed Thread 2

They refer to it as “practicing” medicine.... since there are no answers :)

Hang in there!
 
Re: The Good Thoughts and Prayers Needed Thread 2

Talked to the Chicago clinic (<a href="https://www.mindeye.com">Mind Eye Institute</a>) today and I am very impressed. Their end goal is to get the patient to a point where no intervention (glasses, etc) is required and get their life back (as opposed to the orthoptist who told me I would need blurry glasses for the rest of my life or require surgery). He said they hear that from LOTS of patients - they're told they'll never be able to do certain things again. Friend of a friend went there and said it was a miracle. I'm going to talk to my doctor before I schedule, but they can get me in as soon as Friday. They are pricey and they don't deal with insurance, but I don't much care at this point. It sounds too good to be true.
 
Re: The Good Thoughts and Prayers Needed Thread 2

jen said:
Talked to the Chicago clinic (<a href="https://www.mindeye.com">Mind Eye Institute</a>) today and I am very impressed. Their end goal is to get the patient to a point where no intervention (glasses, etc) is required and get their life back (as opposed to the orthoptist who told me I would need blurry glasses for the rest of my life or require surgery). He said they hear that from LOTS of patients - they're told they'll never be able to do certain things again. Friend of a friend went there and said it was a miracle. I'm going to talk to my doctor before I schedule, but they can get me in as soon as Friday. They are pricey and they don't deal with insurance, but I don't much care at this point. It sounds too good to be true.
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Good stuff.
Concussion treatment is really a developing science. As in new info comes out month to month. When I was in practice I was interested in it and the only way I could keep up was because mr les is so connected. All sorts of things with neurochemical pathways being disrupted, whether people have a predisposition to be affected more, various treatments- both medical and not and why they think some of it works with certain people and not others. I am not smart enough to decipher some of the things they are talking about at the cellular level. They finally have stopped trying to say a cookie cutter approach is how to deal with it. Each person is really different
 
Re: The Good Thoughts and Prayers Needed Thread 2

leswp1 said:
Good stuff.
Concussion treatment is really a developing science. As in new info comes out month to month. When I was in practice I was interested in it and the only way I could keep up was because mr les is so connected. All sorts of things with neurochemical pathways being disrupted, whether people have a predisposition to be affected more, various treatments- both medical and not and why they think some of it works with certain people and not others. I am not smart enough to decipher some of the things they are talking about at the cellular level. They finally have stopped trying to say a cookie cutter approach is how to deal with it. Each person is really different
Click to expand...

I've heard from several doctors that people with existing vision problems take longer to recover, and no one understands exactly why. I saw my doctor today (he is awesome), and will be seeing neuro opth and neuro psych, in addition to getting an MRI to figure out what is going on, and why this is so bad. He said vision problems can be kind of a black hole with concussion recovery, but he feels I am in touch with the correct people. He also said neuro psych issues are very common, especially the further you get away from the injury. Brains are funny. Just playing the waiting game for appointments (I suck at waiting) and dealing with migraines this week, so that's extra fun.

never in a billion years, when this happened in May, did I think I would still be out of work come October.
 
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Re: The Good Thoughts and Prayers Needed Thread 2

jen said:
I've heard from several doctors that people with existing vision problems take longer to recover, and no one understands exactly why. I saw my doctor today (he is awesome), and will be seeing neuro opth and neuro psych, in addition to getting an MRI to figure out what is going on, and why this is so bad. He said vision problems can be kind of a black hole with concussion recovery, but he feels I am in touch with the correct people. He also said neuro psych issues are very common, especially the further you get away from the injury. Brains are funny. Just playing the waiting game for appointments (I suck at waiting) and dealing with migraines this week, so that's extra fun.

never in a billion years, when this happened in May, did I think I would still be out of work come October.
Click to expand...

Glad you have a good 'pit crew'.

Went to a conference on Migraines a few yrs ago (when I was incapacitated with them) Few things I learned
-Light stimulus exacerbates them so wear green sunglasses even when inside (Green does something in the brain I forget what) for some people fluorescent lights trigger or worsten- they flicker at a high rate of speed which is stimulating
-fatigue makes them worse
-looking at anything on a screen is hyper stimulating because the pic is made of pixels which take a lot of brain work to decipher
-once you have one anything that is a stimulant might help for a bit but it will prolong the actual headache (so much for my coffee helping)
-if you don't take the med right when they start it is worse
-if you take stuff like ibuprofen once it gets going only supresses it and when it wears off the HA comes back in spades.
-sleep deprivation makes it worse
-all stimulus- touch, light, sound, etc makes things worse.
-driving or being driven is a trigger- lots of stimulus
- the most common symptom of migraine is not headache but is confusion. Even after the headache resolves the fuzzy head can persist for awhile which is frustrating as hell.

I don't have the headaches as much anymore but I still have the stupid/fuzzy head thing and it is irritating as hell
 
Re: The Good Thoughts and Prayers Needed Thread 2

I couldn't really find a better place to share this but it seems to fit here.

I'd appreciate it if people would take the time to read this and share it around more...please donate if you can too.

Huskies, Let's Talk about the difficult topic of Depression and Suicide
https://techhockeyguide.com/2019/09/30/not-so-old-dog-huskies-lets-talk/

For those of you that don't know, a member of Mitch's Misfits died earlier this summer. He committed suicide but his family/culture made it difficult to talk about him more directly so the above is what we decided to do.
 
Re: The Good Thoughts and Prayers Needed Thread 2

I'm worried about one of my best friends. In June, her foster sister and one of my good friends died by suicide. Since then, she's been running herself ragged trying to take care of everything... and the last time I saw her, she looked like she needed 14 hours of sleep or a 4XL coffee. Pray she gets the rest she needs.
 
Re: The Good Thoughts and Prayers Needed Thread 2

* Dementia! :mad:

My aunt died yesterday after a 5 year battle with the horrible disease.
 
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