Things That Are Bothering You, Got You All Hibbeldy-Jibbeldy, or just downright pissed, RIGHT NOW!

[HORNS]

Gotcha. Same here.

As for kids and the potential for treatments/breakthroughs, it's definitely possible. But I don't know if I could live with the guilt, regardless, especially because if I do have kids, I'd probably want them before I'm 40, or only 6 years from now (and damn, even thinking about having kids at 40 sounds crazy old to me). The way ET presents itself is so highly variable and there are countless stories of people with it going on to have kids, only to see their children, aged as young as 3-6, start showing symptoms. It's heartbreaking. I couldn't live with the guilt of knowing I gave them that.

So I'd want to see a major breakthrough in the next decade to even feel comfortable entertaining the thought of kids.

Then at that point you'd be the same age as me when my son was born. You have plenty of time.

 

[edinatlanta]

I am an incredibly vivid, lucid dreamer. I have a busy work week this week and just about every 30 minutes last night, dreamt about each thing I have to do to today. I also had that dream where you go "I haven't been to class all year!" I was so burned out from the panic dreams that I just said to myself "shut up and go back to sleep."

 

[ter1413]

Thanks and lol, did you mean we ARE your friends here? I might be interested in meeting some folks IRL. Are there any meets? I live in NYC.

Some SF members come to the city just before Xmas. @Texasmade , @edinatlanta , etc.

They love meat-ups!

 

[Texasmade]

Thanks and lol, did you mean we ARE your friends here? I might be interested in meeting some folks IRL. Are there any meets? I live in NYC.

I usually go to NYC the weekend before Xmas. 2 years ago, @edinatlanta met me up in NYC. Last year @PhilKenSebben met me. If I go again this year, I'll send you a message about meating up.

 

[GreenFrog]

I usually go to NYC the weekend before Xmas. 2 years ago, @edinatlanta met me up in NYC. Last year @PhilKenSebben met me. If I go again this year, I'll send you a message about meating up.

Good to see SF continues to uphold the meatup tradition - some things never change!

 

[HRoi]

Thanks - good to see a lot of the familiar faces. Brings me back to a much simpler time.And yes, he's not a full blown narcissist (his older brother, OTOH..), but he has some minor narcissist tendencies.


Thanks for sharing and I'm sorry to hear about your condition. Is it something that impacts your day-to-day life? My condition is hereditary and has a 50% chance of being passed on to kids. My dad has it, for instance. Though his progression seems to have been so slow so as to be unnoticeable and has plateaued. He didn't even know he had it until I found out about mine and asked him to try some movements that easily induce the tremor.

I do try to be an optimist about the condition because there is some research going on for some drugs targeting this, but I also get discouraged by the fact that ET is the most common movement disorder in the world, yet very little progress has been made in the past 50 decades. Scientists still don't even know what causes it and because it's not a disease that kills you, it's arguably a lower priority to the medical community.

My current level of tremor is actually not very bad. People don't even notice it (yet); only I can perceive it. And in retrospect, I've had this for many years looking back at some symptoms. I just attributed the shakes to situational circumstances, like being hungover or being tapped out from the gym. But when I see people who've had it for decades where they are functionally disabled (can't eat or drink because they shake too much), it really gets me down. It's not a guarantee I'll get to that point, but it's a progressive disorder, so it's pretty much guaranteed it will get worse as I get older.

Some invasive treatments I may pursue if it gets to that point include DBS (Deep Brain Stimulation) where they implant an electrode in your brain and hook it up to a battery in your chest, almost like a pacemaker. That, or focused ultrasound, where they use a high powered ultrasound machine to ablate a portion of your brain, which comes with scary side effects, like slurred speech, aphasia, etc.

But yes, you're right. I try to stay optimistic and hopeful that there will be some groundbreaking discoveries in the next decade or so where I can take a medication that squashes the symptoms without any major side effects. That would be the dream.

Thanks and lol, did you mean we ARE your friends here? I might be interested in meeting some folks IRL. Are there any meets? I live in NYC.

And yep, the only area in my life I'm very proud of is my work. I'm doing very well professionally and financially, and I'm very grateful for that. But it's all superficial **** that ultimately doesn't matter compared to the more intangibles, like your health and family / love / relationships. I'd eagerly trade my current situation to have my sister and health back.

I hate narcissists too, they take too much of the attention away from me…

No, but seriously, it sounds that hopefully your condition can be managed. I’d never heard of ET before.

As for life - the only thought i can offer is that tough times can turn around really quick. Sometimes it’s just finding one person/partner/kindred spirit that turns your life around. Or a community that gives you the right support. Or coming home and/or rekindling relationships you valued in the past. I wish one or all of those things for you in the very near future

 

[GreenFrog]

I hate narcissists too, they take too much of the attention away from me…

No, but seriously, it sounds that hopefully your condition can be managed. I’d never heard of ET before.

As for life - the only thought i can offer is that tough times can turn around really quick. Sometimes it’s just finding one person/partner/kindred spirit that turns your life around. Or a community that gives you the right support. Or coming home and/or rekindling relationships you valued in the past. I wish one or all of those things for you in the very near future

Thanks for the kind words - means (meats) a lot.

I’m starting to invest in other relationships and friendships for sure. But my number one priority for sure is to find wifey lol. Modern dating is crazy. I do quite well for myself, but it’s still full of its fair share of frustrations here and there.

 

[jbarwick]

Wrote a whole long note here and deleted it but I just want to say, having to apologize when not in the wrong is BS. It was for one of the cases where you shouldn't say the quiet part aloud but it was the truth.

Also, the egos that doctors have is mind boggling. Yea, you went to school a little longer and specialized in one specific area but it doesn't make you an expert in everything. Having doctors in the family is more of a curse than a blessing.

 

[imatlas]

@GreenFrog I'm sorry to learn about your diagnosis. If I can offer some unsolicited advice, the worst thing you can do for your mental health is to retreat from contact with other people. Meetups are a great idea, and I'd strongly urge you to look into volunteer work, particularly if you can find something that connects to your own diagnosis.

Providing support to people who need it is incredibly validating and good for your mental health.

 

[GreenFrog]

@GreenFrog I'm sorry to learn about your diagnosis. If I can offer some unsolicited advice, the worst thing you can do for your mental health is to retreat from contact with other people. Meetups are a great idea, and I'd strongly urge you to look into volunteer work, particularly if you can find something that connects to your own diagnosis.

Providing support to people who need it is incredibly validating and good for your mental health.

Thanks. I’ve been looking at doing some volunteer work actually. I also looked into some support groups for people with ET but decided against joining because seeing people whose conditions are way worse than my current state would **** me up mentally. It’s as if I’d be looking at my own future.

 

[PhilKenSebben]

I usually go to NYC the weekend before Xmas. 2 years ago, @edinatlanta met me up in NYC. Last year @PhilKenSebben met me. If I go again this year, I'll send you a message about meating up.

Good to see SF continues to uphold the meatup tradition - some things never change!

Doesn't have to happen at Christmas, would meatup anytime! Mo' meat, mo' better

 

[WestLinn]

Thanks. I’ve been looking at doing some volunteer work actually. I also looked into some support groups for people with ET but decided against joining because seeing people whose conditions are way worse than my current state would **** me up mentally. It’s as if I’d be looking at my own future.

I do hospice volunteer work. It is NOT for everybody however (and the three hour time commitment is a bit much on some weeks), however, the families are immensely thankful. I am one who find value in certain sayings and quotes and at times like this, find value in Muhammed Ali's tombstone. Whether you believe in it completely or not, it is not a wrong way to live your life.

 

[WestLinn]

I dreamt I ate a giant marshmallow. When I woke up my pillow was gone

I think the first time I heard that joke was when I was 12. It's a good one, but an oldie.

 

[venividivicibj]

 

[beargonefishing]

I would eat it.