Man o' Steele has a brain disorder!

[dsteele]

Actually, it's a minor nuerological disorder called Essential Tremor. I'd like to talk about it and perhaps save a Scout or anyone else you might meet with it the embarrassment of having to explain it.

 

Essential Tremor is not a life-threatening illness. I'm not looking for sympathy. I'm looking to help you understand the condition a little, entertain your questions, and participate in an awareness campaign begun by the International Essential Tremor Foundation.

 

It began sometime around third grade. My hands began to shake slightly. It was noticible to me, but no one seemed to have any answers. I was epileptic due to a head injury when I was six and my family figured a little shaking of the hands was no big deal. Perhaps a side effect from the Grand Mal Seizures.

 

The pediatrician I saw wasn't concerned.

 

Life went on. My hands shook. That was all. Scouting was big in my life as I went on. All in all, my fellow scouts treated it as if it didn't exist. Sure, I endured a few hurt feelings being called Spaz by a few unkind Scouts -- but I'm a confident (okay, cocky) guy and weathered it.

 

Please don't call me Spaz, however. The term has sting then and it has sting now.

 

Life went on. I developed ways to hide the shaking without even realizing I was hiding it. For example, handing "folding money" to a clerk over a counter led to the money and my hand shaking as if it would kill me to part with the cash. So I started to slide the money on the counter (there's no tremor if I don't fight gravity) and act like that's how you pass money. Slide the change into your hand and pocket the hand and no one is the wiser.

 

I did and do a lot of public speaking -- with my hands in my pockets or planted firmly on a table or my hips.

 

For years and years (from third grade to age 29) my family doctor would just shrug when I held out my hand flat and asked "can we do something about this?"

 

I just let it go. After all, it was merely a minor inconvenience. I admit I got tired of hearing people whisper "Boy he's really nervous." or "What's the matter with him." The answer, in my mind, was "nothing. I shake. That's all."

 

Then, one day, I did a boy talk. I was handing out pogs to the Cub Scout age boys and wearing my Captain Cub Scout costume (A Cub Scout uniform complete with cape and mask.) My hands were shaking terribly. I was a DE and I was very tired and hadn't been eating well (all of which will aggravate the tremors.)

 

This first grader looked at me and said, with a great deal of sadness (pity) in his eyes and voice "Why does Captain Cub Scout Shake?"

 

It cut me to the bone. Not the kid's comment itself. The kid's pity and sadness. And my own helplessness to stop the shakes. A feeling of anger overcame me. Anger at the condition and my doctor's inability or unwillingness to do something. That was on a Friday.

 

That Sunday, I'd been asked to present a different Cub Scout with his religious medal at his church service. I went and we went up front to pin the medal on his shirt. I couldn't undo the clasp. With as much dignity as I could muster, I placed the medal in his hand, shook the other one and walked back to my seat.

 

Monday, I walked into a walk-in medical care and showed my hands to the doctor. He was a young guy -- not much older than me. He referred me to a Neurologist.

 

The Neurologist had me hold out my hands, touch my fingers to my nose, stand on one foot, close my eyes and walk a straight line, etc. Simple stuff.

 

He diagnosed Essential Tremor and prescribed Propranolol. I've been taking it ever since and will take it until it stops working.

 

The medicine helps a great deal. The disorder is progressive, although it can take decades before it gets really bad.

 

Now we're coming to the part where you can help. If you've read this far, I thank you. If you haven't read this far, you don't understand why I'm thanking you

 

You can help by realizing that not all hand tremors are related to Parkinsons, alchohol withdrawl or other serious problems. You can help by not mentioning tremors to the person until you get to know him/her well.

 

I now carry a card in my wallet, courtesy of the International Essential Tremor Foundation, that reads, "MEDICAL ALERT. I have a condition called essential tremor which may cause tremors in my hands, legs and head. I may be unable to write my name, feed myself, or walk steadily. I AM NOT INTOXICATED. Please call my family or physician for help."

 

On the inside of the card is my family and physician information. I had one of my DE's fill it out for me. My hands were shaking too badly to hit the small spaces.

 

It's taken me years to learn to accept help like the simple offer of a young District Executive to help me fill out my medical alert card. Her simple offer, "Would you like me to fill that out for you?" really went a long way toward helping me. Not that I'm helpless. I can still thread a needle as some of you well know, but I have to use a different technique.

 

Okay. I've talked enough for now. Thank you for reading. I'd love to answer any questions you may have.

 

DS

[red feather]

BRAVO!

 

Hope you come out my way. You Know the reason

 

Vasalred

 

yis

[Eamonn]

Dave,

Have to admit that I was ready and set to make some smart remark when I saw the title of this thread. All in fun. As I hope you know, I try not to hurt anyone.

I had not heard about this before now.

Many thanks for sharing it with us.

It is strange and not very kind, how quick we are at times to pass judgement on things and stuff when we can be so far off base.

Eamonn

[dsteele]

Eamonn:

 

It is I who owe you the apology. There was a bit of bait in the title of this thread. The topic originally arose during a chat session and we as a group decided there could be value in me coming clean about my condition. I would like to educate people about this condition so no kid gets made fun of or is unnecessarily worred about.

 

I debated with myself for days of what to call it that would get it read and thought about. I considered "Shaky Scout" or "Essential Tremor," or "Educate yourself," etc. but none seemed to me that it would draw people into reading it.

 

I finally settled on the Steele with a brain disorder thing and hoped it would draw readers and not negavitity.

 

Thanks for the support, guys.

 

Dave

[Night Fox]

Dave,

It is not easy to face the world with our challenges so open for all to see. We work with youth who sometimes come with labels like ADD, Tourette's Syndrome, tremors, deafness or learning differences. Some of these are easy to spot and other are not as evident. The bottom line is to take these youth for the gifts they are, not the labels society gives them.

You show us why the scout that is brave is not just the one who saves a drowning victim but also the one who learns a different way to thread a needle.

Thank you for trusting us with this side of you.

NF

[sctmom]

Thank you for sharing. Am so glad you found some medicine that helps.

 

Is this something that is hereditary or do they know?

 

 

 

[evmori]

Dave,

Thanks for sharing.

 

Ed

[SharonNC]

Hi Dave,

Thank you so much for sharing yourself with us! We all have so many things that we're taught to hide. As I read your post I was reminded of the cruel way children of all ages can be to those they don't understand. You have helped to break down some of those barriers, thank you!

 

I pray that you will be relieved by the medicines and that you will continue to be the helpful caring person that you have shown yourself to be.

Sharon

[mk9750]

Dave,

 

I play golf with a guy who shakes similiar to what you describe. He's never explained why, and as far as I know, know one has ever asked. At 38, he has already survived Luekemia, and I think we all just assumed that this was a left over result of that battle. Now it's maybe, maybe not.

 

I think I've come to know you fairly well through these discusions, and have always felt that you are an exceptional person. I know that you didn't intend this, but I now know that even more.

 

I have no information to share, so I am of no value in the thread. But I truly thank you for starting it.

 

Mark

[FScouter]

Would you like me to fill that out for you? The little things mean a lot.

[Eagledad]

The last thing I tell my students at SM Specific is I don't think we are standing in this particular place at this moment by accident. We have purpose and we've been queued in a direction to make a difference. Your courage has that purpose and who knows how many of us are better from it? Who knows how many of our sons will be become better men from it? Thanks dsteel.

 

I love this scouting stuff.

 

Barry

 

[Fat Old Guy]

I was wondering why is called Essential Tremor thinking that "essential" meant "needed" or "fundamental" I soon found out that "essential" in the medical world means "unknown cause". Those doctors, doing what they can to confuse us.

 

I found a website, http://www.essentialtremor.org/, that has quite a bit of information.

 

[sctmom]

My ex-husband has had a problem with his hands shaking since he was in his 20's. His mother had the same problem to some extent. Also his grandmother had this. I was told his great-grandmother also suffered to the point that she would not eat in front of other people because it was so hard to get food to her mouth. That's why I asked if it was hereditary.

 

I just sent my ex the website Fat Old Guy posted. I know his grandmother's got worse the older she got. She just passed away in her late 80's. Her hands and head would shake a lot.

 

[dsteele]

Sctmom:

 

Essential Tremor has also been called Familial Tremor and can run in families. I'm beginning to think it may run in my family -- my mother has it, but it didn't start until she hit her mid-fifties.

 

Fat Old Guy, thank you for the web site. Actually, I became aware of it only a couple of weeks ago and joined it. They're the ones who sent me the pocket card I referred to in my original post. They also sent out a lot of helpful tips.

 

Sctmom, it sounds like your ex has it. Essential Tremor can (and as I understand it usually does) get worse as a person ages.

 

I can understand why your ex's older relative would refuse to eat in front of others. There is a temptation to withdraw from public view.

 

Thank you all for your kind words.

 

Please feel free to ask me any question you happen to be sincerely curious about.

 

DS

[SR540Beaver]

Dave,

 

Thank you for posting this. While my "problems" as an insulin dependent diabetic are not physically manifested, I can appreciate what you have had to do to learn to cope with your illness. Your story brought to mind something I experienced this past spring at Camporee. Our Webelos den was camping with a local troop. The SM and his Eagle Scout son are both big in OA. At campfire one night, they did a calling out ceremony for OA. His son was the one doing the call out. I had never been around this boy before, so I had no idea of his problems. He started out speaking with a clear booming voice when all of a sudden his words would occasionally come out strange. A word such as "worthy" would turn into wor-uh-uh-uh-uh-th-th-thy. He didn't go back and try to repeat the word but just continued without skipping a beat like nothing happened. It caught me off guard and I waited for snikering from all assembled. I never heard any. I was amazed by two things. One was that the scouts conducted themselves well and didn't laugh or make fun of this "weird" kid and the other is that the young man had the courage to stand in front of a huge crowd and speak publically. The more I listened to him the prouder I was of him. I've seen him since then and noticed that he has an occasional tick as well. This boy could have easily withdrawn into a shell. I feel certain that he is as outgoing and confident because of two things, supportive parents and his scouting experience. Good for him and good for you! Keep up the good work my friend!!