Man o' Steele has a brain disorder!

[Bob White]

Hi Dave,

You and I have discussed this off the board and so I won't repeat those here, but I do congratulate you for being willing to share this information with others. Kids can often be very cruel to each other especially when they focus on what appears to them to be a flaw or weakness in another person of any age. I hope that this information will help us as leaders to be more aware of the personal conditions and needs of the scouts we serve.

 

Thanks for sharing,

Bob W.

[purcelce]

I thought the only way you could get a brain disorder was by becoming a "Silver Tabber"...At least that's what people say about me...

 

Nice post, very informative.

 

YIS

Cary P

[Zahnada]

Great post, DS.

 

Awareness is one of the keys to working with kids. There are plenty of boys with other disorders (diabetes, ADD, Essential Tremor, etc) and as leaders we need to be aware of what these disorders are. However, what we do with this knowledge often depends on our own judgment. I'm sure (sorry to speak for you DS) that Dave did not want to be babied or pitied as a child. He truly is an amazing person just like the thousands of boys with other disorders. My applause to them all.

[dsteele]

Zahnada:

 

Your words encouraged me to post this topic. I thank you for the encouragement and truly hope it helps younger Scouts.

 

I also hope it helps boost the understanding of adults who may have Essential Tremor.

 

As a Scout with tremor, there were very few questions or comments about it. A few called me Spaz and some-such, but for the most part, the ones I really cared about -- my friends, simply accepted it.

 

I've found the real acceptance problem to be in the adult world. You weren't putting words in my mouth by saying for me that I don't like to be babied and never have. I hate it when people ask me (when they think they are familiar enough) what is wrong with me. I really don't like it when a well meaning aquaintenance grabs my shaking hand to try to "still" it.

 

It may interest you to know that I don't shake in my dreams -- even though I have had the condition almost all of my life -- but the condition also disappears when I'm asleep. Part of the enigma that Fat Old Guy correctly called "Essential" in the medical sense.

 

DS

[Twocubdad]

Thanks for sharing, Dave.

 

I used to have a painter who worked for me whose hands shook so badly he had to use both hands to hold a lighter to light a cigarette, and still had a hard time touching the flame to the tip. Of course, being a painter, it was undoubtably alcohol related. (That's a building industry inside joke.)

 

You would watch the guy and wonder how in the world he could ever paint a straight line. But he had learned to adapt somehow and with his hands shaking an inch back and fourth could paint a perfect straight. He was really remarkable to watch.

[scoutldr]

For as long as I can remember, my late Father called me "Shaky Jake", and he would laugh at me when doing things like trying to hit the slot on a screw with a screwdriver. I find it difficult and embarrassing to eat soup in public...not much is left on the spoon when it reaches my mouth. At an early age, I realized I would never be a brain surgeon. My handwriting, once a source of pride, has been getting progressively worse over the years. I don't shake all the time...only when trying to do something like raise a spoon to my mouth. I blamed it on too much caffeine, but after reading your post, I now realize this may be a treatable disorder. I also recognized propranolol as being Inderal, a beta-blocker used for high blood pressure.

[dsteele]

Twocubdad:

 

I got the painter joke. A landlord of mine once paid dry-wallers up front and told me the same joke (lesson.) Yes, it is possible to learn to live with tremor . . . regardless of the cause. Practice makes perfect.

 

Sctldr:

 

It sounds as if you have tremor. I'd suggest the web site that Fat Old Guy suggested . . . it has some tools that can point you in the right direction to seek treatment. Regardless of the cause (Esssential tremor in my view being one of the more benign) tremor of the hands is a symptom of something. www.essentialtremor.org can help you.

 

You're also correct that Propranolol is the brand name and Inderal is the generic. It is a blood pressure medicine and a Beta blocker that also happens to help with essential tremor.

 

The slotted screw thing and detail work was a cause of much tribulation for me for years and years. It sounds like you have the same symptoms.

 

I hope I'm not embarrassing you, but I'm assuming that since you posted online that you're looking for help. It is available.

 

I, too, don't get too much on the spoon when I try to eat soup. My advice is to aim for the solid stuff (celery and so forth) with the spoon. Shoot -- use a fork for the solid stuff if you have to.

 

Now, here's a tip I just tried the other day and it worked. It came from a brochure I downloaded from www.essentialtremor.org as a member (the cost was $25.00 for a year) called Coping with Tremor which was a compilation of tips from others with tremor.

 

When you finish the soup (the solid "fork size pieces" tell the waitress that you have a medical condition and your hands shake. Believe me when I say I understand how this can hurt the dignity. Then compliment the soup and ask the server to pour it from the bowl into a mug for you. Drink the remainder and enjoy.

 

I love soup, but dislike splashing it on the table or my fellow diners. Mugs make it a little easier.

 

Tremor isn't fun, but it isn't the end of the world -- far from it.

 

In my more cocky moments I prefer to think of it as the earth loves us so much that gravity works extra hard to draw us to the ground. The divining rod effect of our fingers, legs and hands is simply a reverb of that love.

 

 

Lord, that sounded corny even to me

 

DS

[matuawarrior]

Hello DS,

 

Great Post! It takes a strong person to learn to deal with their challenges.

 

Thank you for Sharing.

 

Matua

 

[ozemu]

I watched a PL with cerebal paulsy speak during a Scouts Own service a year or two ago. Again not a comment from the Scouts. It seemed as if everyone was willing him on to get through the moment.

 

No idea about what he spoke of but two things remain.

 

His courage;

 

the father (SM) who moved quicky and quietly to a nearby position as the PLs shakes and speech got worse. Ready to catch him I suppose. But otherwise he did not help.

 

No-one mentioned anything after either. I think that (at least within Scouting) we generally view people who cope with disabilities with admiration and feel that our words would be insufficient in light of such determination and courage. Regardless of age Ive seen similar silence around many Scouts and leaders with a range of disabilities.

 

Maybe I see the world through rose coloured glasses but it seems to be the silence of wow - that was impressive. I wonder if I could be that strong.

[dsteele]

You have keen insight.

 

I also admire the strength of Scouts who overcome adversity.

 

I almost feel ashamed at trying to hide my tremors -- many of the volunteers I work with and many of the professionals I work with in neighboring councils have no idea I have this disorder. In 30 some years I've learned to hide it well.

 

Of course the folks I work with closely from day to day know there's a problem, but they ask no questions. Now, thanks to the internantional essential tremor foundation, we're able to have open discussion.

 

I'm not sure it's bravery that drives the discussion. Perhaps it's fear. Both emotions are on the same coin.

 

DS

 

[packsaddle]

Dsteele, this really struck home with me. I have tremendous sympathy for boys who have some characteristic that causes them personal anguish, and allows other boys to tease. It has taken some time for me to learn to let them know that I am always going to 'be there' for them if they need help...and then treat them just like anyone else. It really does my heart good to see boys, some of them with profound genetic or similar disorders, joining in as.. and being treated by the other boys as... just other guys. Part of the spirit of scouting.

[mk9750]

I think I have recounted this before, but one of the top three or four memories I will take from my Scouting career is the the scene where one of our Scouts, with Down's Syndrome, finally kind of broke away from dad for a while at summer camp to sit around the campfire with just the guys (no adults). they were doing a type of "whose like is it anyway" thing, and this kid was having a blast, and the other guys were really having fun with him (positively). Dad wandered over when he realized his son wasn't in his tent, only to have the boy tell dad to "go away, I'm having too much fun!" After he said it, he must have realized he'd never spoken up to dad like that before, because he got a little scared. Dad thought it was the greatest thing in the world: His son, who always needed someone there to help, showing a little independence.

 

To steal a line from one of my favorite posters, "Man, I love this Scouting stuff!"

 

Dave, I'll bet that even though most of your freinds and aquantences don't know what your affliction has been named, they recognize that you struggle with it none the less, and I'll be ttheir admiration for you is high because of it. I know that I am proud to know you. I bet they REALLY feel proud to know you.

 

Mark

[dsteele]

Thanks to your support, I have decided and taken action toward helping others with Essential Tremor -- even though it's a small start, I like to think it's a start.

 

My Kiwanis club passed around a list of speakers and topics we would like to hear in the upcoming year. I wrote my name as the speaker and Essential Tremor as the topic.

 

The chairman got the list and asked me "what's essential tremor?" I held out my shaking hands and said it's the neurological condition that causes this." No anger on my part, but no understanding on his part, either. I'll give him a brochure next week.

 

I hope he lets me speak. It's a difficult thing to understand because it causes only inconvenience and misunderstanding and not death. Therefore, there really aren't sad stories to tell and no one dies from it.

 

However, there is no small amount of pain. I'll never be able to ... (Jeez. I can't even go down the road of what it prevents me from. I won't allow myself. It isn't productive.)

 

What is productive is to hope that someday I'll be able to be as steady in the hands as the people I see every day. That would be cool and I've never had it.)

 

Funny story: I was considering the surgery that puts a probe in the head of the one with tremors and a pace maker in the chest. Even went so far as to tell my wife that I was going to do it. She read the literature and said, "there's a 1% chance of death if you go for it and a 5% chance or paralysis or loss of speech if you do." I took that to be a 99% chance of tremor free and a 95% chance of tremor free with speech -- but she didn't see it that way.

 

So I'll wait for the surgery and take my pills like a good boy.

 

Thanks for listening.

 

DS