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Click below on “FDA Form Letter” to view a sample of a letter to the FDA.  All you have to do is date it, print it out, sign it, and mail it.  You should be able to edit this document if you would like to use it as a template to get you started.  If you want to add your contact information for the FDA to reach you, that would be great, too! Let’s all be HD/JHD advocates and write to the FDA today!

Mail your signed, completed letter to:

Division of Neurology Products

10903 New Hampshire Ave. Building 22 Suite 4346

Silver Spring, MD 20993

 

FDA Form Letter

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“Look Up”: Part Two, a Short Story by Brent J. Walker

Welcome to Las Vegas

Last week’s installment left the first-person narrator in “Sin City”–Las Vegas–mindlessly gambling and drinking, wondering why he, a trustworthy guy, can’t find true love.

Look Up

Part Two

By Brent J. Walker

When you ask most women what their dream man is, they say something like this: “I want a guy who is tall, dark, handsome, and romantic. Someone who likes long walks on the beach, puppies, and kittens. Someone who likes to cuddle and watch movies, someone who can make me laugh, someone who is kind and gentle and will go out of his way to make me happy when I’ve had a bad day.” Well, that’s funny, because I am all those things, and I can’t keep a woman to save my life.

Am I tall? Check!  I’m above six foot; I think that counts as tall. Am I handsome? Check! I have beautiful baby blue eyes, a strong jawline and a symmetrical face which studies have shown is attractive to somewhere around 90 percent of women. Am I r1omantic? I am as romantic as they come. When you have a creative mind like I do and have been single and alone as long as I have, you spend all day thinking about what you will do if a woman were to finally come into your life. Do I like long walks on the beach? Holding hands with my woman while we feel the sand beneath our feet, stare at the moon, and listen to the waves crash on the beach sounds pretty awesome to me. Am I someone who loves puppies and kittens? Absolutely. I adore animals, and they, me. Animals are easy. All they want is to be petted and loved, and at times rewarded with a treat. I can certainly understand that. I am a simple man; that’s all I want, too.  An animal’s senses puts human senses to shame. They can sense when someone’s soul is pure, which is why they gravitate towards me, I think. Am I someone who likes to cuddle and watch movies? Hell, that’s pretty much all I want. Never underestimate the power of human touch. A simple hug enhances one’s mood tremendously, as studies have also shown. Sex is great and all, but it is the simple act of hugging and cuddling that I find I miss the most about having a girl. Do I have a sense of humor? I am pretty quick-witted. You get me in a room with people I am comfortable with, and I’ll get you laughing in no time. Am I kind, gentle, and have the ability to make someone happy when they are sad? Check, check, and check. So tell me then. Why in the hell I am alone in this world? Everyone deserves to be loved. So why does a good person like me get his heart broken, over and over again?

I’ll tell you why. I suffer a disease of the mind. It’s called shyness. Make no mistake; shyness is a debilitating disorder. I can’t get over it. I’ve tried my whole life. For instance, on my left about two machines over is a petite, blond-haired beauty sitting alone. I should talk to her, but I won’t. Why not?

“People are people. We all need other humans around us in this world to stay sane, and the ability to converse with each other is what differentiates us from beasts,” a friend once told me. He is absolutely correct. Inherently, I know that his logic is true, but there is a blockage in my brain that prevents me from acting out on that logic. Unless you, too, have the disease of shyness, you just can’t fully understand where I am coming from. I’m gonna try to get you to anyway, though, by putting you in my brain for a bit. Here’s a list of just some of the thoughts that came to my mind within seconds of seeing that pretty young thing over there at that machine that prevent me from talking to her.

  1. You’ve let yourself go over the years. You aren’t the strapping, muscular young man you once were; she won’t be attracted to you.
  2. Look at how hot that girl is! She’s probably been hit on by at least ten guys already tonight. That has to be annoying for her. I don’t want to be like everyone else. Besides, what do I have that the other ten guys she rejected tonight didn’t?
  3. She’s probably already got a man anyway, so why waste my time?
  4. Even if I do get the nerve to go up to her and strike up a conversation, I will quickly freeze up and embarrass myself.
  5. I am sure she wants to be left alone and will just tell me to go away.
  6. What the hell would we talk about? The weather? Isn’t that the world symbol for most boring conversation starter of all time?
  7. I bet as soon as I start talking, her boyfriend will pop up out of nowhere, take offense, and sock me in the face.
  8. She’ll know right away that I am lower middle class. Only a guy with money can get a girl like that.
  9. Shit! I lost my pack of gum, and I have been drinking and smoking all day. I bet my breath is horrible.
  10. Tonight’s priority was to gamble and get wasted, not to talk to women. So I am just going to keep doing that.

That’s just a top ten list of thoughts that go through my mind in this situation. There is plenty more I could write down, but it would take way too long to go over them all. Damn, this is frustrating. How do I shut these thoughts off? I know they are mostly illogical. I once heard this kind of behavior called “analysis paralysis.” I like that; it’s a fitting name, and it has a ring to it.

Whoops, there goes my mind again, churning as endlessly as the sea. They say this is the city that never sleeps. Well, neither does this brain of mine. Maybe that’s why I am so drawn to this place. Now, where in the hell is that cocktail waitress? Never mind, I still have half a beer, and it’s not warm yet. Might as well take another long pull and spin that damn wheel again. Round and round the slot machine goes, where it stops nobody knows. But when it does finally stop, it sure as shit won’t stop at the jackpot; that’s for sure. Never seen that happen and probably never will.

Hey, will you look at that? Multiple cherries on the board. That has to be good. I’ll be damned; that spin just won me twenty bucks. From ten dollars left in the coffer to thirty, just like that. Puts me ten bucks ahead on the night. Joke is on you, “Sin City” I’m ten bucks and two beers up now. Ha, ha, I’m feeling generous, too. If that cocktailer ever shows up, she gets a two-dollar tip now.

I should probably quit while I am ahead….but I won’t. Go big or go home is what I always say. Not that the twenty bucks I originally put in the machine qualifies as going big, but you get the point. Cherries are always good, in slots, in scratch tickets, and even in pull tabs. Wonder why that is? Maybe the first slot machine creator ever just really liked cherries and was like, “Hey, let’s make three cherries a win,” for no reason at all. Or maybe it’s symbolic of something. Who really knows?

Sevens are always good, too. But that makes more sense. “God created the heavens and the earth in six days, and on the seventh he rested.” Seven continents and seven oceans on Earth, seven colors in a rainbow, seven days in a week. Seven is considered lucky to most people. Not to me, though. I was born in the seventh month of the year, but I ain’t lucky, never have been and never will be, so I prefer thirteen; it’s my lucky number.  I figure since I am unlucky, and the number thirteen is unlucky, that when we add them together, they cancel each other out. How did I reach this conclusion? I have no idea. Superstitions are funny like that and can be literally anything. Athletes often don’t shave their beards or cut their hair for months at a time if they are on a hot streak, which doesn’t make sense. Long hair makes it harder to see and gets in the way. Seems to me this would make it harder for them to perform at a top level in their respective sports. Rabbits are basically just cute little rodents, but for some reason murdering them, chopping off their feet, and wearing one around your neck is considered lucky. Cinnamon sticks, socks, goldfish, hell, even spiders are sometimes considered lucky, and most people hate them. Almost everyone has a good luck charm of some sort and usually for an illogical reason.

Ah, here she comes with my beer. ʼBout time. She is certainly a busty gal. She’s a bit older, though. In her late forties at least, but still, overall, pretty spectacular breasts that are only just barely starting to droop. They say a stripper’s primo years are between 18-25; once they are closer to 30 than 20, it’s all over. Might as well quit. So where do they go for employment when they are considered too old to strip? They become cocktailers, of course.

See, I can be funny when I want to be. Or was that joke more offensive than funny? Maybe it was. I always think I am a good guy with a high moral compass, but maybe I have it all wrong. Maybe I am just a dick and deserve what I get. She hands me my beer. I hand her a buck. Was going to give her two, but changed my mind. I consider myself a patient, understanding man, but even I have my limits, and she took forever. I think it did anyways.

Is it time for another smoke? I think it is. Got me a fresh beer and currently up some money on this slot. No need to rush and keep spinning the wheels. More time I take in between spins, the longer I can play before I lose it all, and I will lose it all eventually.

I exhale the smoke through my nose. Damn these devil sticks. But like I said, it was a rough year. Aside from getting my heart broken again, my father died. I’m glad, though. The man was in pain for far too long, his quality of life horrendous for years. It was Huntington’s disease that got him. Ever heard of it? Of course you haven’t. No one has unless they’ve gone through it with a family member themselves, which is ironic, because it is one of the most devastating diseases in the world. Have your heard of ALS? Lou Gehrig’s disease? I’m sure you have because the ice bucket challenge that was clogging Facebook feeds for months brought all sorts of attention to that disease. How about Alzheimer’s? I’m sure you’ve heard of that, too. It’s been well documented in movies, books, and songs. How about Parkinson’s? Michael J. Fox has brought all sorts of knowledge to the masses about that one. Well, Huntington’s was compared to having a combination of all three at the same time on a recent documentary, yet so few people know anything about it.

My father was diagnosed with it probably about twenty years before his death. It is a neurological disorder. It begins when a small part of your brain doesn’t work correctly, and basically over time erodes your entire brain, or something like that. Haven’t researched it much because it bums me out too much. It starts with small symptoms. Maybe some minor memory loss, forget a word here and there, maybe lose your balance every so often. No big deal at first. Then it starts getting worse, and the constant, jerky movements start. Neurons in your brain start misfiring more and more, and your body starts moving whenever it wants, and your brain can’t control it. People with HD in the olden days were often mistaken for witches and burnt at the stake. After that, you eventually start the latter stages, which is the inability to talk or move or think properly. My father was like that for the better part of a decade. Twenty-four-hour care was required to feed, bathe, and wipe his ass. My father, the West Point military grad who played college football and ran in the Boston Marathon, couldn’t even wipe his own ass. Can you imagine seeing your father like that for nearly a decade?

That’s not even the worst part. The worst part is that aside from it being incurable, each kid has a 50 percent chance of inheriting it. As if watching my father decline and die for years wasn’t bad enough, I had to watch my father’s brother die of it as well, and my grandma, too, and while I was watching them die, the entire time I’m thinking, “Sweet. This could be my future.” I also have two siblings. Both have been tested. My little sister has it, and my older brother doesn’t, so assuming I am capable of thinking in the future, I will have to watch her die, too. Not me, though. I remain the sole untested Davis child. Fuck that shit. I wouldn’t be able to handle it if was positive because I am single, and I live alone. Not only would I not have the emotional support of a girlfriend or fiancé like my siblings did when they went through the testing process, but what is the point of getting tested for something that has no cure? There are only two valid reasons to get tested, in my opinion. If there was a viable treatment option, then obviously I would want to get tested immediately and start the treatment. Or if I was married and we wanted to have kids, because there is no way I am passing this disease on to them. I would adopt or abort before I did that.

At this point, I have pretty much accepted the fact that I will most likely die single and alone, so I guess fingers crossed for a cure or some kind of treatment, but it doesn’t really matter at this point.  For now I will remain untested. Can you blame me? What would you do if you were in my situation, and literally the flip of a coin was what would determine whether you would become terminally ill or not? For the most part, I have kept this part of my life a secret. The last thing I want is for people to pity me. Very few people know about it.

To be continued next Wednesday, February 1

You can hear Help 4 HD Live!’s interview with Brent on BlogTalkRadio: http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up

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“Look Up”: A Short Story by Brent J. Walker

Brent Walker, Author of “Look Up”

 

Foreword

By Sharon McClellan Thomason

Brent Walker, from Seattle, Washington, approached me about three months ago about a short story he’d written. I asked him to send it to me. He warned me that it was a little long, but as soon as I started reading it, I was hooked!

By way of introduction, Brent says, “My father, John, was one of four siblings, brothers Doug and Jim and sister Irene. I only met Jim a few times, and it was common knowledge that he was a little off. We mistakenly just assumed that it was due to the trauma he endured in the Vietnam war, when in fact it was HD, as we came to find out later in life.

“Their mother, Gladys (my grandmother), passed before I was old enough to remember her or to know anything about Huntington’s disease. At the time of her death, no one had ever heard of HD. About 20-25 years ago, I started to become familiar with Huntington’s disease and came to the realization that this was the disease that was responsible for the heartache of the Walker family and that my father was at risk.

“There was a huge technological advance in the early 90s, I believe, that allowed people at risk for HD to get tested. My father got tested soon after and was unfortunately positive. This put myself, my little sister, Stacey, and my older brother, Scott, at risk of inheriting the disease, by 50-50 odds. My brother was the first sibling to get tested, about 15 years ago. He tested negative, then proposed to his wife shortly afterwards. They have three kids and are still married to this day. My sister got tested next, about five years ago, right before she, too, was going to get married. Unfortunately, she tested positive.

“For the better part of a decade, I debated whether I should get tested. Having watched my father degrade for years before he eventually passed a few years ago, I was in no hurry to get tested. For me, it was very simple. There were only three reasons to get tested: (1) if I, too, was going to get married, so my future wife would know what she signed up for; (2) if I wanted to have a child; I had already decided that I would only have kids if I was negative; and (3) if there was any feasible hope of a cure on the horizon.

“This past year, I had read  lots of information about possible treatment for HD coming up soon. There is more hope out there right now than ever before. So I elected to get tested. On December 13, I found out I was negative. I took my brother with me, and he jumped into my arms after the doctor said I was negative. While relieved, I must admit I was not nearly as excited as I thought I would be. Survivor’s guilt is a real thing.”

I asked Brent what inspired him to write the story. He told me, “I have always been very fond of writing and have written a lot of short stories in the past (I even wrote a screenplay once). but none of them have ever been published. For me it is very simple. I want to help people. I don’t care about money; I never really have.

“Most of my life, I have been haunted by this disease. For twenty years at least I have had the weight of this on my shoulders. For the most part, I did not talk about it much in those 20 years as I didn’t want people to pity me or treat me differently. When I finally decided I was going to go through with it and get tested, I decided to open up more about it to friends and coworkers, and what I found was that my story was not met with pity but that it in fact seemed to inspire people. So perhaps by sharing my story, I could do just that if I wrote about it.

“I would say about 90 percent of ‘Look Up’ is based on my own experience. I go to Vegas with friends every March, have for about seven years, and I take that time to reflect on my life and think about where I am. The idea for this story has been in my brain for years, but I only recently decided to put it on paper and share it.”

You can hear Help 4 HD Live!’s interview with Brent on BlogTalkRadio: http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up

Brent’s story will be published in three weekly installments. The story includes some adult situations and profanity. This is Part One.

Look Up

Part One

By Brent J. Walker

It reeks in here! Stenches of stale beer and ancient cigarette smoke invade my nostrils as I push the spin button over and over. This has to be something. Give it to me! Damn! Only a 25 cent win?  I’m playing max bet at two bucks a spin. I hate that the lights flash, and the music plays for such a small win. It gets me excited for nothing. Doesn’t matter. I’m going to keep spinning this damn robotic and soulless wheel anyways. I plan on losing all my money as slowly as possible, though, so I light up a fresh smoke and take a sip of my beer.

“Cocktails?” a middle-aged blonde waitress wearing a frilly purple dress asks. She has wrinkles on the corners of her mouth, a side effect from the years and years of fake smiles she has had to give over her career in the service industry.

“I’ll take another beer,” I reply. She jots it down on a small pad of paper. My current beer is nearly full, but they are free when you are gambling, and it’s just about the only way you can feel like you are winning in this Godforsaken city.  Besides, I’m stoned out of my mind, and I have cotton mouth like a bastard.

I take a huge swig of my current beer, and just like that, the cold, refreshing amber colored beverage is halfway gone.  Like my money is going to be if I keep playing this game. This city . . . it’s a paradox. I look outside, and I see a homeless man asking for change. Some poor bastard that probably moved out here to pursue the American dream of fame and fortune before getting seduced by the slots and the card games, and blowing his entire life savings.

I look straight ahead, and I see a couple of young girls weaving around drunkenly with blank-eyed stares, mumbling nonsense conversations to each other that neither will remember in the morning. I just hope they make it to their rooms safely; the wrong guy sees them, and he might just take advantage of their inebriated states and convince one of them to come back to his room. Predators abound in the “City of Sin.”

I look to my left, and I see a man in a suit looking for lonely dudes he can convince to go to his strip club. Free ride there, free ride back, and no cover charge is usually the pitch. What they don’t always tell you is that it’s a three-drink minimum once you get in, and drinks go for about twenty bucks a pop. Not to mention those strippers are very persuasive. Before you know it, you just dropped a hundred bucks on drinks and lap dances and left wondering how the hell that just happened.

They swindle you in this city any way they can. They don’t just want a week or two of your wages; they want your whole damn bank account. But look up, and damn! These casinos are some of the most impressive manmade structures on the entire planet. Never mind that the cost of the chandeliers on the ceiling of the casino I am currently at might cost more money than I’ll make my entire life. Beauty is beauty, and boy is there beauty in this town despite its obvious ugliness and degradation. It’s interesting how one’s mood can be immediately changed when you look up, especially when you are outside. Seriously! Try it some time. When you are sad or angry, and you look up at the sun or the moon, the clouds or the stars, those feelings often go away. You realize how beautiful and gigantic the world truly is. The human race is nothing but a small part of it, which makes your petty problems completely insignificant.

I wonder how long it will take me to get that drink. They aren’t in any hurry; that’s for sure. Why would they be? The longer they take, the more money you will spend on the slots. It must be nice. I worked at a restaurant for a while. Speedy service was important. Longer it took to get the guest his beer, the smaller the tip you might get once the check was dropped, and tips were your livelihood. It sure as hell wasn’t the minimum wage. It must be nice to be able to take your sweet time and know that you will most likely still get a buck tip. It’s the least people can do for a free beer. To be fair, I don’t know for sure how long she’s been. Weed is funny like that sometimes, and I’ve had my fair share of it the last couple months. It’s a stress reducer for me, and boy, have I been stressed. Ten minutes can feel like an hour, and an hour like ten minutes. Doesn’t matter. I still have half a beer and plenty of smokes. Speaking of, let’s light up another.

Cigarettes! Fucking cigarettes, devil sticks. Can’t believe I picked up the habit in my thirties. Who the hell does that? What can I say? It was a rough year. It started when I got my heart broken by a woman named Megan that I had fantasized about being with for five or so years, and I’ll be damned if I didn’t finally succeed and get her in my bed and hold on to her for some time after. Happiest summer I’d had in a decade. Of course, it didn’t last; it never does with me and women. Shortly after Megan broke my heart, my father passed of a rare genetic disorder. More on that later. I swear I’m cursed when it comes women. I’m pretty sure I had a great, great, great grandpa once who pissed off a gypsy or something. I can picture it now.

“Because of you what you did, your great, great, great grandchild will never find love,” the gypsy will have said, and of course that happens to be me. Either that, or I was a terrible person in my former life, and God is smiting me for it in the current one. I used to think there was something wrong with me. Why else do I continuously fail with women? But I’ve realized something over the years. It’s not my fault. Not at all. I failed with Megan because her ex cheated on her constantly with several different women for the entire decade they were together. Hard to trust anyone again after that. Which is unfortunate, because I am as trustworthy as they come.

To be continued next Wednesday, January 25, 2017.

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