Roche Phase III GENERATION HD1 Study: Announcement of First European Countries/Expected Sites (Spain & UK)

The purpose of this Phase III study is to evaluate the efficacy and safety of RG6042 treatment for manifest Huntington’s disease. This global study will involve 80-90 sites in approximately 15 countries around the world We are pleased to tell you that set up of the GENERATION HD1 study has continued and today we are sharing that Spain and the United Kingdom will be a part of the Phase III study. It is important to note that these sites are not fully activated nor recruiting yet. We hope to complete the final steps as quickly as possible.

Additional countries/sites involved with the study will be announced on a progressive basis – as we obtain country approvals and when sites are nearly ready to enrol patients. More information about the study will be posted on ClinicalTrials.gov, including individual site status.

Spain expected sites for GENERATION HD1 study

  • Badajoz, Badajoz – Hospital Infanta Cristina
  • Barakaldo, Vizcaya – Hospital Universitario De Cruces
  • Barcelona, Barcelona – Hospital Clínic De Barcelona
  • Barcelona, Barcelona – Hospital De La Santa Creu I Sant Pau
  • Burgos, Burgos – Hospital Universitario De Burgos
  • Madrid, Madrid – Hospital Ramón Y Cajal
  • Madrid, Madrid – Hospital Universitario Fundación Jiménez Díaz
  • Sevilla, Sevilla – Hospital Virgen Macarena
  • Valencia, Valencia – Hospital Universitari I Politècnic La Fe
  • The Roche Spain Medical Information team can be contacted for more information about these sites/the study: spain.medinfo@roche.com

United Kingdom expected sites for GENERATION HD1 study

  • Aberdeen – Aberdeen Royal Infirmary
  • Birmingham – Birmingham and Solihull Mental Health Foundation Trust
  • Cambridge – Cambridge Centre for Brain Repair
  • Cardiff – University Hospital of Wales
  • Glasgow – Queen Elizabeth University Hospital Glasgow
  • Leeds – Leeds General Infirmary
  • London – National Hospital for Neurology and Neurosurgery
  • Manchester – Central Manchester University Hospitals NHS Foundation Trust
  • Oxford – John Radcliffe Hospital
  • Sheffield – Sheffield Children’s NHS Trust
  • Southampton – University Hospital Southampton NHS Foundation Trust
  • The Roche UK Medical Information team can be contacted for more information about these sites/the study: (+44) 0800 3281629 or medinfo.uk@roche.com

Separately, the observational HD Natural History study (Clinicaltrials.gov ID: NCT03664804) is open and some of the sites have started recruiting. The planned sites in Canada, USA, Germany and UK were announced in November 2018. Information about the study, including individual site status, is posted on ClinicalTrials.gov.

The decision to join a clinical trial is personal and involves many factors. People interested in participating in any clinical research should discuss with their HD specialist about what may be best for their situation.

aAbout the Phase III GENERATION HD1 Study The GENERATION HD1 study will evaluate the efficacy and safety of RG6042 treatment given once per month or once every two months (bi-monthly) over a period of 25 months (approx. two years). This global study will enroll up to 660 patients with manifest HD at 80-90 sites in approximately 15 countries around the world.

GENERATION HD1 is designed to determine the effectiveness and safety of RG6042, and therefore includes a comparison to placebo. Participants will be randomized to one of three treatment study arms: RG6042 monthly, RG6042 bi-monthly or placebo monthly. This means for every two participants randomized to RG6042, one will receive placebo. The study is “double-blinded,” meaning neither the participant nor his/her investigator or site staff will know which study arm the participant is assigned.

For all patients who complete the GENERATION HD1 study, an open-label extension study with the option of receiving RG6042 (no placebo control) is planned, pending eligibility, approval by Authorities and Ethics Committees/Institutional Review Boards and if data support the continued development of RG6042.

How are the clinical study sites selected? A variety of factors influence site selection, including assessments on experience with HD studies, clinic infrastructure capacity to run the study as well as usual site activities, ability to operationalize the study as quickly and completely as possible, patient population, and geographic location.

We have designed the program to provide the required data to Authorities so that the benefit-risk of RG6042 can be determined as quickly as possible. Our ultimate goal is that this investigational medicine can be approved by Health Authorities, and made accessible to the broader HD community.

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FDA Writes Back

Voices from all across the United States are being heard by the Food and Drug Administration (FDA) in Silver Spring, Maryland.

Help 4 HD International issued a call for action to the Huntington’s disease community on January 28 of this year. We asked as many people as possible to send a letter to the FDA addressing three big questions:

  • Why is there only one treatment approved for Huntington’s disease?
  • Why are clinical trials moving to other countries?
  • Does the FDA understand that time is something we simply don’t have?

We provided a pre-written letter on our web site and invited people to download the letter, add to it or change it or leave it as is, and mail it to the FDA.

Hundreds of people responded to our call, and the FDA is listening. Those of us who sent letters began receiving responses this past week, and the responses are promising. Though the letters appear to be computer-generated, they speak directly to our concerns. In part, the letter I received reads:

Your letter serves as a powerful reminder of the kind of strength it takes patients and their families to battle Huntington’s disease every day.

We understand that Huntington’s disease is a hereditary, debilitating disease with many physical and emotional symptoms that have devastating impacts on patients and their families. We also recognize the critical unmet medical need for new safe and effective treatments for Huntington’s disease.

FDA is committed to working with drug companies and the Huntington’s disease community to facilitate the development of new drugs to treat this devastating disease. We are prepared to use all expedited development and approval pathways available to us to further this mutual goal.

Thank you to everyone who sent letters, and a special thank you to WeHaveaFace.org for partnering with us in furthering our mission and to CIRM (California Institute of Regenerative Medicine) for helping publicize it. We are hopeful that this marks the beginning of a new chapter in the relationship between the Huntington’s/Juvenile Huntington’s disease community and the FDA. We’ll be keeping a close watch to see what happens with current and new clinical trials! For now, it’s important for all of us to realize that our voices CAN make a difference!

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

Part Three left our narrator heading back to his hotel with a backpack that contains something he’s bought for $600 from a guy named Sergio.

Look Up

Conclusion

By Brent J. Walker

Whoops! That was one of my what I like to call “knee-jerk reaction” thoughts. Depression is a bitch that way. I know all women aren’t bitches. I hate when those kind of thoughts spring into my head. I don’t want to feel that way about women, but when literally every single woman I have ever been involved with has screwed me over, and by very little fault of my own, it makes me bitter. Well, losing my first girlfriend was partially my fault, I guess. Looking back at it now, I could have been a better boyfriend, but come on. It was my first love. I didn’t have enough life experience to be a good boyfriend.

I’ve made quite a bit of progress walking, and my casino isn’t far off now. There is another casino nearby that is doing its own private show, much like the private fireworks show, only this one is different. Every so often, its giant water fountains will shoot up waves of water about 50 feet into the sky. A crowd of bystanders is watching as the wave reflects into the casino’s giant windows, making it appear as if two simultaneous water shows are going on at the same time. I look up at it for a while but keep walking until the show runs its course. I am now at the door of my casino. I enter. There are dozens of people posted up on various slot machines, but the bulk of the populace is at the card table games. All but one or two tables are completely full as people nervously clink their chips while they play Blackjack, Poker, Roulette and Craps tables. For whatever reason, the late-night gamblers seem to prefer the tables. I guess because it’s much more interactive. A great way to socialize and stay awake for those people that aren’t quite ready to call it a night yet.

I walk through the crowd, peeking at tables. Some people have approximately the equivalent of my yearly income in chips in front of them. Must be nice to have so much money you don’t even bat an eye once all those chips disappear, and eventually, more often than not, they will. Around the corner are the elevators that will lead me to my room. I head over to them and stop. There is something I have always wanted to do but never quite had the guts to. I pull out a hundred-dollar bill and laugh to myself. Why the hell not? I walk over to the closest roulette table. About three other people are placing their bets, which means I can still place my bet. I give my hundred to the guy in charge of spinning the wheel.

“One hundred dollars coming in,” he yells out loud to the camera or pit boss currently watching him.

He has to make sure all big bills he gets are accounted for so he can keep his job. Or maybe it’s so he won’t get an arm broken. This city was created by the mafia, after all. I have to believe there are still mafia type rules in place even in this day and age, and God forbid what will happen if the owner of the casino gets shorted! I mean, how is he supposed to feed his family with only billions? The dealer, or maybe in this game he’s called the spinner, gives me ten chips worth $10 each. Most of the tables at this casino require a minimum of $10 to play. This roulette table is no exception. I grab all ten of my chips. For some reason, people seem to think you should always bet on black at these tables. Apparently black is lucky, I guess. That’s the stereotype, right? Anytime you tell someone you are coming to this city, they say, “Put some money on black for me while you’re there.” Have you ever heard anyone ever say, “Put some money on red for me?” I sure haven’t. Wonder why that is? But screw everyone and their advice! I grab all my chips and put them on red. If the ball lands on red, I double my money; if it lands on black, I lose it all. It’s a 50-50 shot, but in a casino, that’s about the best odds you can hope for . . . which is ironic, considering my chances at a normal life are the same.

“No more bets, please!” the spinner yells. Once everyone takes their hands off the table, he spins the giant wheel.

“Damn, high roller over here huh? I’m down to my last ten bucks,” the gentleman on my right says.

“Not exactly. Just always wanted to do that. It’s super intense watching right now, though; that’s for sure.”

“I’m sure it is. Can’t imagine ever having the guts to do that myself,” he says while chuckling.

Bouncing all over the wheel is a little white ball. It lands in number slot after number slot, but because it’s still at top speed, it doesn’t stay in any number for more than a split second. After what seems like forever, the wheel starts to slow down, and the white ball stays in a number slot for almost a full second now before jumping to the next number. It seems to have completely stopped in a red square at first, but the wheel has just the tiniest bit of centrifugal force remaining. Just enough to push the ball into black 14 before coming to a complete stop.

“Yes, yes! Hell, yeah, I can’t believe that just happened!” the man who called me a high roller earlier screams joyfully.

Turns out he put his last ten bucks on black 14. Because there are 36 numbers on the board, this will pay him 36-1. He just won $360. No wonder he’s excited.

“Congratulations, man! Big win!” I say.

“Thanks. I’ve never won this much in my entire life. My bad, dude, sorry for celebrating in front of you like that when you lost all your money on red.”

“Not a problem; I’m glad at least one of us won. Besides, I actually went through with that. I have bragging rights now.”

“True. I like your optimism, man. Better luck next time,” he says.

I start to walk to the elevators, smirking. He thinks I’m an optimist. How ironic.

I reach the elevators and hit the up button. I wonder which of the eight doors will open first. It’s kind of a fun game to play because you never quite know for sure. I’m surprised they don’t have a way to gamble on it. Maybe someday they will. A middle-aged man comes around the corner, stumbling a bit. No surprise he is wasted out of his mind. His eyes have that glazed look of someone who has had far too much to drink and is possibly blacked out. He isn’t so much looking at me but looking through me. I doubt he will remember anything tomorrow.

One of the elevator doors opens, and we both enter. He moves to the corner, using it as a crutch so he doesn’t fall on his face. I have only been that drunk a few times in my life, It was a scary feeling, but somehow I always managed to make it either home or to the safety of a friend’s house. Funny how that works. I’ve heard that being blacked out is the equivalent of being comatose, yet somehow my body always seems to still work just well enough to get me to a safe spot to pass out.

I hear the beep of the elevator as it stops on floor 12. My room is 1205, which means it is right around the hall. I prefer having a room near the elevators. After a long night of partying, it’s hard enough to make it to the elevator, let alone walk to a room way far away from it. I reach into my wallet, pull out my little key card and stick it in the slot which turns into a green light. I can’t help but wonder when it was that damn near every hotel in America switched from keys to cards. Fricking technology! If somehow our entire computer systems went down like people thought they would in the “Y2K” scare of 2000, I’m pretty sure the world as we know it would collapse into a quick apocalypse, and good riddance when it does.

My room is freshly cleaned. The maids serviced it while I was gone all day. I throw my backpack from Sergio onto the bed. I have a bottle of whiskey in the fridge, so I pull it out. I take a good long chug of it. On a table next to my bed is a piece of paper and a hotel pen. I light up a cigarette, not caring that it is a non-smoking room. It’s the last one in in my pack, which is perfect. I grab the piece of paper and the pen; the cig stays perched in the corner of my mouth, and I begin to write.
Dear Friends and Family,

Please do not feel responsible for what I am about to do. It is not your fault. This world is shit, filled with nothing but pain and sorrow. I’m done with it.  There is no justice, no morals. It’s a world run by evil, greed and money. Nobody cares about their fellow humans anymore and will step over and crush each other to get ahead in life. I am convinced that only bad things happen to good people while evil people thrive. My whole life I have treated others the way I want to be treated, with trust, compassion, kindness, and empathy. It has gotten me nowhere. I am 35 years old, working the same dead end job I did in high school, at risk for a disease that has been called the worst disease known to man, and I have no wife or lover to help me through it. This is not where I was supposed to be at this point in my life.

When I was a young, optimistic man in my 20s, I had certain expectations for my future self, none of which have come to fruition. While I do not know whether or not I have Huntington’s, at this point I do believe I am symptomatic. After seeing Dad slowly decline and die over the last decade, I have decided that I will not go out like that. Even if I don’t have it, I will still have to watch my sister die of it, and I cannot bear to watch her suffer the same fate Dad did. The only thing I have ever wanted in this life was a good woman to share my life with, however short or long that may be. Sadly, at this point, I have completely given up on that ever happening, which makes this life pointless. I am truly sorry. I love you all.

Love,

Mickey Davis

 

A little long, but I think that will do. I snub my smoke on the desk. Who cares at this point? Add it to the credit card I used to pay for the room. I unzip Sergio’s backpack and pull out the pistol. I have no idea what model it is. It doesn’t matter; it will get the job done. I pull out the bullets and put them in the chamber. I learned how to do it by watching a YouTube video.  I stare at it while I sit on my bed, take another giant chug of whiskey, and then I grab it. I put the muzzle in my mouth. Fuck this shitty world. I put my finger on the trigger as the steel clanks against my teeth. It’s a weird sensation. In the back of my mind, a thought comes out. I remember hearing a story of the failed suicide attempt of a man who tried this same method. How he survived, I do not know. I think he somehow missed his brain. I’m not taking any chances. I move the muzzle of the gun to my temple, where it is a direct shot to the brain. Can’t miss from there. I am crying and shaking. Most people like to say a prayer before their impending death. I will not. If God does exist, He sure hates me; He has done nothing but torment and tease me my whole life with this disease. I press my finger down on the trigger and pull it….

 

No!!

 

I look up and see myself in a mirror before I can complete the act. Didn’t even know I had a mirror on the ceiling. How could I have missed it? When I see myself in it, I think, “Who is the poor maid that is going to service this room tomorrow and see my brains splattered all over mirror?”

Some things can’t be unseen. Something like this will traumatize her forever. Some poor maid, one who probably makes minimum wage and works 70-hour weeks to support her family, will have to see the mess. I can’t do that to her. My empathetic nature strikes again, but for once, it has helped me.

Jesus. Fucking. Christ! I can’t believe I almost did that. I open my hand, and the gun falls on the bed harmlessly. Oh, my God, OH, MY GOD! I almost went through with it. I almost fucking went through with it. I put my hands over my face and cry. I don’t know how long I cried, but eventually I come to my senses. First thing I do is grab my suicide note, crumple it up, and throw it in the trash. Then, despite shaking badly, I grab the pistol from my bed. It feels like it weighs 50 pounds. I don’t want to touch it. It’s poison. But I must. I unchamber the bullet and put it back in the backpack. I’m shaking so badly it takes both hands, but I stick the gun back into the backpack and zip it up. I strap the backpack on again. I have to get rid of this thing. I see my suicide note on top of the trash. Not good enough. I grab it, run into the bathroom and flush it down the toilet. Much better.

I practically run to my door and open it. Back in the hall again. I speed walk towards the elevators and hit the down button. After what seems like hours, an elevator opens, and I enter it. There is no one else on it, and I am glad. I hit the lobby button, and away I go. I look up. There is a mirror on the ceiling here as well, but that is pretty common for elevators. I see myself. I look scared and frantic, which I am. But I must calm down. I look too suspicious. I take a few deep breaths, and I feel a little more relaxed. Eventually the doors open. I quickly scurry out. I am speed walking past the roulette table I just played not ten minutes ago. It feels like days. Very few people see me. They are too engaged in their tables, and the few people that do notice me probably just assume I am running late for a flight and trying to catch a cab as quickly as possible. I don’t slow down until I reach the door.

I exit into the cool, crisp air. I know where I am going. Not far from the door is an alleyway with a giant trash bin. No one is around now. I take off running towards it. I open its giant blue door, rip off my backpack, and toss it in hard. It sinks towards the bottom, but that’s not good enough, so I start grabbing empty bags of trash and toss them on top of Sergio’s backpack, burying it completely. Then I shut the lid. I’m breathing heavily, so I bend down and touch my knees to catch my breath. It’s an old trick from my younger days when I was still competing in sports. Don’t know why it works, but it does. I do that for a couple of minutes. Tears are streaming from my eyes the whole time.

Eventually, I catch my breath. How long it took I will never know. I stand up and wipe my eyes with the back of my hands. I feel composed enough to head back into the casino. I begin to walk. There doesn’t appear to be anyone in my vicinity, and I am grateful for that. I think I look normal again, but without a mirror, I can’t say for sure. I look up as I walk. The sky is clear and beautiful. It really is a nice night in this fantastic city. Back to the casino door I go. I enter, and nothing seems to have changed. People are still gambling, drinking, hitting on cocktail waitresses, just having a grand old time. Nobody has any idea that not long ago I was going to be a dead man. My life has changed forever in the last 20 minutes, and for these guys, it’s like no time has passed at all.

I take a seat by a slot machine and put in a $100 bill. Why not? I already pissed away $600 for a product I never even used. What’s another hundred? As soon as I put in my money, before I even spin once, a cocktail waitress comes around, and I order a beer. Maybe my luck is finally changing after all. About time. I have always considered myself one of the unluckiest men on the planet, but after tonight, my perspective has changed. It has to. Tonight I am one of the luckiest men on the planet. How many people take their lives every day because they don’t stop at the last second like I just did? How many friends and family members are grieving the deaths of someone right now for that same reason? This act is often viewed as selfish. I can see why. People who take their own lives are freeing themselves from ever experiencing pain again, while their loved ones will suffer eternally. But the people who make that criticism have clearly never experienced severe depression like I have, and they most certainly have not seen Huntington’s disease at work.

Lucky for me tonight, I have chosen life, even if it was at the last possible second. No one ever said happiness comes easy. It seems like the majority of my life I’ve been dealing with one trauma after another, but as the lyrics to one of my favorite songs so poetically say, “It’s better to feel pain, than nothing at all.”

The time is now. I must gain my strength and go through with testing. When you have a 50-50 chance of inheriting Huntington’s disease, it feels like you have a gun pointed at your head with three bullets and three blanks. You just spin the damn chamber and hope you get lucky. It’s a terrible decision that no one should have to make, but 50 percent odds are a hell of a lot better than the near 0 percent I would have given myself had I pulled the trigger just minutes ago. My road to recovery will be long, and it will be tough, but damn it! I’m going to fight with every fiber of my being, and I won’t fail. I can’t. I owe it to myself, my family, my friends, and the countless thousands of other people affected by this dreadful disease to keep fighting. I have to believe that a cure is coming and that I will be alive to see it. Perhaps that is my purpose in life. It’s been a 20-year battle with that bitch HD. I am sick of fighting it, and no doubt I will lose many fights along the way. I already have. But rest assured, I will win the battle.  If I ever consider giving up again, I will think about this night, and most importantly, I will look up.

Your perspective changes immediately when you just look up.

For an interview with author Brent J. Walker, listen to the archived episode of “Help 4 HD Live!” at http://www.blogtalkradio.com/help4hd/2017/01/18/an-interview-with-brent-walker-author-of-look-up.

If you or a loved one are considering suicide, please call the National Suicide Prevention Lifeline. The number is 1-800-273-8255. Someone is available to talk to 24 hours a day, 7 days a week. Help is confidential and free. You can also chat with someone online and find resources on their website, http://suicidepreventionlifeline.org/.

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

Part Two left the narrator playing the slot machines, thinking about the fate of his father and contemplating his own risk for Huntington’s disease.

Look Up

Part Three

By Brent J. Walker

Would you look at that? This machine I’ve been playing has one of them old school levers on the side. You know, the ones that are the reason some people nicknamed slots “one armed bandits”? Wonder if it still works? Let’s give it a go…. I’ll be damned, it does still work. Pulling the lever is loads more fun than pushing a stupid button on a screen. From here on out, I am going to use it. Can’t believe it took me this long to notice it. I give it another yank, and out of the corner of my eye, I catch that petite blonde again. She appears to be looking at me, considering approaching perhaps? I must be mistaken, women don’t l approach men . . . ever. I never quite understood that. It doesn’t seem very progressive. This isn’t the 1950s anymore; men and women are supposed to be equals. So why in the hell does the man always have to approach the woman in situations like this? It’s much easier to be an attractive, shy woman than an attractive, shy man such as myself; that’s for sure. Women just have to hang out and look pretty, and eventually, a man will almost always approach them. I’m sure after time it would get annoying to get constantly approached by strangers mainly just trying to get in your pants, but at least they get multiple options of potential mates and can choose to reject or pursue them at will. That must be nice.

Now that I think of it, maybe this is why so many women end up dating terrible dudes. Think about it. What kind of dudes have the courage to approach strange women? Dudes that are aggressive enough to approach them in the first place. Emotionally detached enough that they are unfazed by any sort of rejection they may face by the girls they approach, and supremely confident to the point of narcissism. Three incredibly unattractive qualities that don’t translate well in real relationships.

Ah, shit. She is coming, and she is definitely smiling at me. Unless her boyfriend is behind me or something. She sits at the machine next to mine.

“Hi, there; how’s it going?”  My palms immediately start sweating profusely. My brain locks up briefly. But eventually I respond.

“I’m okay.”

“I don’t suppose I could buy a cigarette from you,” she asks as she starts to pull out a dollar.

“You can just have one for free.”

“Thanks,” she replies. I pull out my pack of smokes and push one up out of the pack a little bit so it’s easier for her to get. She grabs it and sticks it into the corner of her mouth. She reaches in her right pocket and pulls out an empty hand. Then she reaches in her left pocket, still nothing. She begins to pat at every pocket on her body. I know this game. I pull out my lighter and set the tip of her cigarette aflame.

“Thank you. I had a lighter earlier, but I don’t know where it went.”

“No worries. I lose about a lighter a day myself. Casinos must eat them or something.” What a dumb thing to say. Who says crap like that? Never mind, she appears to be giggling, so I guess I’m okay.

“I think you are right about that. So how’s your night going?”

“Well, I’ve been playing this slot for about an hour now on twenty bucks, so I guess I’m doing pretty well.”

“That’s actually really good. It takes me about 30 seconds to lose twenty bucks. These machines are rigged,” she tells me.

“I’d have to agree with you there. Imagine how awesome it would be to own a casino. Those guys must just make money hand over fist.”

“Sure would like to see one of their weekly paychecks. I bet the amount is eye popping.”

“Just imagine being able to buy anything you want, whenever you want. Talk about the American dream,” I respond.

“Yeah, I hate worrying about my finances. I’m Tiffany, by the way. What’s your name?”  She extends her hand; I shake it.

“Mickey! Nice to meet you, Tiffany. So are you on vacation, too?”

“No, I actually live here.”

“You must really like the heat then. I don’t think I could handle it for very long here. I live in Seattle. We rarely hit 90 degrees. Can barely imagine seeing upper 90s to 100s at all, let alone every day.”

“You get used to it after a while, just like anything. Seattle, huh? I hear it rains a lot over there.”

It’s a classic response. I’ve only heard it five hundred times in my life. But this chick is smoking hot. She’s thin, which I prefer, has beautiful blue eyes, which is by far my favorite color, and my God! Those breasts are perfect. I think they’re all natural as well. Never been a fan of plastic surgery; I prefer self-acceptance. Best of all, she’s actually talking to me, which never happens. So I better play it cool.

“It sure does, but it’s the months of gray skies in the winter that are worse. Rain I can handle, but the sun sets at like 4 p.m., which sucks.  I’ll tell you, though, there are few places in the world more beautiful than Seattle in the summer. Steady 70-80s, with a cool breeze and amazing view of the mountains and oceans,” I explain. I am shocked at how well this conversation is going right now. Maybe, just maybe, my luck with the ladies will change for once.

“That sounds amazing. So are you vacationing alone or with a friend?” she asks.

“Alone. I like to come here to clear my head. Been doing it once a year for a decade.”

“Makes sense. So you staying at this casino then?”

“I am. You can’t really go wrong with hotels in this city. They’re almost always roomy and super inexpensive, compared to other cities.”

“Are they? Are you sure you’re okay? You seem tense,” she asks. Damn! What happened? I thought I was doing really well here. No awkward silences or anything up to this point, which is unheard of for me when I am talking to any stranger, let alone a gorgeous, busty blonde with a super tight body. I thought I was hiding it well, but I guess not. She’s right; I am tense.

“I’m just a little tired is all.” It’s my favorite bluff. I use it all the time as an excuse to cover up my inadequate social skills.

“You look like it. You want a massage? Perhaps one with a happy ending? My rates are very reasonable.”

My jaw drops. Of course she’s a prostitute. Why else would she talk to me? Like everyone else in this city, she wants my money. How stupid are you, Mickey? My God, you are dense. Did you really think a chick like that just wanted to talk to you for fun? I am completely devastated and extremely embarrassed.

“Thanks, but no thanks. I’ve been in here far too long. I need some fresh air. I think I’m going to take a walk.”

She looks pissed. Time is money in her profession, and she wasted some of it by talking to me. I guess I looked like an easy mark.

“I see. Well, Mickey, if you change your mind, here’s my card.” She hands me a picture of herself with stars over the nipples and a phone number and walks away. “$400 an hour,” it says. Good Lord! No sex is worth a price tag like that. Even if her price wasn’t so large, I would still decline her offer. I’m old fashioned like that. Sex without emotional attachment or some form of love is a complete waste of time, in my opinion. I’ve never had a one night stand and don’t plan on it. I feel like a woman that sells her body for money must have had some kind of sexual or emotional trauma in her life, and I would only be taking advantage of that. It is, after all, a very dangerous profession. I know this is a biased and judgmental thing to say. Not all women that sell their bodies for money have had trauma. Some are free spirits that just like sex because it feel great, and it’s easy to do, so why not get paid, too? Especially in a city like this, where money flows like water, and you can make a pretty good living.  Not to mention experience, while desired by some Johns, isn’t necessarily a requirement. For the most part, the body knows what to do when it comes to sex. It is instinct; the desire to procreate is engrained into our DNA.

I think on many levels the secret to life is to find immortality somehow. I think in general, most humans want to be remembered for something long after their deaths. People often produce art, music, literature, and movies for this reason. Athletes want to win as many championships as possible and make their respected halls of fame so that they will be remembered forever in their sports’ lore. So what better way to live eternally than to have a child who will carry your genes on after your soul departs from Earth?

How exactly am I taking advantage of a hooker anyway? They provide the service of sex, which most people desire and need, and in return, they get money for it. Is that not mutually beneficial for both parties? Don’t we both win? Seems like we do, but for some reason it just seems morally wrong to me.

What the hell are correct morals anyways? The concept of morality is subjective at best. Everyone is raised differently and develops different forms of morality, depending on what kind of culture they grew up in.  So who I am to think my morals are somehow superior to anyone else’s? I try not to think they are; I try not to judge how other people live their lives, but sex, to me, isn’t just about pure physical pleasure. To me, it’s more about spirituality. It’s about two souls combining together as one on the highest astral plane possible in the only way humans know how to. This is my morality. It’s not necessarily better than anyone else’s or even correct, but it’s nonetheless how I live my life.

A walk actually sounds great right now. I am meeting someone soon anyways. Where am I at on this machine now? Down to just over $6 now. Didn’t realize how many times I pulled that handle while I was being distracted by that tramp, Tiffany. That’s good, though. Three more max bets, and I am finally done with this machine. Stoked I played as long as I did, but that $20 was bound to disappear eventually. Pull one, and I’m down to about $4; pull two, and I’m down to $2. Pull number three should do it. Wait! Back up to $4; two more spins now. I rip down that handle again. Well, up to about $6 now. Why is it that when you want to lose on purpose on these machines you keep winning, but when you want to win you keep losing? Are the slots designed to do that, or is it just Murphy’s Law? Screw it; this could take a while. What If I start winning again? I will never leave. I’m just going to cash out. “Congratulations, collect your money,” the machine reads. It always does that. Even if you’re only cashing out a penny. Super lame. I should sue them for false advertising. I collect my $6.32, chug the rest of my beer, and head outside.

That same bum I saw earlier is still there; he’s asleep or possibly in a liquor coma. Either way, I’m dropping my winnings in his little plastic cup. I hope he uses it for food instead of drugs or alcohol. But I guess I will never know for sure. Not that it matters. Money is the root of evil, as the saying goes, and boy, is it true. To hell with these rich prick CEOs of giant corporations. All they care about is money. They want more and more every year and will do anything they want to get it, including screw over their thousands of hard working blue collar workers such as myself by cutting our benefits, wages, and hours. They don’t care if I live or die as long as profits are up, so they can keep buying ridiculously expensive items like mansions and fancy cars. How much damn money do these people need anyways? People all over the world are struggling to keep a roof over their heads, food in their mouths, and keep up with their medical bills while these greedy bastards live the high life. How can they lack empathy like that?

I read somewhere that most rich people are natural sociopaths. When I think about it, I can see why.  Most people know what it’s like to live paycheck to paycheck, or to be a poor college student living off cheap soup, and they can naturally relate to the emotions and struggles of say someone living on the street. But how can someone who was born rich and stays rich their entire life possibly relate to that same person when they have never experienced what that person is going through?

I read on the internet that someone did some advanced math. They took in account average wages, inflation rates, housing rates, food rates, etc. of the current generation and compared it to the generation of their parents and determined that this is the first time in history that the current generation makes less than their parents, and by a significant margin.  I can see it. When I was a child, almost all my friends’ parents owned their own homes. But now, I don’t think I know anyone that does. Rich people keep getting richer, and poor or middle class people keep getting poorer. The discrepancy of the social classes in this country is off the charts. There has to be something we can do to fix that, or we are in big trouble.

I like to compare the billionaire CEOs of the modern day to those of Pharaohs centuries ago, and the average working class Americans to those of peasants centuries ago.  A peasant breaking his back to make his Pharaoh more wealth than he could possibly use in a lifetime. There is just one difference. Back then, when it got this bad, the peasants would revolt. They’d take up arms and either kill that pharaoh or run him out of town. So what do we do in this day and age since we are too “civilized” for such behavior?

People say you should vote. You pick the representative of your town, state, and country and let them make the laws for you. I disagree, because we have a flawed two-party system. Your president is either going to be a Republican or a Democrat. And why are those the only two choices? Because they have the most money, of course. I don’t give a damn if it’s a Republican or Democrat in office because both are corrupted by money. Before they are in office, candidates will say and do ANYTHING to get elected, but how often do they actually follow through with what they say they would do, if they get elected? Not to mention if they do make it to office, they are indebted to the corporate money that got them there in the first place. So they create laws that will benefit those corporations that supported their campaigns instead of creating laws for the good of all mankind. As far as I’m concerned, they can all rot in hell. I think there is somewhere in the realm of three dozen political parties that made ballots this year in the United States. We need free air time for all of them so we can eliminate our horrendous two-party system. Unfortunately, it will never happen because there is way too much money invested in the Democratic and Republican parties.

My brain is going on another tangent again. I need to slow it down and look up. A casino across the street is blasting off a mini fireworks show. Must be the top of the hour. Every hour, on the hour, on weekends, that casino does that. I wonder how much money it costs? People in this town definitely have more money than they know what to do with, for sure. At the same time, it is absolutely beautiful to look at. There is just something so majestic and awe inspiring about watching fire bursting into a dark, moonlit sky and exploding into showers of bright colors; it makes you feel free somehow.  I’m sure this little show draws in several dozen customers every time it starts. People walk by, see it, and think, “Well, that place seems cool. Let’s go there.”

I light up a fresh smoke and stop to watch the entirety of its five-minute or so show, then look at my watch. Currently it is 3:06 a.m. Sergio told me to meet him at his restaurant anytime between 3 and 5. Might as well head over there now; it’s not far. It’s a little hole-in-the-wall 24-hour breakfast joint called Pigs and Hens. Best breakfast joint in the city, or so Sergio says. Not that I know whether I believe it. I just met the guy last night, and he’s not exactly a standup citizen.

Pigs and Hens is about a block away from my current location, but the blocks are deceptively large in this city. The street is still bustling as usual, despite how late it is, almost 4 a.m. Not quite as much as it was an hour ago, but still a good turnout. Casino lights keep the crowded street bright, and it seems at every corner there’s someone dressed up in a costume. An Elvis impersonator is over there, and Marilyn Monroe close by. No surprise there. Those are two of the staples. I keep walking and pass by a group of people standing around looking at something. I come up closer and see that it is a gray-haired man with a deck of cards in his hands. He’s doing a mini magic show for a crowd that stares at him like a monkey in a zoo: mouths gaping, eyes attentive. I’ve seen it all before, so I keep walking.

Ah, here we go. This is more my style. There’s a man painted head to toe in silver paint. He is not moving, not even an inch. Damned if he doesn’t look just like a statue. I’ve seen this before, too, but I find it highly entertaining. People walk by him, oblivious to the fact that he is not a statue, and every so often, he jumps out and scares the crap out of them. Most people know this game; this isn’t their first rodeo, so to speak, but every so often, someone walks by that has no idea what’s about to happen. Their reactions are priceless.

I watch for a while, smiling and laughing, then I continue my walk. I see it now. Pigs and Hens, just around the corner, right smack in a dark alleyway. Classy joint! I see a group of four women in their mid-twenties or so walking out. One is a blonde wearing a hat in the shape of a dildo and a Bachelorette satchel; the other three are physically dragging her. Part of her satchel appears to be covered in something, but I can’t quite tell what yet. I get closer, and the smell hits me like a slap across the face. It’s vomit, of course. I cover my nose and mouth with the top of my shirt.

“Looks like someone had a little too much fun tonight,” I say, giggling like a maniac.

“Oh, fuck you.”

“Piss off,” two of them say in almost perfect unison. I am unfazed by their remarks as I continue laughing. Either that girl had too much to drink, or this place doesn’t have the best bacon and eggs in the city like Sergio claims. I open the door, and immediately, the strong smell of bacon hits my nose. Inside, the lights are dim, and the walls are a very plain, uninspiring white. There is a pinball machine in the corner, and a young man with a mop is currently wiping the floor around it. There are only five tables in the whole joint, and only one is currently occupied. Sitting at it are Sergio and a few other men playing poker. Each has a pile of chips of various sizes in front of him. Sergio is bald on top but has a long, thick beard, with flecks of gray in it and probably weighs at least 300 pounds.

“We’re temporarily closed, partner. Some little bitch couldn’t handle her liquor and blew her cookies all over the floor. Luckily, most of it got on that pretty little dress of hers instead,” an older man with glasses says, laughing devilishly.

“I got it, Grizz. This man is here to see me,” Sergio says.

He shakes my hand. “Don’t pay any attention to Grizz. Old bastard is just pissed off he can’t win a hand tonight. Ain’t that right, Grizz?”

“Yeah, yeah, I may be losing my ass now, but that means my luck is going to change soon. Law of averages, buddy.”

“Well hope in one hand and shit in the other, see which one fills up faster, as me old mum used to say. I got some quick business to take care of, fellas. Mind my cards and my money while I‘m gone. I got cameras all over this place, so if anything looks out of place, I’ll check them. You cheat while I’m gone, and I’ll kill you,” Sergio says. He’s not kidding. This is not someone you mess with.

“Step into my office, Davey.”

“Actually, it’s….”

“Stop right there. I don’t need to know your real name, Bucko.”

We head through double doors that lead to the kitchen. There’s a couple grills, a couple fryers and one lone fry cook. More than enough for five tables, I suppose.

“Take a break, Chino,” Sergio hollers.

Chino leaves, no questions asked. Sergio reaches under a counter, pulls out a backpack, and hands it to me. My palms start to clam up as I unzip the bag and look at the contents inside. Everything seems to be in order.

“You got everything you need in there, son?”

“Yes, sir. It looks like it,” I say.

“Excellent. Now, there is the question of my payment,” he says.

I pull out my wallet and withdraw five crisp $100s.

“Here’s five hundred for you,” I say.

“Yeah, about that. Turns out finding this product so quickly was a little more difficult than I previously anticipated. So I am going to have to tag on a 20 percent tax. That’s not gonna be problem, is it?”

I am a little caught off guard.  I try to calculate what 20 percent of $500 is, and it takes a little longer than it probably should, but eventually my brain starts working again, and I figure it out.

“No problem, I can handle that.”

I reach into my wallet again, pull out another $100, and hand it to him. I know I am getting gouged here, but what the hell am I supposed to do about it? He claps me on the back.

“That’s a good kid. Now take that backpack with you and get out of my sight. I don’t know what you are doing with that, and I don’t want to, so I strongly urge that you lose my name and this location. If you fuck up, and this somehow comes back to me, I will find you, and I will tear you apart with my bare hands.”

I don’t doubt it. He has arms as big as my thighs and hands so big he could probably strangle me with one tied behind his back.

“Not a problem. I already forgot where I am.”

“That a boy. I knew you had a trustworthy face.”

I strap the backpack onto my shoulders and exit the kitchen. Sergio’s three poker buddies are still sitting down around the poker table. I have no doubt that they didn’t touch Sergio’s stack of chips or his cards. In fact, I doubt they even looked in that direction. I open the door and enter the alley while once again lighting up a fresh smoke. The drunken bachelorette and her friends haven’t gotten far. They are on the side of the street trying to flag down a cab. Good luck with that, I think to myself. Not only is it illegal to catch a cab from the side of the street, but even if it wasn’t, what cab is going to pick up a girl with fresh puke on her dress? I could tell them that, but after my previous interaction with them, I know they don’t want to hear anything I have to say. Besides, they’re probably all a bunch of bitches anyways.

To be continued next Wednesday, February 8

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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We Need Your Help! Please Take Action Now!

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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She Will Dance

She Will Dance

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by Leah Amberly Barker

Originally published on Nov 21, 2016

One of my best friends bravely decided to get tested this year, and she ended up testing positive. After she shared the news with me, I began feeling angry, bitter, and depressed, but I chose to fight it in the form of poetry, and this was the result.

The poem’s title is fitting, as the harsh physical symptoms that set in are called “Chorea,” which is Latin for dance, as the non-stop twitching mimics.

This poem is for Anna, who waited 49 days for her results. It’s for everyone who battles with Huntington’s Disease. It’s for everyone who battles with mental illnesses, which I am all too familiar with, as it is written in my DNA.

This is “She Will Dance.”

She moved mountains the day when she made her choice.

In her 50/50 chance, she has been searching to find her voice.

Forty-nine days goes by faster than she had hoped

And the clock on her wall ticked louder and louder the faster that day approached.

For months, she pursued a hope that ran faster than her thoughts

But it became stuck within the endurance of time racing on her clock.

In sleep, hunger, and happiness, she quickly became deprived

And she couldn’t quite form a word for what she was feeling, but it was utterly close to terrified.

As certain as the flip of a coin, her future was unfolding

Forty-nine days goes by too fast, and she thinks back to what the genes in her dad could possibly be composing.

She looks into his eyes and sees the guilt that he tries to hide.

This disease will either take them both, or leave her with an undeserving remorse that she will also try to disguise.

The clock on her wall finally led her to this day.

Her lover grasps her hand in his, stronger than he was yesterday,

And she holds firmly in the other hand courage, unaware that it will never fade away.

But the doctor’s head hangs low, and her head starts to spin

As he apologetically claims “Positive,” she feels like a stranger in her own skin.

She doesn’t know that the tears she will shed represents the emotion embodied in thousands,

Though she feels weak, she will heal and move mountains.

Though she feels alone, she is unconditionally surrounded.

Though she feels afraid, she still grasps courage in her hand.

Though she feels like she is drowning, her feet are firmly planted on dry land.

She walks out the door with her head hanging low.

“Sweet girl, there are flowers blooming inside of you, and there is so much you don’t know.

The seeds that you planted long ago will now flourish more forcefully as you continue to grow.

You’re a fighter, a lover, a daughter, a friend,

And your purpose in this world does not change now-it begins.

Take my hand, and I’ll show you. I’ve been there before.

You can be the solid land, and I’ll be your shore.

You’re not alone, and above all, I want you to realize

That after the long shadows of night bring tragedy, there is a breathtaking sunrise.

It will come.”

And she heals herself, taking it day-by-day; with each breath, she’s revived

And the scars left behind show what she’s been through-and survived.

Though she is small, her sickness makes her a force to be reckoned with.

She knocks down every roadblock, and her target, she will never miss.

Though someday she will be robbed of her body, her mind, and her smile,

She will take back every minute of it, and make every movement worthwhile.

Her twitching, her falling, her spinning and her prance-

She will refuse to call it disease, so she names it her dance.

And dance she will, until her very last breath.

Her choking will be called singing, and relaxation will be the name of her brain’s death.

She embraces it now, and holds on to her hope.

The tears in her eyes will only show her soul’s kaleidoscope.

Look out world, because she will take every chance

To spread love, move mountains, live fully…

She will dance.

 

Listen to Leah perform her poem live here.

Leah says, “This is my first time performing live, so please excuse my nervous habits and the shaking of my voice.”

https://www.youtube.com/watch?v=OBb4yW9jDFg

 

You can follow Leah’s blog, “Capturing the Corners,” here: http://capturingthecorners.com/about/

 

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The Patient Advocate: Celebrating the Season of Giving

The Patient Advocate: Celebrating the Season of Giving

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by Katie Jackson, President/CEO, Help 4 HD

I would like to begin this article with some of my favorite quotes about being a patient advocate:

  • “Advocacy: To change ‘what is’ to ‘what should be’”
  • “Strong people stand up for themselves. But the strongest people stand up for others.”
  • My final quote is one that was introduced to me by one of the strongest patient advocates I know, Judy Roberson. This quote is used by Judy every time she speaks publicly, and because of her, it is now used by many HD advocacy groups. “Never doubt that a small group of thoughtful, committed people can change the world. Indeed, it is the only thing that ever has.”—Margaret Mead

Whenever I think of the power of the patient advocate, I think about the polio epidemic. This is an event that I have talked about for years when I speak about what a group of patient advocates can accomplish. What Franklin D. Roosevelt, Basil O’Connor, and Eddie Cantor, along with all the powerful advocates, did to combat the polio virus was astounding. A vaccination for the polio virus was the result of their efforts. The world was forever changed because of the March of Dimes advocates.

I started my journey as a patient advocate over ten years ago. I quickly learned that to be a patient advocate, you have to find a cause you are deeply passionate about. One that you can feel deep in your soul that brings out a power in you that you didn’t know you had. You must be passionate, compassionate, persistent, patient, resilient, and strong. You will endure disappointment and pain when your countless hours of work don’t go the way you planned.

The patient advocate knows what I am talking about, but the passion and strength we have make it so that we “won’t back down,” and we continue to fight and push on, even when things don’t go our way. We don’t have time to cry over a blow; there is too much work that needs to be done and too many people that are counting on us, so we push on.

There are those brilliant moments when you work so hard on a project, and it succeeds, and the change happens right before your eyes. These moments are what it is all about—to know all the work, blood, sweat, and tears have made a difference for the families you are serving. There is no better feeling in the world for a patient advocate than when you get to see the world change a little because of your efforts.

The patient advocacy spirit within the Huntington’s disease community is strong. This is a family disease, and families have been advocating for years and years and generation after generation. I have had the honor of meeting HD patient advocates who have been fighting for over 30 years. Being a patient advocate myself, I am here to tell you that at times it is exhausting. That is why I am always in awe when I get to meet the “pioneer” patient advocates. Their persistence and strength to keep going after so many years is truly incredible. Although there are still no therapies and no cure for our loved ones living with HD/JHD, can you imagine where we would be if it weren’t for those early advocates who fought so hard for our families to get support, care, and to find the gene that has affected families for hundreds of years?

Without the patient advocate, change wouldn’t happen.

I am so excited that we are using the month of December for “Help 4 HD Live!” to highlight the patient advocate. They call this holiday season the “season of giving,” and I can’t imagine a person in this world who is more giving than a patient advocate. They are truly the most selfless people walking this earth, fighting hard, not for themselves, but for those who can no longer fight for themselves.

We have decided to name the series of shows we’re doing in December “Celebrating the Season of Giving.” I would like to share with you a little about the four advocates we will be interviewing and a little about what they have done and are currently doing to advocate for our HD community.

 

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Lauren Holder, North Carolina

Lauren is an incredible advocate and person. Lauren has been advocating for our Huntington’s disease community for 10 years now. She has hosted many Huntington’s disease fundraisers. She started her advocacy journey by going to Washington, DC, twice a year to speak on behalf of the Huntington’s Disease Parity Act. She started educating law enforcement after her father went missing for 12 hours, and she was unable to get any help, due to the lack of knowledge about HD.

She has worked with NAMI (National Alliance for Mental Illness) to get CIT (Crisis Intervention Training) in North Carolina for law enforcement. Lauren was the HDSA North Carolina president for many years before she had to step down to help care for her father. In 2004, she was honored with the HDSA Person of the Year award. She has written a book about living with Huntington’s disease and is in the process of composing her second novel.

Recently, Lauren and her father’s story was featured in an article in Good Housekeeping. Lauren is a powerhouse, and we are lucky to have her voice telling her story and educating people about what it is like to live with Huntington’s disease.

 

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Havanna Lowes, Missouri

 Havanna is one of the most brilliant 17-year-olds I have ever met. Havanna visited Washington, DC, for the first time in June of last year. There, she was personally able to speak to four Congressional staff members about HD and the parity act. Havanna spoke to her senator from Missouri, and he signed the parity act in July.

Havanna has spoken at many education days. Just recently, she spoke at the Huntington Study Group meeting in Nashville in November. She is passionate about Huntington’s disease youth programs like NYA (National Youth Alliance) and HDYO (Huntington’s Disease Youth Organization). She has held fundraisers and has given talks about HD to her community.

Havanna says, “Advocacy is about telling your story to your community and getting people involved and informed.” Havanna is an amazing young lady who I believe will go so far in this world and will continue to be a champion for HD.

 

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Marie Clay, New York

Marie Clay has been a Huntington’s disease advocate for 20 years. Marie has educated many people about HD over the years. She has done law enforcement HD education, CIT, firefighter and first responder training, hospital training, and much more. She has spoken to many community organizations, like the Rotary Club, about HD.

Marie has been on Capitol Hill many times to speak up for the parity act, and recently, in September 2015, Marie spoke on a panel at the FDA (Food and Drug Administration) Patient Focus Meeting. Marie was able to tell members of the FDA about the challenges living with Huntington’s disease.

In 2008, Marie started a support group in Virginia Beach and has held many fundraising events.  Marie worked very closely with Sitrin, a care facility in New York state that now has a unit dedicated to HD/ALS. She has introduced many families to Sitrin, and everyone’s hope is that one day we will have more options like Sitrin available to our HD community.

Marie is one of only two employees that have been honored twice with the Volunteer of the Year award by GEICO Insurance. Marie has been fighting for HD families for many years, and we are thankful for all she has done for the HD/JHD community.

 

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Kinser Cancelmo, Massachusetts

Kinser became more involved with both HD and JHD after her daughter Meg passed from JHD after spending four months in the hospital, with doctors unsure about how to help her. Kinser lost her husband shortly after she lost her daughter.

While Meaghan was in the hospital, Kinser enlisted local news teams and radio stations to do programs to raise awareness for JHD.  The local radio station had Kinser on their morning talk show to speak about JHD.

When Kinser lost her daughter and her husband just a couple of months apart from each other, she decided it was time to work on starting a nonprofit business in memory of her daughter, “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation, Inc.”  Kinser says, “I was appalled at the lack of medical services and places available for children/teens her age that had illnesses that the medical community couldn’t handle.  Especially JHD.  I wanted to raise money for researchers to continue working on medicines and hopefully a cure for this horrible disease.  A group of my friends, who are now Board members of my business, began working on a fundraiser to raise these funds to send out to UC Davis in California.  The fundraiser was held in September 2016, raising more than $20,000.”

Kinser is a board member of her local Massachusetts Chapter of HDSA.  She is involved in attending meetings quarterly and helping with the HD walks around the state, Education Days, as well as many other events that the chapter sponsors.

Kinser recently took Meaghan’s service dog, Dixie, and finished putting her through a pediatric training therapy class. Dixie passed the test so that she is now an official K-9’s for Kids therapy dog.

Kinser is an incredible woman. One can only imagine how immensely hard it would be to lose your husband and your little girl only two months apart from each other. Kinser is a survivor and is taking what she has learned to help others. We can’t wait to see what the future holds and the changes that will be made because of the “Meg’s Fight 4 a Cure, Juvenile Huntington’s Disease Foundation.”

Celebrating All the Patient Advocates

Help 4 HD International would like to thank all the Huntington’s disease patient advocates out there. Without you, change will not happen. So keep fighting, my friends, for the next generation and all the generations to come. Let’s hope that one day our efforts become a paragraph in a history book of “how they used to live before they found the cure for Huntington’s disease.”

 

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HD Youth: We Are the Future

HD Youth: We Are the Future

By Ashley Clarke

They say there’s a reason for everything.

So there must be a reason my life is affected by Huntington’s disease.

And that is the reason for this blog.

My name is Ashley. And I have a story to tell . . . .

If you have read some of my previous blogs, you will know that I have been caring for my father for a number of years; in total, Huntington’s has been in my life for around 10 years. It is 2016, and we have amazing organizations around the world which offer support to young people worldwide.

At a young age, I was told my father had an incurable disease which I had a 50 percent chance of inheriting. This was a tough pill to swallow; there were no answers for my mother, brother, or me on how to cope with the news or what Huntington’s was/is. There were, on the other hand, plenty of horror stories, and this is what I filled my mind with.

I was obsessed with Huntington’s disease and what it would do to me. I was obsessed with it taking over my life and taking control. I had to be in control! Control was something I did not have and still do not have. I cannot control what will happen in my future; I do not know if I will make it to 50. I understand that no one knows what will happen tomorrow, and the most frequent thing which would be said to me would be, “You could get hit by a car tomorrow,” because getting hit by a car is the only thing that can kill you, right? There are millions of diseases and millions of different ways to die, but I have a 50 percent chance that my way could be because of Huntington’s disease.

At the age of 16, I decided to organize a fundraiser for Huntington’s Disease Association Northern Ireland. They had been supportive of my family in the first few years of Huntington’s entering our lives again, and I wanted to give something back. I was obsessed. This night had to be perfect. I held it at our local hall and had a friend come and be the DJ. I got tickets printed and sold them for £10, I think; friends and family donated raffle prizes; my father’s late brother donated a lot of tools from his hardware store; and all night, people were coming up to me, giving me large amounts of money. The bar alone donated £250. In the end, we raised £1500, which was overwhelming! I got up on stage and made a speech. I thanked everyone for coming, and there was no surprise, but a fight had broken out, and I told the entire room to wise up, grow up, and remember why we were here, and what we were supporting.

As said before, I was obsessed. I had spent months planning this night. I had made a presentation to be played on the night about Huntington’s disease, and watching it now, I’m not entirely sure all the information on it is correct; there’s even a spelling mistake! A friend of my dad’s made DVDs of Dad and his friends skiing on Lough Erne over the years, before his plane crash. Once the night was over and the mini bus I had arranged to bring people home was done, it was time for Mum, Ryan, Mary (a family friend), and me to head home to our house in Killylea. We got home, and everyone headed to bed. I sat in the living room with the light off watching the DVDs of the man my father used to be, crying hysterically because I was losing my dad, and I didn’t know what to do next.

I felt lost. I was lost.

I am now 23, and it didn’t exactly get any easier. There was no support, doctors, social workers, and health professionals. Everyone was concerned about how Dad was and how the disease was progressing, and I understand that more than anyone. I watched him every day deteriorate and continue to do so. Carers are important, too, though. As much as my father is my life and his care and well being are everything to me, my mental state is important as well. My future is important.

Having a youth programme for the young people affected by Huntington’s disease is vital. Society needs to look after young people’s state of mind and ensure that they get the information they need and not scare stories. Most important, young people need to get the support they require, trying to cope with the fact that a loved one suffers from a disease which is incurable and the fact that the same disease may take their life.

We need to support the young people and show them that Huntington’s disease does not define you; it is not who you are. It may be a large part of your life, but that’s just it, a part of your life, not the entire thing.

It took me many years to realize this, and through #imnotdrunk I would like to get this message out to the world.

You can still do everything you want to do, go to university, travel, and live your dreams. Huntington’s does not have to control your life; you can still be positive and live the life you choose. Take control. If you want to get tested, then that’s your choice, and don’t let anyone take that away from you; if you do not want to find out if you have inherited the disease, then that’s also fine. Whichever your decision may be, let it be your own, and continue to live your life how you want to.

You can follow Ashley’s blog here: https://kyraashley.wordpress.com/

You can follow her on Facebook here: https://www.facebook.com/hdawarenotdrunk/?hc_ref=SEARCH

You can also follow her on Twitter at #imnotdrunk

This blog originally appeared on Ashley’s blog on October 11, 2016.

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