For People With HD/JHD & Their Caregivers
By Lauren Holder
Figuring out what to get someone who has Huntington’s disease can become more and more difficult as the disease progresses.As promised, here is a list of great gift ideas for a person with HD/JHD, as well as some ideas for the caregivers! Happy Holidays!
- Subscription to Netflix or Hulu or Audible
- Weighted blanket
- iPad or tablet
- Mighty Mug – https://themightymug.com/
- Gift certificates for getting nails or hair done, etc.
- Gift certificates for ice cream or lunch
- Weighted pens/pencils
- Adult coloring books with markers (Osborne Big Color by Numbers Book, Books Dream Big, Draw Bigger, Draw, Doodle Design & Doodle Imagine, Draw) You can find these on Amazon.
- “Tickets of Love”
This is a personally-made booklet of coupons that is filled with little gifts the giver (child or adult) wants to give the recipient. For example:
- This coupon is good for a free foot rub, or
- A free hair wash and style,
- A free nail-coloring session,
- An afternoon walk,
- A picnic lunch,
- A reading from a favorite book, out loud,
- An afternoon ride to the ocean (lake, park, etc.)
Other Great Ideas
- Chapstick (a good stocking stuffer item!)
- Slipper socks with ‘treads’ on the bottoms
- Funny, colorful socks
- Gloves, winter hat, and/or scarf
- Purifying Salt Lamp
- Essential oil diffuser
- Motion detector lights inside and outside the home
- Electric toothbrush
- Memorabilia from favorite sports team(s) (i.e., jersey, t-shirts)
For the Caregiver
- Gift certificate to a local cleaning service
- Hire a Virtual Assistant for an hour or two every month to help with staying organized.
- Create a break for the caregiver! Schedule it, make the plans for them, oversee the help (i.e., getting a manicure or having lunch with a friend).
- “Host the holidays” – Decorate the inside and outside of the home, take care of the planning or the cooking, etc.
- “Tickets of Love” (See above.)
***Please check out https://dailycaring.com/the-11-best-holiday-gifts-for-caregivers/ for these and other ideas for caregivers!***
You can also listen to Help 4 HD’s archived program about gift giving on BlogTalkRadio. Listen to Katie Jackson and Lauren Holder’s discussion at http://www.blogtalkradio.com/help4hd/2018/12/12/gift-giving.
Help 4 HD Announces Huntington’s Disease Awareness Month Programs
Help 4 HD Announces Huntington’s Disease Awareness Month Programs
By Sharon McClellan Thomason
“We are excited this year about our programs we will be launching in the month of May for HD Awareness Month,” says Katie Jackson, president and CEO of Help 4 HD International Inc. “This year, we spent a lot of time thinking of things we could offer our community during the month of May.”
Beginning today (May 1), we are making available to the HD/JHD community, free of charge, an “a-WEAR-ness” package. The package includes wristbands, buttons, a keychain, a window decal, and brochures. We are also offering a set of six communication boards. You may order all or any portion of the package. Items will be shipped at no cost, but because of the prohibitive cost of international shipping, the package will be available only in the United States.
“We started creating projects like communication boards and window decals to bring awareness about what Huntington’s disease is to first responders and the general public when approaching a car with one of our loved ones in it,” Jackson said. “We do hope that our community finds value in the items that we came up with.”
The window decal alerts first responders that there is an individual with Huntington’s disease on board and lists some of the symptoms that might occur with that individual.
A-WEAR-ness items can be ordered at https://www.research.net/r/Order_Form_May_2018.
Something we are extremely excited about offering for the first time is our long-anticipated award-winning JHD documentary, The Warriors: Fighting the Incurable Juvenile Huntington’s Disease. In exchange for a donation to JHD research, you may receive a DVD or a download of the documentary. Levels of donations are:
- $15—receive a DVD of the documentary
- $10—download a permanent copy of the documentary
- $3.99—download a copy of the documentary to keep for 48 hours
To make a donation and order your copy of the documentary, go to https://help4hd.org/events/the-warriors-fighting-the-incurable-juvenile-huntingtons-disease-is-now-available/.
Another feature of HD Awareness Month is a special radio program every Wednesday in May. Programs air live at 4 p.m. Eastern/1 p.m. Pacific and may also be heard in our archives. To listen, go to www.blogtalkradio.com/help4hd.
You can also go to our website and download a copy of a Proclamation establishing May as Awareness Month. The Proclamation can be customized for a particular city, county, or state. We encourage as many people as possible to consider doing this for your hometown, county, or state! The template can be found here: https://help4hd.org/events/request-a-proclamation-from-your-city-or-county-for-hd-awareness-month/
Finally, a new article will run in The Huntington’s Post each Friday in May. The articles will offer information and insights into rarely talked about symptoms of HD and JHD, including gastrointestinal issues and hypersexuality.
A couple of years ago, Katie Jackson came up with Help 4 HD International’s motto, “Help 4 HD International is in the trenches with the people because we are the people.” Jackson says, “We are your community, living in homes that are impacted by HD every day. We love our community and want to bring as much support and resources as we possibly can. We are your grassroots organization started by families and continue to be run by families. We hold tight to our grassroots values and know that we are fighting to be the last generation to live with Huntington’s disease and Juvenile Huntington’s disease the way our generations and past generations have been forced to do. We hold tight to the hope that one day soon a viable therapy or the cure will be found. Till that day, we continue to fight beside you, proud to be a part of a community as compassionate, resilient, supportive, and strong as our Huntington’s disease community.”/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */
“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.
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 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.”
“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/* Custom Archives Functions Go Below this line */ /* Custom Archives Functions Go Above this line */