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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Category: humor

Make your house fair

Terri Reinhart

...as you are able. I'm glad the song continues with this line. I'm still in the process of simplifying and clearing out everything I don't use, can't use anymore, or just simply don't need. It feels so good to do this, I will have to be careful so I don't give away things I need. Simplifying can become addicting. 

The challenging part of taking on a challenge like simplifying my life while managing a challenging health disorder is the challenge of having enough energy to do something more challenging than just simply making it through the day. Then there's the challenge of trying to pace myself so I can do challenging things without crashing and without getting totally pissed off because I can't do as many things as I used to do and everything I do is just a little more challenging than it used to be.

Today is the first Sunday of Advent. I haven't even finished writing down my Thanksgiving thoughts. 

When our children were younger, I would have made an advent calendar. I would have stayed up half the night to get it all done so it was ready in the morning. We would have also made our wreath, which was only difficult because we didn't get our tree so early and had to scramble for greens. These last few years, I've forgotten about the wreath until it came time to light the candle at dinner. Tonight, I hastily found a votive candle and holder so we could celebrate the beginning of Advent. We lit the candle, but forgot to say the verse. 

Though my spiritual beliefs have gone on a wild roller coaster ride over the last ten years or so, the traditions are still important to me. The days are getting shorter. It's time to be more introspective. Time to acknowledge the cycles of the earth and what they can teach us. The first light of Advent is the light of the stones, stones that live in seashells and crystals and bones. It's time to be thankfully aware of the basics: the ground we stand on, the bones which hold up our physical bodies, the foundation and bricks that hold up our house. 

Another basic part of our foundation we can find in a classic Advent hymn, written in 1928 by Eleanor Farjeon: 

"People look east, the time is near for the crowning of the year! Make your house fair as you are able, trim the hearth and set the table. People look east and sing today, love the guest is on its way."

Part of our foundation as human beings are other human beings. Certainly our family is our real foundation, hopefully a strong one. But the song tells us to look out from our homes. Get your house ready and make sure you have food to share. Who is our guest? As a Catholic school student when I was very young, I learned the guest is Jesus, of course. As a young adult I learned the only way to see Jesus was to see his divine light in every person.

Okay, so this is enough of a challenge for the first week. Nothing too difficult. Just get my house cleaned and tidied, make sure to have enough food on hand so if any of you decide to stop by, I can fix you a cup of tea and a snack, and make sure I am centered enough to see the divine light in everyone I meet. 

Back to tidying... as a former Catholic school kid, I have a few interesting challenges when it comes to cleaning. Even after all these years, I still have prayer books, prayer cards, an old scapular, some broken rosaries and, what I think belonged to my uncle, a wooden crucifix that is broken with Jesus' metal body tied on with string. Throwing anything such as these in the trash or even recycling them makes my inner Catholic school kid shudder. We learned (really) that if we did anything to harm the Jesus statue, we would be harming Jesus. I'm thinking of putting all these things in a basket and leaving them at the church door.

I'm sure those old superstitious beliefs are not taught to Catholic children anymore, so I don't feel bad about clearing my house and my psyche of such oddments. In my house and in my beliefs, it's time to get back to basics. It's all I have energy for, anyway.

The first light of Advent is the light of the stones.

 

Twisted

Terri Reinhart

It's Dystonia awareness month and I'm supposed to write something so people will learn about and start to recognize this totally weird and somewhat unpredictable disorder. Considering it is, like Parkinson's, somewhat of a designer disease and affects each person in a unique way, it can be difficult to explain. Some of my twisted friends are posting videos. After all, a picture is worth a thousand words and a video is worth at least a thousand pictures going by very quickly. (Actually, that's film, but it sounds good.)

I'm not real comfortable doing selfie videos, so I'll write and do my best to not use a thousand words. A disclaimer before I start: there may be some of you out there who will say, that symptom isn't dystonia, it's Parkinson's. For this, I will apologize in advance. Sometimes I can't tell which is which. There may also be a few people who will disagree with my weird sense of humor. I won't apologize for this. It's how I stay relatively sane...or at sane enough that my family and other relatives will put up with me.

So, here goes...

Dystonia comes in many forms. These are just a few:

1. The Rebel - the whole body is functioning normally or what generally passes for normal these days. Yup, it's all good. Except for the big toe on one foot which is standing at attention, perpendicular to said foot. The rest of the toes often follow its lead. The opposite of the Rebel would be the Shy Toes, which curl under the foot. Either way, they're not fond of shoes.

2. T-Rex at Dinner - when the elbows decide to attach themselves to the sides of the body, limiting arm movement considerably. Why this happens more often at dinner than at other times of the day is unknown. Eating is definitely a challenge. Good for you if you're dieting. Not so good if you're hungry and your family finishes everything before you get the first bite all the way to your mouth. 

3. Wink, wink - It's really the muscles in my face pulling to my left side. I'm not flirting with you, I promise. This is different from Blink, blink, which is a Parkinson's thing that happens when we don't blink, blink enough.

4. Involuntary Pliés - My legs want to dance, sometimes without telling me. Another way to describe this is to picture yourself on strings, like a marionette. The puppeteer lets the strings go slack suddenly, then pulls them back up again. It's kind of cool. Really freaks out people, especially going through security at the airport. 

5. Twist and Shout - This can be one body part or many at once - often (for me) caused by a startle reflex. Someone drops a spoon in the kitchen, you never know what I'll do. My arms may twist up onto my chest or they may flail outward (often when I'm holding a sharp knife - which is why my family is very careful not to startle me), my feet turn in, I may do a #4, might walk backwards or sideways with great force until I hit a wall or counter. The shout part generally includes a lot of swearing.

6. Bar Fight Gif Mode - You know those annoying gifs that show a very short video over and over and over. That can happen to us sometimes. We become gifs. The neck jerks to one side and down as though someone is slapping you, over and over. The abs contract as though you're being punched in the stomach, over and over. You can't find the pause or stop button and you're stuck in this mode for some time. (My record so far has been about 7 hours) It's not only painful, it's boring.

7. The Works - All, or most of the above, happening at the same time. Generally referred to as a Dystonic Storm. It would be like being fully conscious while having a grand mal seizure. Like being beat up, relentlessly. 

Mostly, it's a weird disorder where our bodies seem to be arguing over which part is making the decisions. It's like having cerebral palsy - part time - and the diagnoses are sometimes confused. With many people, dystonia is extremely painful. We don't have all these symptoms all the time. Sometimes.. occasionally... well, once in awhile, we even look sort of ...NORMAL! 

Just don't hold your breath. We'll come out with something entertaining and twisted again soon, don't worry.

Drafted

Terri Reinhart

It's been difficult to find time to write lately and even more difficult to figure out what to write about. So, I looked through all the drafts of articles I've started and thought perhaps they could inspire me to do something new. Sometimes I come up with a title and nothing else.

Here goes:

Armchair Reactivist: My intentions were good, not just because I wanted to write an article, but because I wanted to be a real political activist and get involved with our city politics. I went door to door gathering signatures on petitions and later, went door to door again to deliver leaflets for our city counselor's election. 

My stamina being not so great, I decided I was better at being an armchair activist, or, when it comes to social media, an Armchair Reactivist. Being a reactivist isn't nearly as productive or useful as being an activist and it has sometimes gotten me into awkward spots. I'm sure there's a lot more I could write on this subject. If I finished, it would be deep and scholarly and point out all the ramifications for our society.

Tomorrow, Tomorrow, I'll do it Tomorrow:  I decided this was the best title I've ever come up with for an article that has never been written and probably never will be, like the one above. The fact this has also been my mantra for everything over the last six months or so makes it an even more appropriate title. Catchy, isn't it!

It's Enough: This follows the other two. I can't remember exactly what I had in mind here, whether I'd had enough or whether I had to decide what I was doing was enough. It could be either, depending on the day. 

It's back there in the gray matter somewhere. We need to simplify, really simplify and not just give it lip service. This doesn't just pertain to stuff, though there's a lot of stuff needing to go, it's also how we live. My medications, over the years, have either sped me up or slowed me down. Finding a middle ground hasn't been easy, but at least I know now I don't have to try and cram as much living into my days and weeks as I possibly can.  If we go slower, do less, we experience more. And that's enough.

Labels and Identity: This was going to be one of those really important articles which would go viral on the internet and, maybe have 4 or 5 people actually read it. (For me, that's viral) This is something else I've been thinking of a lot. 

When I was in high school, we liked to talk about how we didn't want anyone to label us. Working with children who had disabilities and challenges, labels were often what helped get help for a child. Sometimes a label helped with funding. I'm also involved with our LGBTQ community. They have recently added more labels - LGBTTQQI2SA. This might look awkward and seem a little bit label heavy, but I get it. These labels are helping people understand their unique identity. I wish these labels had been around for friends in my generation.

What I remember from working with child observation is: you can have labels that help free an individual or labels that box them in. The most important label is: This is a unique and uniquely beautiful human being. Know the others, then forget them.

There's so much more on this subject, it needs to be a whole book. Someone else can write it. 

And after all this, I'd undoubtedly summarize all of my thoughts into a wise, but witty ending paragraph, bringing everything together. I'd probably connect these ideas to the experience of chronic health challenges and try to say something inspiring. Instead, I'll just copy and paste and tweet about it.

Tomorrow.  

 

 

 

To cry or not to cry - that is the medication

Terri Reinhart

While Parkinson's disease can take away so many of our abilities, there are other skills it seems to enhance. The ability to cry is one of them. We can cry in any situation, any place, in front of anybody. We can cry while watching comedies or commercials, listening to a lecture on mathematics, or seeing a cute puppy. 

My natural skill in this area was advanced anyway. After my diagnosis, I could have been a superhero, if crying could be considered a super power. Unfortunately, crying has not yet been accepted by the Board of Animated Mutants (BAM), Panel Of Weird Writers (POWW), or even the Board of Associated Super Heroes (BASH). Yes, it remains, to this day, an unappreciated skill at which I am embarrassingly talented. 

Until recently when a change in medication took me from Kwazy Wabbit mode to embracing The Way of the Tortoise. 

There were a few odd things that came along with this medication change: dry mouth, throat, nose, and eyes... and nightmares. I didn't notice all the changes right away. I was moving so much slower and my nervous system had calmed down to where I wasn't reacting so strongly anymore. Little did I know, it had also taken away my one and only superpower. (Okay, that's an exaggeration. I still have my ability to turn into the Human Torch every time I get a hot flash. Yup. They're still hot enough to roast marshmallows.)

Last week, a dear friend of mine died. I was sad, but I didn't cry. I didn't cry when I was told or when I read the obituary. I didn't cry at the memorial, even when they played a song my friend had once sung to me. Usually I feel embarrassed when I cry. On the day of the service, I was horrified! What a terrible friend I must be to not even shed a tear! I pulled out a kleenex and dabbed at my eyes, pretending I was tearing up. There just weren't any tears. 

This upset me enough, I came home and emailed my neurologist, asking if this could possibly be happening because of my new medication (Amantadine). She wrote back, starting with "My, you ask the most interesting questions". After she researched a little, she found this indeed could be an effect of the meds. The timing is right.

I'm not going off the Amantadine, but I'll try to stick with a low dose. Without it, my dystonia can decide to run the show. The Amazing Pretzel Woman is not among the accepted Super Heroes, either. It's weird to know my ability to cry can be changed by a medication. Even if I can't change this, it's good to know there's a reason for this mystery.

And, at least I don't feel like a terrible friend anymore. 

 

 

 

Mrs. Reinhart Goes To Washington

Terri Reinhart

It might look like I'm working, but in reality, I haven't been able to concentrate on doing much reading and studying today. Tomorrow morning, long before any sensible person is out of bed, I'll be on my way to the airport and off to Washington D.C. 

This has been planned for awhile. While I'd like to say I had very noble reasons for applying to review funding applications for clinical studies, the trip to DC was the real incentive. I love to travel. I love seeing new places and finding my way around a new city. I enjoy meeting and talking with people from all over the place. I love to travel. Because I am leaving at such an early hour, I'll get a chance to explore a little. Maybe I'll see the White House? I love to travel.

Maybe if I say it a few more times, I'll stop being nervous. I LOVE TO TRAVEL! 

It didn't work. This trip is just a little bit different from my usual travels. For one thing, Emma won't be coming with me. I'm going all by myself. Solo. No one to pick up my shoes for me when I almost leave them behind in security. When I arrive in DC, there won't be familiar Ronald McDonald House staff to greet me. I'll have to buy my own lunch and dinner.

It's a work trip, of course, and I have to be prepared to give my presentations on Thursday and Friday. Yes, I'm nervous. Not only will I not know anyone, but this is a PROFESSIONAL meeting. People are wearing "business casual" clothing. I finally consulted a former colleague and friend to guide me in finding something that didn't look like middle-aged retired kindergarten teacher. I can do this... and hopefully, not squirm my way through the meetings. The others on the panel will be scientists, doctors, and other experts. And me. What in God's name made me think I could do something like this? 

What if my Parkinson's and dystonia kick in big time? It does when I'm nervous. What if I start walking wonky, my balance is off, and I start slurring my words? What if they think I'm drunk? Okay - do I have my "I am not drunk" card with me? Check. 

So, yes, I'm nervous. Instead of reading and preparing, I've been panicking. I've been to the store twice already getting toothpaste, tooth brush, and deoderant. The hotel experience is one I haven't had in years. I couldn't remember what I needed to bring. Almost... I almost wrote a friend to ask whether I needed to bring soap and shampoo. How many pens do I need to bring? Will I need some paper? Where are the socks I had hanging on the clothesline? What if I run out of deoderant?

My family (Chris and Emma) gently reminded me that, though neither of them had ever been to DC, they were fairly certain I could find a store there. 

I'll be fine. I've got my clothes, my notebook, my computer, my phone, all the various cords that go with phone, computer, and scooter. I have "The Last of the Dragons" by E. Nesbit, my little book of Welsh phrases, and my knitting. I'll admit, the last three are security items. Don't laugh.

I'll be fine... as long as I remember my shoes after I go through security. 

Pray for me? Let me think about it.

Terri Reinhart

I'm not embarrassed by my Parkinson's. I don't want sympathy because of it. I don't generally say much about it, but when an old classmate of mine was taken aback after I told her I was retired, I was suddenly self conscious. Not wanting her to think I had retired because I didn't want to work, I told her it wasn't my choice, I had left teaching after I was diagnosed with Parkinson's disease. 

She looked at me earnestly, put her hand on my arm, and said she was sorry. I was confused at first. Sorry I was retired? Oh. That's right. I have Parkinson's disease. She asked if she could pray for me. 

It was my turn to be taken aback. Not that I have anything against prayer. There is a lot I question about religion and spiritual matters, but holding an individual in warmth, interest, and love is not something I question. Whether or not there is a God listening in and acting on their prayers is secondary.

Regardless, I have not always been comfortable with the Christian idea of prayer. When our daughter did so well in the NICU after being born at 28 weeks gestation, a colleague told me she was sure Emma was doing well because so many people were praying for her. Something in me snapped. And... the little girl who died in the NICU the day before? Did she die because not enough people prayed? I know all the standard Christian responses to this and I still struggle with it.

For now, I have my own request. If anyone wishes to pray on my behalf because I have Parkinson's disease, please do not ask God to cure me. I do not want a miraculous, magical cure. You're welcome to ask God to nudge the researchers in the right direction for a scientific cure. A miraculous, magical cure would only affect me. That's not fair. If there is a cure to be had, it should be for everyone. I'm sort of a spiritual socialist.

I stumbled around before answering my old classmate. Yes, of course she could pray for me. I just wanted her to realize I see my Parkinson's as much as a gift as anything else. There are so many people I wouldn't have met, so many things I would never have been able to do, and so much I wouldn't have learned if it I didn't have Parkinson's. Those of you who read my blog know this already. I hope she will forward a message of gratitude with her prayer.

On the other hand, my husband has become an expert in the Heimlich maneuver. I'm not sure he looks at this as a gift, so... if anyone is listening up there, I could use a little help with the whole chew, swallow, breathe thing. 

(I'd even take the magical miracle cure for this one.)

A Word or Two for the New Year

Terri Reinhart

I had just about decided not to even try making New Year's Resolutions. How many have I kept? Ever? Not many. All those good intentions of exercising daily, eating right, and accomplishing things which, never accomplished, now seem utterly ridiculous and unimportant.  There's enough to do to get through each day, why complicate matters with unrealistic goals?

Yet, it is a new year, a new beginning, and it's hard not to feel a deep urge to freshen up my life a little or give myself a kick in the butt (okay, that's actually not possible, but you get the idea) and decide to be a better person, in one way or another.

My inspiration came from Jeanne Nichols, owner of ModMood, a retro furniture store in Wheat Ridge. In her blog, Jeanne talks about how she chose single words as her resolutions. The first year, she chose one word, "Downsize", and kept it in mind in various aspects of her life throughout the year. It made me think. If I had to choose one word for a resolution, what would it be? I finally settled on this one...

SPACE

space.jpg

Make space in our home. Be aware of how much stuff is accumulating and give things away. Recycle. Most of all, be aware of what we don't need to buy. I want to only have as many things as we need or are important to us for some reason, but not more than we can care for. If something ends up in a box in a closet, it's not needed. Treasure the important things, those that can't be replaced. My treasures are old family photos and letters.

Make space in my doing. This is harder for me, especially now when I have so much to do, but I've made a start. I've decided to cut down on the number of different kinds of crafts I do. This will help with the stuff issue, too. I've gone back to knitting, my first craft, because I've done it so long, it's relaxing without having to think about it.

Make space for people. Be aware of how I listen - or don't listen to my family and friends. Oh, and get my hearing checked. Chris is going to insist, maybe because I asked him why he said he was going to vacuum the driveway (...back into... not vacuum..). Make space to spend time with people who are important to me. Write letters.

Make space in my friendships. People come and go in our lives all the time and there's so much we learn from each other. Let friends in, let them go, it's part of the natural flow of time. I value all my friends and tend to want to connect with more people more often than is practical, considering my time and energy, and I also feel guilty if someone tries to connect with me and I'm too busy to respond right away. Making space doesn't mean we don't care for each other. 

Make space in my thinking for new ideas, people, learning, and admitting when I'm wrong. I should get plenty of practice in the last one. Make sure there's plenty of space without computers and phones.

Make space to care, to be grateful, to give back. A lot of people have given us so much of their time, their resources, their loving care. 

Oh, and make time to watch a little Star Trek and Dr. Who now and then, just so I can have some perspective on SPACE. .... and time and relative dimensions ... and metal monsters.

What's your one word resolution?

 

 

Christmas Pudding - A Holiday Adventure

Terri Reinhart

Cornelius, let's arrange a signal for you to give me.

If it's really an adventure, give me a signal. Say a word.

Say, like 'Pudding'.

All right, Barnaby. For adventure, 'Pudding'.”

(from the Matchmaker by Thornton Wilder)

 

“So, what are you making?”

I was caught by surprise and didn't even look around. I didn't have to. It had been some time since Mo, aka Marshmallow the Opinion Fairy, had come to visit, but I would have known her voice anywhere, anytime. I wasn't going to answer, but she had startled me and I'd almost dropped the pot of rice.

“Horchata. Don't talk for a minute, okay?!”

I heard a small hrrumph sort of sound and miraculously, it was quiet. I made Mo sit while I buzzed the rice mixture up in the blender then poured it through the sieve. Only when it was done, did I turn around and greet my old friend.

Mo: Old friend? Come on, I'm not so old.

Me: Don't get huffy, you know what I mean.

Mo: So, what's up with the horchata? It's not your usual Christmas treat.

Me: I know, but it sounded really good this year and I wanted to try making it.

Mo: Meaning, you've never made it before? What time is everyone coming over?

Me: Not till 4. You're welcome to stay.

It was nice to see her again, even though I knew she'd be challenging me at every turn. Already she was questioning my horchata. Really.

Mo: Thank you. I think I will stay. What else is for dinner? It smells good.

Me: Vegetable soup, chili, salad, squash and apples, carrots and green beans.

Mo: Sounds awfully healthy.

Me: Well, there's pumpkin pie, too. I made it with coconut milk and gluten free cookie crumbs in the crust.

Mo: What about your truffles? You always make truffles for Christmas.

Me: Not this year.

Mo: What? Why?

Me: We've been busy. Emma and I have been to Chicago twice in the last five weeks, we had lots of parties to attend, and then everyone got stomach flu. Besides, I'm trying to keep to a healthy diet.

Mo: And making your family and friends suffer along with you.

Me: I doubt they'd want truffles right now. Anyway, I'm kind of on my own here. Everyone else is still recouperating. Got to keep it simple.

Mo: Which means making horchata?

Me: I want something special and a nice cup of hot, spicy horchata sounds really good.

Mo: Hot? I thought it was served over ice.

Me: I know. All the recipes I've found say to serve it cold, but I've only had it hot. It can't be too difficult, can it? All I have to do is heat it up. I'm going to put it in the crock pot and keep it warm.

Now, if you wouldn't mind stirring the soup, I'll pour this into the crock pot, then start getting the dishes out.

We worked together for awhile. I was grateful for the help and the company. To be fair, my family had helped with a lot of the preparation earlier in the day, cutting up vegetables and such, but for the last hour or so, I had been working alone. Now, with Mo's help, everything was coming together. She even dusted the living room furniture.

After another hour had passed, we decided to give the horchata a taste test. I lifted the lid of the crock pot and dipped the ladle into the creamy hot mixture. The ladle came up out of the depths with a “gloooop” sound and what was inside looked like congealed oatmeal. I almost cried.

Mo: Uh, oh. What happened?

Me: I don't know, but I certainly can't serve this up to anyone.

Mo: Which is too bad, considering you've got about 3 gallons of it.

Me: There's got to be something we can do. Any inspirations?

Mo: Sorry. Wrong fairy. The Inspiration Fairy is my 3rd cousin. If you want my opinion...

Me: I'll ask for it. Until then, unless you have something nice to say or can work a miracle, don't.. say... anything.

Mo: !

No, she didn't start swearing. Something started to escape, but she clapped her hand over her mouth just in time. I was pleased. I still have an effective teacher look.

A few minutes later, she crept quietly up and tapped my arm. The next thing I knew, she had flown through the air backwards and had landed on top of the dog. I turned my teacher look on the dog and Mo escaped with only an affectionate lick. I helped her up.

Mo: What did you do that for? I didn't even say anything.

Me: I'm sorry, Mo. My meds are wearing off. It's not safe to surprise me right now. I never know what my arms will do when that happens.

Mo: Okay, okay. Give me a towel. Is it okay if I suggest something?

I handed her a washcloth and nodded. It was the least I could do.

Mo: Make rice pudding. It's congealing anyway, and it smells really good.

Me: Brilliant.

So, together we looked up a recipe for baked rice pudding. My mixture was congealed to the point where it wouldn't pour into the baking dish. I added a little bit of almond milk and a couple of beaten eggs. This was going to work!

We were ready. Dinner was done, the house was clean, the buffet table was set up, and the pudding was in the oven. Time to rest a little. I poured some Bailey's into a thimble sized cup for Mo and we sat back and chatted for awhile. When everyone came, I turned to introduce Mo, but she had vanished. Maybe she was afraid of my grandchildren.

Mo: I am NOT afraid of your grandchildren, I'm just not feeling very social right now.

Her voice had come from the direction of the Christmas tree. I looked over, but couldn't see where she was hiding. Once everyone arrived and was served, I put some dinner out for Mo on the fork of one of the branches. We had a wonderful evening. The little ones played and opened presents, and the rest of us talked together.

All too soon it was time for our evening to end. We said Merry Christmas and hugged and watched everyone as they went out into the cold night. When the door was locked and my family had drifted off to their various corners of the house, Mo came out from the tree.

Mo: How was the pudding?

Me: Pudding?

Mo: You know, the stuff you put in the oven to bake?

Me: OHMYGODIFORGOTALLABOUTIT!

After startling, Mo began to laugh and laugh. I went in, turned off the oven and opened the door, fully expecting to find a rice loaf, a rice brick, or just simply rice hardened onto the baking dish. I took it out and did what the recipe told me to do. I checked for doneness with a knife. For some reason, Mo collapsed in giggles again. To my surprise, the knife didn't bounce off, but it didn't come out clean, either. I dipped a spoon in the pudding and it came out with a glooop noise and the stuff inside the spoon was the consistency of congealed cream of wheat.

We were making progress.

Not deterred, I spooned some into dishes for Mo and me. Then I added a little Bailey's. I think we just invented something new. It's not bad.

Just don't ask me how to make it.