Good News About Chorea in Huntington’s Disease!

I just found out in this article on Facebook saying that there is a new supplement out there called Teva and it’s supposed to stop chorea in Huntington Disease patients! For those that may not know what chorea is, its the uncontrollable  movement of the arms and legs that Huntington’s Disease I remember growing up with my dad when he first started moving randomly all over the place, flailing his whole body around he just couldn’t control it at all. It would happen a lot during the day. Pretty crazy huh? It was intense! I hated seeing him like that I could never do anything about it so I just sat and waited for it to stop hoping that it wouldn’t get worse, but it always did. Now that he’s in the later stages of HD he doesn’t seem to move around as much, but he still does get chorea from time to time, so any help would be so grateful.

I always prayed that someday there’d be a way to stop that, to stop the chorea, but now there is! That gives me hope! I knew everything would be ok someday and I guess I was right. I had to wait a long time, but this is just an amazing miracle! I hope these pills, these supplements work. It would be pretty amazing for a person’ s quality of life, for my dad’s quality of life, for anyone with HD! Fingers crossed!

There is always hope! Hope they can make enough for all of HD patients to use!

If you want to check out the article, it’s right here:

http://www.businesswire.com/news/home/20160531005496/en/Teva-Receives-Complete-Response-Letter-NDA-SD-809

It’s great news! I am beyond happy right now, after what happened to my dad yesterday and seeing this just makes me feel like things will be ok!

God definately works in mysterious ways! I had no idea that I would come across this today, I mean I was just scrolling down Facebook on my labtop at home and I found it! I guess things happen for a reason, I guess it was all meant to be! This just makes me feel so happy! Its funny because when I was younger I always hoped for a way to stop the movements, to stop chorea for good in HD, but I never imagined it would actually happen!  Now people are actually making strides against it, that just makes me feel like someday very soon they will come up with a cure for HD! All I needed was a little patience and a lot of faith, but it worked!

Patience is the calm acceptance that things can happen in a different order than the one you have in mind.:

Hope everyone had a great Memorial Day’s Weekend!! Blessing to you all!

-Paula

Prayer Really Can Change Things!

This morning, my mom got a call on her phone and there was this split second that I knew it was the nursing home that it was about dad. I saw the look on my mom’s face and just for a moment my heart stopped. I started thinking that something bad happened to him and that he ended up in the hospital. Well, I was half right. It was the nursing home and it was about my dad. He did end up in the hospital, but my mom said that they just needed to change his feeding tube. Once I heard that I could finally breathe again.

When we get calls like that, it screws me up because I always think that they’re gonna call someday and say that he’s not ok that he’s in the hospital and that he’s not gonna make it.It reminded me of the times when I was younger and my dad  would end up in the hospital after falling down the stairs and hurting his arm or when he would fall in the bathroom and he hurt his arm and the ambulence came to my house. That scared the crap out of me! Every time I’d see him walk down the stairs, I’d watch and pray that he wouldn’t fall. It was pretty intense.

So, while all of this was spinning through my mind, I took a moment just a tiny moment of my time, took a deep breath in let it out slowly and shut my eyes ever so gently and prayed. That’s it that’s all I did and ya know what? it worked! I feel so much better now! He listened to me, he heard my prayers and helped me through this and I know that my dad will be ok because my mom is gonna be there with him. I also think its great because it was just his feeding tube that they need to fix. It could’ve been something worse like pneumonia, he’s been hospitalized with that before so I’m so happy that it wasn’t that. Did you know that lots of people with HD end up with pneumonia?  So, maybe just maybe God’s been looking out for my dad all along. I’m glad my dad is ok and that’s enough for me.

So here’s a poem that I’ve written. I feel like expressing myself right now through the written word:

Prayer

Prayer, it changes, it heals, it inspires, it feels

it makes the unreal real

I’ve prayed when times seemed to fail

Life may not make sense or may fall apart

But, with prayer and God in my heart I know I can do anything!

Life is not easy, its crazy, unfair, it drags us down, makes you think twice

But there is hope, the kind of hope that lives right inside of us

HD you have taken much from my life, my family, my dad, my grandpa, my aunt

But you cannot stop me from living the life I was always meant to live

So, I will not let this hinder, or hurt me at all

I brush it off with love and healing and compassion

And instead live a life of faith

I know God is with me right now and also too with my dad and my mom

He’s watching out for them, with guardian angels by their side

I know things may not always go the way I want,

But I know in my heart that God is with me and that is all I need

Its all I need to have peace in my heart once again

To rest and relax knowing that he’s here with me

As I pray this simple prayer within my heart

You wanna know what gets me through?

Its prayer, prayer in the simplest of ways,

Just to say thanks to God for listening to me

For giving me faith and giving me strength,

The strength I need to get through the day

And that my friends is all I need to stand up once again & face all of these things.

-By Paula Martin

Purpose

Lately I’ve been thinking a lot about my purpose, my reason for why I’m here in this world, why I’m doing this blog in the first place why I write why God put me here? I know it was for a reason I can feel it in my heart, but other times it just feels so out of reach somehow, like I’m still trying to figure out what that really is.That’s life though. I’m only 26 years old, but I’ve been through a lot. It’s amazing that I’m still standing here today, there are so many times I could’ve given up, quite, thrown in the towel. I did do that a lot, but lately, I’ve been seeing the world through a different colored pair of eyes, one that is full of light and hope, when before while growing up I only saw things through darkness, bitterness, and pain, and hopelessness.

It was pretty bad, but the one thing that got me through the one thing that kept me going was God. I’m not ashamed to say it its just true. He’s the reason why I’m still sitting here the reason why I keep going because he gives me purpose in my life he gives me a reason to keep going even when things seem to be going wrong. He always gives me a new sense of dignity a purpose a reason to keep going. My whole life the one thing that I have always been good at is coming up with stories, I daydreamed a lot and came up with some silly short stories I never imagined it would bring me here, to this moment where I’m actually writing this blog, another blog about my dog Cinnamon, and where I’ve been writing my first novel. Its a dream come true! I never thought I’d ever get to this moment, I felt so stuck so lost, sinking deeper and deeper in a  black hole with no way out. That light that surges through me now, is why I write.

Lately, I think the one thing i have to remember and keep to heart is that writing is my passion its a part of who I am, so I’m going to keep doing it no matter what! That is the reason I get up every morning so exited to bring on the day, its because I write to give myself a voice, to speak out and share what I truly feel in my heart, that spurs me that keeps me going because in a world where I never felt comfortable expressing myself I could do it through my writing. That is where I feel the most alive, when I’m writing a short story, this blog, my funnydogmoments blog, and also my first young adult novel that I’ve been writing called Grace, that is where I feel like I can let the words flow out through my fingers and turn it into some inspiring story to share with the world.

Writing though isn’t my only passion its not the only thing I love to do, I love music too so of course my day consists of singing my lungs out to some songs on the radio or sometimes I even sing Christian music. It’s uplifting and fun to listen to. I also feel like there’s another side of me, the one about Huntington’s Disease, the one I’ve always had a hard time sharing with people. So just know that there are tons of different passions to persue. I also have a passion for reading. I love books I always have and I always will. There’s just something about turning the pages of a good book and not being able to put it down. That feeling you get when you really get into the characters lives and want to know if they live or die. its an amazing feeling! Reading is something that I’ve loved doing since I was a kid. I just loved sitting around at night reading all types of childrens’ books, such as Dr. Seuss, Brown Bear Brown Bear, Amelia Badellia, The Very Hungry Catepillar, and my all time favorite,   and also in 4th grade I’d like to make a shout-out to one of my favorite teachers Mr Razo who truly gave me my love of books. He introduced me to The Harry Potter books and all of the best Caldacot winner books and Newbery Award Winners, such as The Giver, Holes, Number the Stars, and so on and so on. Those stayed in my heart forever, which later inspired me to want to write one of my own books. Now, I still read many different types of books, but I have recently just been focusing on dystopian novels, sci-fi,  fantasy,  books turned into movies, and also young adult. I love those types of books they’re so thrilling and they always have something to say about the world around us. Some of my favs are  1984, the Invisible Man, Farenheight 451, The Fault in Our Stars, The Perception Trilogy, The Divergent, Maze Runner, and The Book Thief.

Reading in turn helps with my writing and was something good I had in my life something positive even though I had been going through HD, these types of books taught me that it was fun to read, to have a good imagination, to speak my mind, and to do what I loved and to stand up for what I believed in and that life would get better. I have taken all that I’ve learned from some of my favorite novels and writing tips online into the things that I write and it works. Sometimes when I’m done writing it blows my mind about how far I’ve come. I am still in those beginning writing stages of my life where not everything is good and its not always my best writing, but I’m getting it out there and one day very soon I know in my heart that I’m going to finish my novel, rewrite it and rewrite it til it’s done have it edited and then have it self-published online. I can’t wait!

Life is too short so I’m living out my dreams now, don’t ever wait to find your purpose your reason for living. Follow out your dreams and with a lot of hard work and dedication you too can be happy doing what you love! It’s not about money ok! Just do what you love and do it now and just know that it is never too late to start out and living out your dreams! Just have faith it will work out, maybe not when you think it will, but in God’s timing it will work out just when you need it most. Sometimes all it takes is a lot of patience and a lot of persistance, but if it’s what you really want in life, if its what you are meant to do, then isn’t it worth it just to try it out!

Hopefully one day, there won’t be any HD anymore until then, I’m going to stay hopeful and not give up no matter what. There is always light in the midst of darkness all you have to do is find it. Until then, I feel like I have a renewed sense of purpose in this world now, I don’t feel as lost anymore,  I pray every single day for my family, my dad, and all the other HD warriors out there who are still battling this disease themselves. I feel happier, lighter, and again its all thanks to God. Without him I would be lost! Remembering that my purpose, my reason for being on this earth is to share my story with others through writing is my gift.  I hope this story, this blog post helps at least one person out there struggling with these things.

One of my favorite quotes, that I have posted up in my house right now is:

“Keep looking up!”

I dare you all to do that! Keep looking up keep going there is a reason why you are all here and if you find it run with it because that is what God intended you to do with your life. He wants you to find who you really are and to be happy doing what you love!  Remember, whatever your purpose is try it out I assure you God is right there with you every step of the way. He was there for me and he still is.

-Paula