Another Tip on How to Cope with Huntington’s Disease

 

Hey guys I’m back again and I have another tip on how to cope with HD.

  • In college, high school, junior high, or even in elementary school, join marching band/start playing an instrument or join an awesome extracurricular activity like football, baseball, soccer, basketball, etc whatever you are interested in the most, whatever you love doing whatever you are passionate about and do it!

Music to me has been a inspiration in my life. Back when my dad had HD, music was the one thing that got me through. I was a part of marching band and it changed my life. It was one of the hardest things I ever did, but it brought me out of the darkness and back into the light. I played the flute, i started back when I was in elementary school and kept going til high school. That was one of the best decisions I ever made because it forced me to stop worrying so much about what my dad was going through, and instead helped me focus on something positive, something amazing.

So, just to let you know, if you are dealing with HD or if you have someone who has HD in your family and you’re in high school or junior high, take up a hobby that yo love. This helped me. Music was my passion, so I took up marching band, I took up playing the flute back in elementary school and stuck with it all throughout junior high and high school and it saved me, it was my escape my one way to survive such a terrible It helped me become more confident in myself and make a bunch of friends. Everytime I stepped out to play one of our field shows at competitions each year, all of that worry, stress, and heartache of the disease that I had been feeling I left it behind the second I stepped on the field, and it made me feel free. It made me feel like I didn’t have all those problems, like suddnely the second I played my flute, the pain went away, I put it all of it all of the emotions I felt into the music I played and that was a great stress booster for sure! I always felt so much better doing marching band because it gave me something else to do with my life, something worthwhile something positive that lifted me up in times of despair and hopelessness. It gave me something fun to look forward to, a good challenge to endure.

If you don’t like band again do something else not everyone is going to like doing the same thing that’s great. Try football, basketball, choir, or baseball, soccer, work on the newspaper if you like to write, or join a book club or join chess club, whatever you prefer. My sister did tennis! She loved it and she still does it now! That is definitely a good stress reducing kind of contact sport. Try it out! It works! It helps to have that one thing that you love to do because if you don’t if you keep putting yourself more and more into the disease, if you keep thinking about it too much it will destroy you. I am very very blessed that I got to be apart of the Noble Regiment at my school, I wouldn’t trade it in for the world. We were this tiny band that got to compete against schools from around Southern California and we were beating a lot of the bigger bands. It just goes to show, if you work hard at something, and you do it because yo love it so much, high school doesn’t have to be so bad, HD doesn’t have to be so bad, so if you do choose to try music

Also, along with this new tip on how to cope with HD, I wanted to share this poem I wrote a little while ago about music. Enjoy!

Music

Music it fills the heart, fills the soul,

it touches the hurt, the wounded, the misfits,

It makes me feel like I can do anything,

it soothes the soul, makes things new

It gives me hope, the hope to pull through

it gives me strength, strength to stay together when all seems lost

Music is what keeps me sane, it helps me believe,

See things I never thought I’d see

It gives new perspective, and new life

its beautiful, real, open minded, and it surges through my body,

flows through my heart and soul like an angel watching over me from above

It heals and it appeals to so many and yet so many of us still feel so alone.

Music lifts me up, it gives me faith that everything will be ok

That, that is what gives me strength, that is what gives my heart rest

Knowing that gets me through the day, when things seem to go astray

When my life seems to fall apart it pulls me back together

As I sat, I sat playing my flute

The emotions, all of my hurt and pain

just poured out, out of my heart and into the open

this, this moment of vulnerability, this is why I played,

this is why I had such a deep deep passion, appreciation, and love of music itself

It was like all those burdens just flew away off into the horizon and disappeared off into

the purple hue of the sunset

It gave me true happiness and joy

Music restores, it helped me and it can help you I know its true

So, give it a chance

It can help when you go through any hardship in life

All you have to do is give it a chance

Just think, think what could happen if you let it in?

Miracles can happen if you just have faith, that things will get better

Have some relief, you are not alone.

Find a passion, a passion you love

Share it with someone, let it burst free

Then, when you do it, when you let it be

The music will guide you and you will be at peace.

It can be depressing thinking of all the negativity out there in the world,

But, music brings us through it all

Music makes u forget, it’s an escape, a way to just be happy

Its an expression of the self to the fullest

Music is like what it feels to be truly happy,

To be truly content with who you are

It speaks to your soul,

It makes things brand new, it ignites, it excites, it lets u know that u are not alone,

It lets u know that others feel as you

That is what makes music so amazing in the first place

That it brings us all together, together listening and enjoying the same songs

It tears down the walls,

the deep, deep casisms we put up to keep people away,

And builds bridges, builds beautiful amazing bridges instead.

So listen to music

Let it soothe your heart and soul,

Let it magnify you,

Let it breathe in and out of your body and surge thru your heart,

Let it touch you so much that it moves you

It moves u to do the unthinkable,

To do the unimaginable, the impossible

To gain confidence in yourself

Also in giving you this power this grace that only music can give

If u truly do this, it can set u free in ways u never imagined

It can help u realize you are so much more, so much more my dear friend than you ever thought u could be.

So fly, let your passions ignite your soul and don’t let your life drag you down

Instead, let music guide you to the beat of grace, love, and peace.

-Paula

 

I hope you all have a great day!

Remember: music can help you heal from all of this or joining a group that you’re passionate about. DO what you love, something positive to get you through all the hardships that HD has to offer. And things will get better all you have to do is have hope!

 

Strong Enough

This morning I woke up feeling lousy, sleepy, tired, hopeless, my insomnia just doesn’t seem to be getting any better. I was almost in tears and didn’t want to get out of bed, but I still got up and started my day. I felt so angry because I’ve been trying everything to get some good, decent sleep, but it just isn’t working still. I woke up prayed to God for help, asking for strength to get through the day and to help me with this. I just asked him to save me, to heal me, to help me through this burden, this pain.

Then as I walked downstairs, I heard my mom singing this song that I like and it got stuck in my head. Don’t you just hate it when that happens? I kept singing it to myself over and over again in the kitchen while I was making some breakfast and the more I sang it, I just felt happier happier, lifted up like God was there with me, trying to help me through these hard times in my life saying that everything would be ok. That just gave me so much hope!

The song, if you want to know is Strong Enough by Matthew West, and the part that my mom was singing when I walked by her was this simple phrase: “I can do all things through Christ who gives us strength!” When I heard her, I stopped walking, looked over at her and smiled, looked up at God saying, wow thank you so much!

What a coincidence huh? I guess, but I knew it was God giving me the strength to get through the day. Instantly, my frown turned upside down and I was happy again. He was reminding me through one of my favorite songs that I can do all things through Christ who gives us strength. Its true, he gives me the strength to work through my fears, my hardships in life, and gives me the strength to keep going when all else seems to fail. In that moment, in that very moment he touched me and changed me again. He helped me forget my problems with sleep and instead gave me hope that it would all work out, all I needed was to hear that song and it healed me. All I had to do was remember that God is with me wherever I go and that he’d give me strength and now I feel so much better, now I can start my day off with a clear conscience and a good loving God by my side who loves me for me and will never leave me when I’m scared or afraid.

I know this post isn’t about HD or anything, but I just wanted to share this story with you to give you hope! There were moments when while my dad had HD, that I felt like this a lot and God was the one who pulled me through it each and every time that is why my faith has grown so much and that is why I feel like even though I’ve been through the darkest of times, God is still lighting my way when it seems too dark outside to turn on the light.

God does work miracles he does it for me every day single day! So just know that if you’re going through a rough time in your life, you are not alone! God is with you so remember that and I assure you things will get better!

It’s songs like these like from Matthew West or Chris Tomlin’s song Good Good Father, or Francesscai Banestteli that really lift me up. All I do is start singing these songs or listening to them in my car while I’m driving and sing my lungs out or I sit on my couch and listen to these types of songs on Pandora or Youtube and they help me out a lot. Their messages are amazing and they can touch you if you give it a chance. When I start singing those songs or when I pray in the middle of the night or in the morning, he is always there to listen. Its funny because when I was younger I prayed, but now I have been trying to pray even more, not just through the difficult times, but through the good times, too! By doing that, my life has changed so much for the better.

Sometimes life just gets so overwhelming, I know how it is. If that ever gets that way for you I hope this song can help you through the day like its helped me today!

So, here it is, The Strong Enough Music Video from Youtube.com:

Check it out and see what you think. Really listen to the lyrics and sing to it if you want to!

Enjoy your day! Hope all is well! Blessings to all on this awesome Thursday!! Just think, a few more days and its the weekend!

Can’t wait! I’m going to this Fishfest Concert in Orange County this weekend with my sister and two of my aunts and my cousin. Its gonna be amazing! It has a lot of Christian singers, like Matthew West!

-Paula

 

 

 

 

Three More Tips on How to Cope with HD

More Tips on How to Cope with HD:

HI everyone! Here’s a few more tips on how to deal with HD. Again just try a few of them out, it can really help a lot through the hard times:

4. Exercise

Find out what types of sports you like and try it out my sister plays tennis every night that is a fantastic stress buster or if you like baseball play that, or soccer, whatever it is join a group or play with some friends.

Do a yoga class or meditation.
I have personally done both of these and I assure you that it if you really stick with it, you can start feeling happier, more energized, more refreshed, and a lot less stressed. It feels so relaxing especially if you do deep breathing exercises along with it. It helps in times when you feel frustrated or you start overthinking things and start feeling overwhelmed. I need to do this more often. At times, I forget to do yoga or I don’t plan it in but every time I go back into it helps me focus and be more present.

If you can’t take a yoga class you can always do it in the comfort of your own home too. Try some videos on Youtube.com. If you’re just starting out with yoga, do beginners yoga first, start off with the basics and then slowly work your way up to the more experienced levels.

There’s this good website to try out if you want to do some free yoga at your house for free that I use:

www.grokker.com (Its great check it out!)

Trust me I know yoga may seem hard at first, but its fun. All you need is a yoga mat, some good light clothes, and drink plenty of water afterwards.

Do Just Dance. It’s fun and its great to dance at home on the Wii. I have 3 different types of them and they always make me laugh and have a good time. You can even do it with your friends or your family. My sister joins in sometimes its great! I just stared doing the Just Dance 16 one and it has some good songs on it. haha

Whenever things just get too much to deal with go outside for a nice walk around the neighborhood. It’s great it clears your mind! It also helps to have a dog! If you have one take it out on a walk. I have a cute dog and I walk her around all the time. There’s something about going out there with the wind hitting your face, all your cares just wash away and it doesn’t seem so bad and when you see the horizon off in the distance or seeing the sun shining through the clouds and you walk around remember how special your life is and how amazing you are and remember why you’re here and what you want to do in life and then your problems don’t seem as bad.

Try jogging, riding a bike, hiking, swimming, or go for a walk on the beach or walk through a good bike/horse trail. There are tons of things that help.

5. Read or Write in a journal

Reading to me always gave me something fun to read even when my life was falling apart. It gives you hope, it helps you know that you’re not alone and it gives you the strength to keep going.

Pick some type of genre that you love, it could be anything from romance to mysteries or fantasies like The Lord of the Rings. For me, it was sci-fi and young adult books that I loved most. I love the way those books are written. Try reading Harry Potter books too. I know I’m a nerd, but I don’t care because these books really helped me through some of the worst times in my life growing up with HD it taught me to never give up and to stand up for myself and it was just plain funny at times cracking me up. Just being in different worlds like The Wizarding World or Hogwarts and following Harry’s journey through his life growing up and stopping Lord Voldemort really lifted me up and gave me faith that my life too could be magical and that it could be worthwhile too if I kept going!

If you like reading, join a book club so you can talk about some of your favorite books with others. Connect with people and learn and grow.

Also start up a journal. Sometimes just writing your feelings out, just putting them down on paper can be the most therapeutic thing of all.  I did it all the time. I have so many journals now filled with all of my stress from HD. You can freewrite, writing down anything you feel at the time with no judgement, you can write down all the things your grateful for in your life right now, you can write down goals and dreams and passions you wish to follow in your life. The sky’s the limit! Just do it!

Try it and if it doesn’t work for you that’s ok, I don’t always like to do that either, but it works. Just get all your feelings out, its better than bottling it all up inside.

6. Look at some Inspiring Quotes Online

Sometimes on a bad day, all you need are a few quotes to lift you back up again. This helped me a lot back when i was dealing with my dad’s HD, but it also helps me now with the aftermath of living that life. It was hard and it gave me PTSD, but most of all depression, and I know there’s a lot of people that suffer from those things these days and sometimes you just feel downright sad for no reason and it sucks, so maybe just take my advice scroll down facebook or yahoo or google and type in inspirational quotes or quotes about hope and faith and the next thing you know you are feeling better. It gives you the strength to keep going. It did for me, and still does!

Join pinterest.com and start looking around for some good inspirational quotes or things that you love. After a little while it starts sticking in your head and instead of focusing on the negative aspects of life, you’ll start thinking positively.

That’s it for today! I hope a lot of this helps you all very much!

Doing these things while also going through HD may help you out when you least expect it. So, try some of these tips out.

There are more tips to come, but for now enjoy these and have a great week! God Bless!

-Paula

3 Tips on How to Cope with Huntington’s Disease

Let’s face it, Huntington’s Disease can be hard to deal with. I grew up with it so I know. I understand how negative you can get how much it can pull you down until there’s nothing left, and you start feeling like your falling down a black whole with no way out, but there is hope!

It took me a long time to realize that it doesn’t have to be that way. If you see it in a new light, a new perspective, it works. For me, what truly helped me cope with my dad having HD the most was staying positive about it. That is not always easy. There are still days when I get downright depressed about all of this, times where I lose hope, with those moments i want you to know a few tips that have gotten me through. Mind you they may not work for everyone and that’s ok. These are just a few examples. Maybe you can come up with some other things on your own list of things that can help you. I have a lot of tips to share, but for now I’ll only give about 3.

Three Tips to Cope With HD:

1. Pray

Praying is the number one thing to has gotten me through some of the most difficult times of my life. When I was younger, I used to cry myself to sleep every night praying to God that something might work, that something would change. I always felt better after doing that. Now, because I did that when I was younger, now that I am a bit older now in my 20s I am so much closer to God now. I have been praying to him all along and now I’m in a better place. So, I know a lot of you may not even be Christian or religious so that’s ok, but if you are I highly recommend it because it changed my life, my way of looking at the world around me. I was so afraid so scared, but now I see that life doesn’t have to be that way anymore. Its beautiful and meant to be lived fully and happily. Remember that you are good enough that you are loved and that God truly cares about you. I know that there may be a huge storm right now, but there will always be a rainbow soon after. Just believe have faith! Pray!

Just try it for just a quick moment before you go to sleep or before you wake up and pray for the strength to make it through. With God by my side, watching out for me it makes me feel like I’m not so alone. It made me feel like things could get better, that miracles do happen. So don’t give up and prayer really can move mountains if you just let it. God can become so much in your life. He has given me hope for a cure to come someday for HD, and also for my sister and I to not end up getting it, or if we do, to have the courage to fight through it like my dad does every single day of his life.

2. Have Support

YOu can find this in a lot of different areas of your life such as close friends, family, teachers, and most importantly its also good to talk to a therapist as well. There are also several different support groups out there for HD specifically. Those help a lot.

The key to it is just don’t go through it alone! I felt alone for along time, but now I’m finally starting to see that I’m not alone at all. I have my family, my dog, I have my writing, my books, I have God, I have a roof over my head and good friends, good music to listen to, just remembering that lifts me up and makes me feel like everything will be ok.

For me, I have also been opening up more about my HD story to as many people as I can and telling my friends about it. What did get me through was my sister. She and I grew up with HD together so I talk to her about it all the time. We’re best friends. When you have something like that, it really helps out a lot.

Find someone like that, someone who will listen to your story because it matters, you matter! Just telling someone close to you how you feel about HD and how it’s afffected you personally can help. They don’t even need to give you advice, find someone who will be there when you really need a friend, when your in tears. If you have someone like that go to them and just talk it through with them, they will listen. Just simply doing that helps.

3. Listen to Music

Everytime I needed some comfort during these hard times with HD, I’d always listen to music. Just listening to the radio or turning on a favorite song can really lift your spirits. Singing it out loud can help, too! lol

Do it in the shower, at home, in the car just have fun with it. Just don’t listen to really depressing music that may backfire on you. I went through that phase when I was younger in high school. I remember listening to all these depressing songs and it sucked. Now, I listen to uplifting music and it works.

Good Examples of songs to try:

Country ( Carrie Underwood, Rascal Flatts, Hunter Hayes)

Christian  (Chirs Tomlin, Francessa Banestelli, Brandon Heath, Lifehouse, etc)

Pop/ (Taylor Swift, Charlie Puth, One Republic, Imagine Dragon, Katy Perry, etc.)

Hip Hop

listen to 104.3 on the radio or The Fish 95.9

Pandora.com (This works very well you can make your own list of songs that you want to hear)

Spotify

Find some inspiring songs on Your own on Youtube.com You can create a playlist for those times when you need to de-stress.

Things to Take Away from This:

Try some of these things out! It really does help when you need to deal with all of this stress and anxiety that comes with having HD and also when you are living with someone who has HD.

Have hope that things will work out!

Hope you all have a great day & an awesome Memorial Day Weekend!

 

Hope pic