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!

 

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