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:
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.)
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)
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!