6.30.2014

Zac Brown Band Concert

My sister Liz and I got my mom Zac Brown Band tickets for her birthday and Mother's Day. We were so excited for  a night out together with the original three. My mom and Liz are my first best friends.

 Any thing we do together is always fun, but the Zac Brown Band concert was a BLAST. He was incredible. I can't get enough of his voice. Country music has my heart, and will forever and always remind me of my 14 years in Kansas. I love how no matter what mood  I am in, there is a country
song that relates. We danced and sang all night-it was so perfect. The weather was gorgeous. I could have stayed there forever - so many great moments.  My favorite song was his live version of  "Free" It was amazing!



So grateful she lives here, and we can do all these great things together.

Liz, Me, and Mom


As always thanks for reading as I share my heart,
Alexandra 






6.27.2014

HDSA Team Hope Walk: Boston

Hi Readers,

I am going to be walking for a third time for a cure for Huntington's Disease.  I will be walking at  on the  HDSA Team Hope Walk at  Castle Island in Boston on Sept 6th at 10 am. 

I walked the same course the previous year with about 40 of my family members. We walked in memory of my Dad and all of his family who had passed or struggled with HD.  Last year we walked for my sister, myself, and many cousins who were at risk. 






In the past year, I have had the diagnosis of HD. This year we will be walking on Boothby Angels/Team Alexandra. 

When I received the diagnosis, our family friend Michelle organized a Team Alexandra for the Kansas HDSA Team Hope Walk, and I walked for a cure for the second time. I was blown away with all of the walkers and donations I had. To se e that post go here

                   
Now I am going to be walking for a cure for a third time. If my journey with HD has taught me one thing it's that I can't do this alone. I need my caretakers and support system.
Thankfully I have been blessed with the very best of both. 
I can't walk and raise money for a cure alone - I need your help and support. 

I already have 22 family members who have committed to walking with me.  When they all told me they would walk with me it made my day. Knowing I have 22 people who are as committed to finding a cure as  I am warms my heart. They understand this is not an easy journey for me and are committed to helping me. That's what family means to me.
Thank you Thank you Thank you!!


To read my Huntington's story, donate, or register to walk go here

Thanks for considering,
Alexandra 





6.26.2014

Really Great Days

Good morning ,
This morning I am going to share about some really great days. 

My  physical symptoms (body movements, balance issues trouble walking)  have been really great ever since I eliminated caffeine.  It has made a world  of a difference.  I do still drink my iced coffee, I just drink decaf coffee. 

So since I have been feeling so great I have been staying busy between pool days, beach days, and cottage days with my family. 

On Sunday I took a  ride to my Aunt and Uncle's cottage with my Nana and Papa. My Nana, Auntie Carol and I walked over to the beach. It  was a perfect day at the cottage.

On Tuesday I went to the beach with my cousin Melissa, her two friends, and all their kids. It was the most beautiful beach day I have ever had - the weather was PERFECT and the water felt great! I got to play with all the babies at the beach :) We did not want to leave -  we spent  7 hours there. 



When I got home on Tuesday my cousin James and his wife,Katie and Francesca, my niece, were at my house visiting my Nana and Papa.  So I got to play with my niece on the swing.

I LOVE LOVE when my day's are filled with babies! 

and I LOVE LOVE  when I have so many perfect days in a row, it keeps me going!!!!

and I LOVE LOVE that I have so many people that are willing to take me so many places :)

Thanks for reading,
Alex 

6.25.2014

How I get by

Good morning readers,
Thank you for being here.

I am sharing today about some perfect days, and why I have been having perfect days. 

I have been so happy lately because it is summer, and I can never get enough of summer. I have been spending my time at the beach  or pool with my family or at my aunts cottage. I have had so many great days in a row, and I am ever grateful for those perfect days. 

I always say I wouldn't be here without my support system so today I am going to share about who my support system is. 

My family is my everything, my best friends. They are AMAZING to me; supporting me and my trip to the convention, letting me volunteer in their classrooms, having pool days with me, inviting me to the cottage or beach
days, inviting me places with their friends, and sending me flowers. They send an unmeasurable amount of love and support my way. My cousin Melissa was telling me that she was going to make a family schedule for me of who hangs out with me on what days. THAT  is how many people I have loving on me, that different people need different days.Now  I also have my sister Liz living here, and she is a HUGE support to me. 

I would also wouldn't be any where without my friends, specifically my best friend Jenny. I don't know where I would be without this girl. As I get sicker, our friendship gets stronger. And my OS family and sister friends, your support and love gets me by.

And now I have my NYA friends, I get my strength from them. Their strength and resilience inspires me to be strong. They help me get by.

If there is one thing I have learned about my struggle with HD, is that I can not do it alone. And yes HD has forced me to quit working, and some days are harder than others. It is a daily struggle, 
but I do get out of bed every day and live. I do what makes me happy; beach and pool days and spending my time with my friends and family. I could spend my time being depressed and upset about HD, but that's not how I choose to spend my time. My choice is to keep fighting the fight and honor my Dad.  I have physically hard days, days where it is hard to stay positive, and I do everything in my power to stay positive on those days. On the hard days I cope by staying busy with my family, or talking and hanging out with my friends. 

As always thank YOU for following as I share my heart,
Alex

6.21.2014

HDSA Convention Part One: Thursday

On Wednesday, Liz and I headed to Kentucky for the HDSA Convention. I was beyond excited to be able to attend!! Thanks to the NYA Liz and I were able to get a partial scholarship and did not have to pay for our airfare.

My words will not do justice for the experience I had and the strong and resilient people I met but I am going to try.

Let me first tell you about something that I was a little bit frustrated about on our way to Kentucky. Liz and I were flying really late at night and I was just exhausted. When I am exhausted my symptoms flare which makes it harder for me to walk. Therefore, we requested a wheel chair for when we arrive in Louisville to make the travel easier on me. However, when we got off the plane Liz went to grab the wheel chair and a worker yelled at her and said you can’t take that someone requested it. Liz tried to explain that we were the ones who requested it and she snapped back and said “who needs it?!” When Liz replied, “she does” the lady looked me up and down and told us we had to wait for someone to come verify that. I was so annoyed and frustrated we decided to walk.THIS situation is the whole reason why I blog and why I share my journey. More people need to know about HD and be aware of HD. Just because I look young and appear to be “fine” isn't always the case. However, weirdly, this situation just got me even more excited to be at the convention.

Besides being exhausted on Wednesday, I would say that I felt AMAZING at the convention. My movements were minimal and I was emotionally feeling great.  I was happy and when I am happy my symptoms seem to be few and far between J(which is ironic because as I write this on the plane my body is so exhausted it is hard for me to even sit in my chair)

Thursday was NYA Day. NYA stands for the National Youth Alliance and is a sector of the HDSA. The age ranges of the NYA include 9-29 of youth who are affected by HD. The goal of the NYA is to be the last generation who has to suffer and be affected by HD. We all have hope for a cure.
During NYA Day we learned about the importance of clinical trials, had ice breakers, learned about raising awareness, and how to cope growing up in an HD family. NYA Day was beyond my expectations. Thank you thank you thank you to the NYA Board and for all of the hard work you put in to make this day so special – you are all so inspiringI was blown away.

That evening Liz and I hung out with our new friends in the NYA. Everyone in the NYA is absolutely incredible and inspiring. They were all so welcoming and kind to us. I know that I have said in my previous posts about wanting an HD family…. well without a doubt I have one. I have never felt more connected to people as fast as I did with the young people I met at the convention. We all have at least a parent, if not more family, who suffers from HD. Most people there are either at risk, have tested positive, or have tested negative. We all just instantly get each other J One thing I loved is that there were people there who tested gene negative and they STILL wanted to be there fighting the good fight with us J Thank you all for being so amazing to us!!!!

That night Liz and I had a long talk about me and my case of HD and how I compare to other people with HD. I told some people that I had HD, they all come from families of HD, and some said they did not notice (insert shock!).  We talked about how I feel like my symptomare horrible  becauseit is all I know, but there are people in much later stages than me and I need to be grateful for my condition. There are people who have it worse than me and still working. There are people who have it worse than me and are much younger than me. As you remember, I chose to quit my job of working with Autistic students because of HD. But after this weekend I believe I am still capable of teaching general education. I have been inspired by people with HD, at the convention to apply to become a substitute teacher. Teaching makes me happy so that’s what I am going to do and I truly believe it is part of fighting the good fight.


The convention and NYA has changed my life for the better, and that would not have happened if Liz never reached out to Seth. So thank  you Liz and Seth.


Thank you again to all of you who read. My hope is to not only share my story but that you will share my story and blog with others. I want nothing more than to bring awareness to this horrific disease and someday find a cure.
Stay tuned for my other posts relating to the convention.

Oh, and if you care to learn more about HD I have good news for you! The convention is streaming many of the workshops for people at home to watch! (I will be watching some today from my pool). Just click here.

Help for today. Hope for tomorrow.

Alex












6.17.2014

Convention bound :)

I am so excited to announce it is convention week!!!

This week I will be attending the HDSA national convention with my sister I'm Kentucky :)

I think it will be so amazing for me. I need that sense of community of people who just understand it. My family and my friends have been so amazing and supportive, but at the end of the day, they really don't understand.

I am looking forward to  meeting people who do understand me. I am looking forward to meeting people who are just as passionate as finding a cure as I am. I am looking forward to having an HD family  and community!

On thursday, There will be a whole day dedicated to the youth, NYA day!! I am most exited for that day :)


I just wanted to take  minute to thank Seth for encouraging Liz and I to attend and apply for the NYA scholarship! Liz and I both got our flights paid for by the HdSA :) thanks for all you do to find a cure Seth!



Thanks for reading,
Alexandra 



6.15.2014

DASH Wedding: My family knows how to party

I had the BEST  weekend. It was my cousin Daniel's wedding weekend.  Daniel is more like  a brother to me than  a cousin.I love him and my other cousins like my brothers and sisters. My cousins and their spouses are my best friends, my support system my EVERYTHING.


We were all so excited to celebrate  Daniel and Ashley 
(Dash) In  my family we celebrate BIG. There is no small party or celebration. So for Dash's wedding it wouldn't be any different.

The wedding weekend started on Thursday. I was invited to get a manicure, and pedicure with the bridal party. Thursday night we had the wedding rehearsal dinner.
It was such  a fun night, I laughed and laughed with my family. 






On Friday it was DASH's wedding. Daniel cried when he saw Ashley coming down the aisle, and how we all cried and cried. My Uncle Chris was the one who married them, it has become a new family tradition. It was a beautiful and personable to see my uncle marrying his nephew! :)

After the wedding, it was time to party.  I don't know if my family does any thing normal - we do everything fiercely and passionately, and dancing and partying is one of them. So we tore up that dance floor, and celebrated Dash. As said by my step sister, "of course I am having fun there is never a dull moment at a Sulmonte event"




































Congrats to DASH!!

Love,
Alexandra