5.10.2014

HD Awareness Month: My current feelings

Happy may!!



I am so grateful  you are here as I share my heart and journey.


May is HDSA Awareness month!!  My doctor,  Dr. Frank, is being featured on the HDSA website for Voices of HD. I would love for you to listen
In case you missed my previous post:


Sharing about the hard of any thing is hard for me, let alone sharing about the real and the hard of HD.

It has always just been my nature to be a happy and positive person and to see the good in life. In order to raise awareness of this awful disease I have to share ALL of my journey, whether it is good or bad. If I have HOPE that there will be a cure I have to learn  to how to share about the REAL.

Physically I feel like it is progressing so fast. I feel so YOUNG. I am 23 and  people don't  usually start showing signs until they are 30-50. I had to stop working due to my HD. To see how hard that choice was for me, go here

Some times I just feel like I am missing out on so many things because it is hitting me so hard and so early. One of those things is being a mom. I shared a little about that here. I feel like I am missing out on being young with my friends. 

When I think about my future I don't imagine getting married and having a load of babies as I ALWAYS  thought I would. I see this disease progressing, which is SCARY.

Right now my symptons include body movements, trouble walking, off balance (I fell down the stairs and broke my ankle)

Mentally and emotionally I feel STRONG except for a little bit of anxiety, and for that I am ever grateful because MANY people with HD, struggle with depression. I feel like a fighter; like a riser. 

I am being real and honest when I say that overall I am truly happy. Yes I have my days where I am  emotional but overall I can say that I am happy.

A big part  of my happiness I owe to my support system. Yes I am not working but very rarely am I sitting at home by myself. I have my sister-in-law Katie and Francesca, my sisters, my cousin Melissa and my niece and nephew, my cousin Chelsie, my mom and Auntie Carol. They are bringing me coffee, and visitng, having me over, inviting me for lunch, dinner, and shopping.  I wanted to thank those people specificially for taking such  good care of me. I honestly can't thank them enough for my happiness. 

Right now there is no cure and no great treatments out there. This disease is progressive, and it is going to get MUCH worse than it currently is. On May 24th I am going to be walking for a cure in KC. I would love if you would consider  donate to me. I pray for a cure every day and I have hope that miracles will happen but I can't do it alone. I need YOUR help. You can help by clicking HERE to register and/ or donate to a cure. 

To those of you  who have already registered, and/or donated, I can't thank you enough!!

I have happy tears a lot knowing that I am never alone. 

As always thank you for reading and being a part of my journey. I could NOT do it alone.

Alexandra