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Wednesday, October 22, 2014

HD update



  Hi Readers,

 I have  quite a few things to update you on involving my HD. 

On Saturday I went to my cousin on my dads side, Kerry sons third birthday. My cousin Pat did the HD pie In the face challenge in order to raise awareness and donations for research for better   treatments and a cure. He did this for his 8 aunts and uncles, and cousins who have the HD gene. Patrick then nominated his mother and her two sisters, and his mother, my aunt Mary nominated her 13 grandchildren. At the party, all 13 kids did the challenge.  The kids lined up from oldest to youngest,and Pat said a great speech, and then got the oldest grandchild in the face with a pie. One by one the kids got each other- It was the most adorable and funny moment. I was so grateful to be there because it made me truly believe in more treatment and a cure. My heart was full and I was happy. Right before they all did it, and as they were all lined up with their team hope shirts on, my cousin Kerry said what where's Alexandra and hugged me- it was so sweet. I just adored seeing it. 

My Aunt Mary, is an HD saint as my mom,Liz and I have called her. It's true- she is gene negative, and her father, 8 sibilings, including my dad, her nieces and nephews, are all gene positive. Mary is a true advocate for all of them and me. She picks me up at least once a week and spends time with me, and is always going to visit her siblings. She refuses to give up until there is a cure. She is also an amazing mother because she has raised all of her kids to be advocates and compassionate. All of her kids, my cousins are doing the same thing for me. I  can't thank them enough for al they have done for me. My HD has brought us closer and I would NOT change a thing!! Thank you thank you thank you!


On Sunday I had my first HD youth support group. It was an amazing experience to be surrounded by other youth who simply get you, and your story with out having to go explain. I truly can't wait for our next session. Some others to add to my HD family. I am very grateful :)


On Monday I went and saw my neuro Dr. Frank and my genetic couselor Lauren. I just adore both of them more than they know. I always always feel better after our meeting.  I feel infinite like together we can accomplish any thing- especially kicking HD in the but! I had a few issues I wanted to discuss  him; my movements getting worse, my speech-  I can tend to slurr my words, and my swallowing. He had answers for all my issues, he suggested a new medicine for the movements, and to see a speech therapist for my speech and swallowing.


It was a HD packed few days, and I loved nothing more. All of these things  are key factors in my HD journey, staying happy despite HD, raising awareness, and finding a cure.

Help for today, and hope for tomorrow 
Alexandra  

Friday, October 17, 2014

Exercise and Huntingtons Disease

Happy Friday!


I deeply and truly believe that excercise has been a huge factor in my happiness. I have been walking  30 minutes daily. Some days I walk with my mom, or my cousin Melissa and her kids,  or my cousins wife Katie and her babies. I try to walk everyday because I know just how good it is for me physically, mentally, and emotionally. There have been studies done that say a person with HD should excercise 30 minutes a day. It always lifts my spirits because it gets me outside in the fresh air. I also bought some cute new workout clothes, and my sister bought me new tennis shoes, and three new workout outfits -I can't get enough of them. :)

I have had some good chats with my mom, Katie, and Melissa when I walk with them and it makes the time go faster :) 

I am so grateful to have found something else that helps my HD.


Thanks for reading as I share my story.
Alex 

Tuesday, October 14, 2014

Be Brave

Hi readers,


Today I am encouraging you to be brave and fearless. When I first started my blog I had so many fears-I had to be brave, and jump anyway depsite my fears. I had always always wanted to have a blog, but it took the push from my sister to jump into it bravely and fearlessly.What is something that you have always wanted to do but haven't? I'm encouraging you, pushing you, and motivating you to jump bravely and fearlesly.


 It has been hard to share my journey, the good and the bad, of having Huntintgtons Disease with all of  you, but the feedback that I have received is worth the struggle. Do the hard thing, fight through the struggle- the outcome is so worth it, oh so good.


When I was considering doing the Boston Globe article I had a lot of anxiety and fears but once I committed to my decision to share my story with the world, I was estatic. My story was in the top ten most viewed the day it was released, and 111 people liked the link on the Boston Globes facebook page. The amount of awareness I raised was worth all those fears and anxieties.

My point is that in all of these situations I had fears and anxieties, and jumped anyways. You can do the same. It doesn't have to be  sharing your story of an abnormal disease, it just has to be something you want to do but have not because your fearfull.
 
Do something brave and fearless today- I can promise you the outcome is oh so worth the struggle. Do something hard, and jump!

Alexandra 

Monday, October 13, 2014

Florida Vacation

For the past 10 days, I was in Clearwater Beach, Florida. It's my home away from home. My parents, grandparents, aunts and uncles all have condos there! We have been going there twice a year for many years! It is my favorite place in the world to visit!

We had gorgeous and hot hot weather! There was a lot of beach days, lunches and dinners out, live music, happy hours, and sunsets- all of myf favorite favorite things!

There were many perfect and peaceful moments while I was on vacation- I feel as though I am really soaking in the good moments more and more lately!

I do want to point out how grateful that my family is able to go on vacation in Florida as much as we do-I know just how blessed I am, and am very thankful and appreciative.

It was a perfect 10 days- that vitamin D replenished my soul :)

As always thanks for reading,
Alex