7.25.2014

Florida Bound!!!!

I am so excitced to be able to announce that I am Marco Island bound!! My parents, grandparents, aunt and uncle have  condos in clear water beach, but this is a part of Florida I have never been to!
I am running around getting a pedicure and finishing packing today, and I leave tomorrow.

I was invited by my moms best friend Crystal to surprise her three kids in Florida. A year ago I moved back to Boston from living 15 years in Kansas. I have only seen the Loritz once since moving.   I have been baby sitting them since Braden was 2, Haley was a  baby , and Brock was not even born yet. Now they are 7, 9, and 11.  I went to Arizona with them, and now I am going to Florida with them.

 To say I have missed them is an understatement. They mean everything to me.  My little Haley is one of my best friends. I am so grateful that their parents are so good to me and decided to invite me. It has given me something to look for ward to. They have been great supporters in my HD journey. They all came out to walk for a cure with me, and my Haley held my hand the enter walk. The Loritz are more like our family than our friends.




Thanks for reading,
Alexandra 




7.24.2014

One of my great loves: Teaching

For as long as I can remember I have wanted to be a teacher. I never second guessed myself, I always knew I wanted to teach. Even as a child, I would always be playing school. I was  in the role model preschool classroom where I helped a  special needs girl.  It's just who I am, and one of my greatest loves  and passions is teaching.

With each college course I was reassured that's what I wanted to do.  When I was student teaching,I fell in love more and more with teaching and learning. I was passionate about helping my students learn and grow. I am ever thankful for
 my student teaching students for teaching me so much.

In August of the past year,  I began teaching Autistic students. I truly felt that it was my niche, my calling, what I was supposed to be doing.  I fell  deeply in love with Autism and my students. In December I began seeing Dr. Frank for my HD symptoms and in March I was diagnosed with HD. In April I had decided that there issues and my issues together we no longer safe, and I could no longer teach or care for them. A decision that breaks my heart. I deeply miss them. I could have taught them for ever.

In June, thanks to my cousin wife's Angela, I was able to volunteer in her classroom, and in the Fall I plan to do it again. I had really missed just being in a classroom, so I loved volunteering and am looking forward to doing it again.

Even though  I am no longer teaching in a classroom, I feel as though I am still a teacher, in a different way. By sharing my journey with all of you, I feel as though I am teaching about Huntingtons Disease, and how to not to take each day for granted, and live in each moment. I will always always have a teacher heart and spirit.


As always thanks for reading,

Alexandra 







7.15.2014

HD Advocacy: The Huntingtons Disease Parity Act

As many of you know I have not been working for the past three months because of my HD. My movements were getting way too bad and my balance was off a lot. I just felt that I was always exhausted and stressed; two things that are not good for my physical symptoms. Now, three months later, I am physically I feel so much better but I deeply miss my students.

I was passionate about being a teacher of students with Autism. It was all I wanted in life; was to teach and be a mom. I truly found my niche with teaching autistic students and I felt like I could have taught them forever. I honestly looked forward to going to work. I loved my students. 

Since I have not been working, I applied for social security  disability on April 25th. I finally had a phone appointment about six weeks ago. But now I have to wait even longer just to see if I will be eligible and will qualify for benefits. If I did not have my parents to help me I would be in a lot of financial trouble. I can't even imagine if I had a family to support.

There are many diseases that are considered "fast tracked", meaning if you have that disease you receive disability sooner. HD is not one of them. The waiting period for those with HD is way too long. The SSA guidelines for HD are 30 years old and are medically inaccurate. This means although some people suffer from HD and cannot work, they are denied benefits because their symptoms don't meet the SSA's definition of Huntington's Disease.

I have some brave and insipiring friends in the NYA who are in D.C. right now trying to make that change. They are trying to pass the Huntingtons Disease Parity Act.


This Act will direct the commissioner of the SSA to revise the outdated guidlines and offer more people with Huntington's Disease disability benefits.

Good news. YOU can help pass the act just by clicking here All you have to is enter in your zip code and an automated letter will be sent to your congressman. It would mean so much to me and all my friends within the Huntington's Disease Community if you could take 3 minutes to help us out!

Thanks for your support,
Alex




7.14.2014

Memories of my Dad

Hi readers,


Today I am going to share some memories of my Dad. This is a topic that is hard for me to share about because he was so important to me. I have received so much love and support for sharing my story that I am going to share my whole story with HD, the good and the bad.  

My dad also had HD.  My parents divorced when I was 10 months old. I saw my dad twice a week. But, when I was 8 we moved to Kansas for my stepdads job, so I saw my Dad less and less. 

Each time I saw my Dad the HD would have progressed more and more.  It was really hard to understand as a child, I didn't get it. In the beginning we would talk to my Dad on the phone but his speech was so slurred. I would cry to my mom each time. I knew he was sick, but couldn't comprehend what the HD did to him.

I remember my Dad would go to the hospital for a few weeks at a time, and then it was permanent.

On December 21st, I went to go visit my dad, having no idea it would be the last time.  I remember him being so frail and 
thin, my strong Dad was deteriorating  before my eyes.

On Christmas Eve day we were supposed to go visit my Dads mom, but I was told that my dad was sick and she was with him. 

Christmas Eve is my favorite day of the year, we have my moms whole side over. My thoughts were with my Dad. I went upstairs away from the crowd and my mom followed me up there to let me know that my Dad no longer had a few years  to live, it was a few days or weeks. All I remember is screaming and falling into my Moms arms. I was just 13 and loosing my Dad to HD.

On December 26th my Dad lost his battle with HD. It was the pneumonia that took his life. He waited until my Aunt and Grandma had told him that my sister And I had said it was okay for him to go.

My Dad had HD but that was not what his life was. His life was my sister and I. He was at every sporting event of ours despite his HD. He was a committed and involved Dad. He loved us fiercely and I loved him just as much. His hospital room was filled with pictures of us, and each time we came he would point his pictures, trying to tell the nurses we were there.

I deeply miss him, but know he is watching over me.

Now that I have HD his strength lives inside of me. I try to live each day with joy and passion in honor of him.


7.11.2014

Why it is important for me to share my story

Hi readers,
This morning I am going to share about why sharing my story is so important to me.

I truly believe that our stories do matter. This is why I am always sharing the good and the bad of my life,  as well as my HD. It has become important for me to share my heart with you. 

I encourage you to do the same, it does not have to be in the form of a blog. It can be simply sharing with a trusted friend or family member, share your heart. Your always welcome to share your story in the  comments- your story matteres too.

I also share the good and the bad of HD because I strongly believe in raising awareness for  this unknown disease. It is important to me to be an advocate while I still can. I truly believe in advocating for other HD patients who can't because they are too sick. I will be their voice for as long as I'm able to.

This blog has become my safe have and it is so therapeutic for me to get all my feelings out. I would not be sharing with out you. Your comments, views, Instagram comments, emails, and Facebook messages truly truly keep me going. I could not fight the fight without this blog community behind me. Thank you!


Never alone,
Alex



7.08.2014

HD and genetic testing





Hi readers-
I am going to share a little bit about the genetic testing process of Huntington's Disease.

Huntington's disease runs in families. My grandfather had the gene, which means that his 13 children would all have a 50/50 chance of having the gene. My dad got the gene from his dad which means that my sister and I have both had a 50/50 chance of getting the HD gene. We could have been tested at age 18, but we both decided that we didn't want to. We lived each day by a Garth Brooks song, "our lives are better left in chance. My personal choice was that I did not want to know until I had kids, or until I was showing signs.


I was diagnosed in March of the past year and was able to be
 diagnosed by my neurologist  because of my signs of HD.


In order into be tested I had to see a genetic counselor until I was ready. In January I started seeing Lauren, and my blood was drawn in May. Since I had the diagnosis from my signs, I did not have to take the blood test but it was some thing  I wanted done.


I got my results the other day.  I had my mom, sister, and step dad Ken with me. Lauren told us what we already knew-that I am gene positive. I asked Lauren what my CAG number is and she told me it is 58 from my dad and 19 from my mom. Everyone  is born with to two HD genes. If the gene repeats to many times, my gene from my dad repeats 58 times, they are considered positive for HD. The average person with HD begins showing signs between 30 to 50 and their gene repeats 40 to 44 times.  I was showing signs at 23 and my gene repeats 58 times. Does my high  number a scare me?
With out a doubt But it does make sense. The earlier the signs the higher the number. Lauren assured  me that the test results do not change the progression or the way they treat me.


I am really thankful and agree with my decision to wait until I was showing signs to test. If I had been tested before knowing my CAG number is 58, I would have been really scared knowing that my signs of HD would more than likely start early.

I wanted to thank Dr. Frank and Lauren for preparing me so well.  I was at  a point where I knew what to expect and I am handling the news well. I couldn't have gotten to that place without them.

"I could have missed the pain, but I would have had to miss he dance," Garth Brooks


As always thank you for reading, this blog has become  my safe haven.

Alexandra







7.07.2014

4th of July

Happy 4th of July!!
I hope you had  a beautiful weekend - I  sure did.



On the night before the 4th, Thursday, I went to my  cousin Matt and his wife Erin's cook out. They have a beautiful house pretty close to the beach.  We ate there and spent time with my family. We all walked to the beach later that night to watch fireworks. It was a really fun and perfect day!


My Dad's sister Mary,  gave me, my mom and Liz the most beautiful "cure HD" bracelet. At the cookout my mom  and I

showedmy aunts and cousins, and told them the beautiful story and they all told me that  they would love to buy and wear one- that warms my heart. The bracelet is made by
 the company, " 3 squeezes" The company was started by the daughter of a mother with HD. When her mother was in the late stages of HD, and they could not communicate, they would squeeze each other on the wrist three times meaning - I love you. To read the story, or buy your own bracelet  go here.  The money goes towards HD.



Love my crazy mama more than she knows - she is a big reason of why I fight HD  so hard. 
She is my biggest supporter :)



 My cousin Melissa and my niece Payton
 - these two have my heart. My cousin Melissa is another one of my biggest supporters.







Our 4th of the July cookout at my aunt and uncles on the  cape was rescheduled from Friday to Sunday because it

 rained on Friday. We ended up having a beautiful weather day.


We boated, beached, and hung out on the raft all day - all of my favorite things. We reminisced  on all of our old cottage days at my nana and papas cottage in the same town.



















Nothing can make happier than being on the grass with all my little loves, the hot july sun, ocean breeze, and smell of the ocean, and being with my family.


This new generation of kids are best friends and their faces light up when they see each  other, as does mine when  I watch them all love on each other. It is really amazing to  be  able to witness a whole new generation of our family understand that in our family, your family is everything.

Due to my HD, Ihave chosen not to have any children, a choice that breaks my heart. Days like our 4th of july cookout ith all my gazillion little loves heal my heart. God knew I needed all those  little loves to be in my daily life. :)


Never alone,
Alexandra













7.03.2014

In LOVE LOVE LOVE with my summer

Good morning readers,

I have been in LOVE LOVE with this summer! I have been having so many perfect beach, cottage, pool days and fun things with my family, such as Zac Brown Band, and Red Sox games. 

On Sunday, I went to the cottage again, except this time my cousins were there. We hung out on the big raft ALL day- it was beyond PERFECT.






On Monday I went to the Red Sox game with my family- another beautiful and perfect night :)



On Tuesday I had a pool day at my house with my cousins wife Katie, my niece Francesca, and my sister Liz.  I think that I accidentally drank Katies coffee with caffeine rather than mine with decaf, because all of  the sudden my symptoms flared up.  At least I know for sure that it is the caffeine that makes me feel worse.







Besides that incident I have been feeling AMAZING. I am just so grateful to be feeling so great, because  I can do more. I can walk more and be more active. Also the less my body moves, the less exhausted I am.  I also know how it feels to feel awful, to uncontrollable body movements-  its not fun. So I am thankful that this no caffeine thing is allowing me to have the best New England summer ever. I just go, go,go and am so thankful for the best supporters to bring me places. 

On Wednesday I went with my Dad's  sister Mary to see my cousins Colleen and Kerry and my cousin Kerry's new baby.It was a really great morning.


Thanks for reading, 
Alexandra