A HUGE thank you for all the love from the Boston Globe South article

I am humbled to say the least.

When I first started my blog, I had all these fears about who will want to read my blog? Who will care enough? 

Well I can for sure say that people are coming out of the wood works to care about my blog. I have a huge amount of people- family, friends and people I don't even know care enough to help me raise awareness, and donate to Huntigntons Disease.

I can never thank these people enough!

I had the same fears when  Christie approached me about the article. What will people in Abington think? Abington is a very small close knit town and I was nervous. Who will want to read about me and my disease? But my faith in humanity has been restored becuase people truly do care.

I never once in my lifetime thought I would have an article about me.I am normal person, I have lived a normal life, but have an abnormal disease at a very young age for HD. So  I have decided to tell my story to the world, with support of my family. I  consider myself to be an advoacate for Huntingtons Disease -thanks to all of you who decided to join me!!

My words will never be enough but I wanted to take time out to thanks you for being my support system, caring for me, lovng me,donating, and helping raise awareness,

Alexandra 

Caffieine and Paleo Diet affects on HD

Hello readers, 

Thanks for following a as I share my heart and story.

  

As many of you, caffeine makes a world of a difference on almost all of my syptomns. A few months ago I over caffeinated myself. I couldn't even sit in a chair or walk by myself. My movements were AWFUL. I had decided it must have been the caffeine because I had three coffees that day. Ever since that day I have been drinking decaf and my syptomns have been amazing. Not non existent because they are there but just incredibly better. Now the day of my surprise party, I was at Starbucks and was so concerned with ordering my sisters coffee right that I forgot to say decaf when I ordered my coffee. The whole time we were walking In Ikea, I was walking holding my sister or her boy friends arm, my balance was off, I was slurring my words, and having a hard time processing my words. Unless I am extremely tired, those things never happen anymore. It was clearly the caffeine.

 I only figured the caffeine because I over did it one day. So now my thought process has been if caffeine affects me so much, what else affects me that I am putting into my body?? So I began researching and the answer has been the Paleo Diet. Now I will be the first to admit that the Paleo diet seems crazy, no dairy, no grains, no processed foods?? But I have had more than one person tell me that they have heard great things about the paleo diet and HD. I also did my research and it has had good affects on other people so it cant hurt try it. If I did not know how much of a difference caffeine makes I would probably be skeptical. But it really does.

 My mom and my sister both agree with my decision to ease into a Paleo diet and start thinking about what I put into my body more. My mom even pointed out that last week when I had an awful stomach bug and was not eating that my HD was perfect. She is right.

I am going to begin this week by cutting grains and processes food. I will keep you updated on the results.

Once again I know this may sound extreme and crazy, but if you were me and there was a slight chance of bettering your HD syptomns you would jump on board.  I also wanted to clarify that I'm not going off my meds, just  changing what i eat.

Thanks.

Alexandra

Sulmonte and Frenier

Hello readers,

Happy Friday!

I hope you enjoy your weekend!

A long time ago my Papa built an accounting firm. When he retired he passed the firm on to my Aunt and Uncle. It's a family business. The only people who work there is my cousin Daniel, my aunt, uncle, my moms cousin, and my stepdad. And when I was younger, my Nana used to clean the office and I would go and color in a spare room. :)

Recently, they built and moved into a new office. To say that it's beautiful is an understatement. I am in love with the new office. I have been helping them get organized in the new office. It's perfect because they could really use the help and I am getting out of the house. Staying busy is an important part of me staying happy and they all know that. When I am at the office, time passes by real fast. I believe that helping at the office is going to help me get through fall and winter.

Where it's a family business, I don't feel embarrassed because of my HD. I just feel like myself. I can also chose to go help when I want to. So if I'm having an off day, no big deal. I believe this new arrangement is going to work out perfect. I am already proud of myself for helping despite my HD.

Thank you Auntie Carol and Uncle Chris for allowing me to help out!
And of course, thanks to my Papa who followed his dreams a long long time ago and made this possible for all of us!

Thanks for following along as I share my journey,

Alexandra

Current Feelings

Good morning, 

I have really been enjoying the last few weeks of Summer :)

I have been helping my cousins wife Katie with her babies. It has been really great for both of us.

Also, I am not sure I have told you all about my new Wednesday night sister tradition- I have been going to visit her every Wednesday in Boston!! It's been amazing that she lives here and we get to hang out. I am going tonight!

Over Labor day weekend I went to Prudence Island and the Cape with my cousins! I went fishing for the first time in the ocean, and I caught and held a baby shark!! I have been living my summer with no fears!!!

Me and my god son and my niece in Prudence!

After the HDSA walk on Saturday, I took a ride with my parents, my sister, and her boyfriend to Cape Ann. It was quaint and beautiful. We went in some really cute stores!

I don't want my summer to end, but I have never been one to hate fall. I am just nervous that without my pool and beach days, will I  be happy? I can fight through it I have made it through every thing else. I still have the same people supporting me and spending time with me. Plus, I have a lot of things to look forward to; we have some day trips planned, I am going to Florida in October, and apple picking sometime this fall as a family :).

I have been beyond happy this summer because I am still able to do all the things I love. I'm so grateful for my current state and condition. I have been feeling good. Due to my HD I have no idea what next Summer holds. Does that scare me?? Without a doubt. But dwelling on it is no good. One thing my HD has taught me is to embrace the present--and this past summer, summer was amazing and one I'll never forget.

As always thanks for reading,

Alex