An Open Letter to the Denver Broncos

Dear Denver Broncos,

On June 29, 2013 my brother Mark passed away unexpectedly at the age of 41. Yes, he died young but that is only a small piece of Mark’s story. Mark was born with Cerebral Palsy in Texas in 1971. My parents relocated to Denver soon after he was born so he could receive the best care available from the Children’s Hospital of Denver. Though he was never supposed to speak, Mark defied the odds and often we couldn't get him to be quiet. Mark was one of the most joyful people I have ever met despite the physical limitations he faced each day.

One of the things that truly brought excitement into his life was his love for football. Mark was a lifelong Broncos fan and often placed bets with my Dad that went unpaid if he lost. For Mark football was something he could be a part of if only as a fan, but your team truly was a big part of his life.

Sadly, Mark died before this football season began but I know he was in Heaven cheering and screaming louder than he did on Earth. During some games I was convinced he may have been running right alongside of you, something he could have never done during his life. At the beginning of the season I told my husband (a devout 49ers fan, I love him anyway) that this was going to be the year the Broncos won the Super Bowl, for my brother. With each win he would just laugh and brush me off, but sure enough you made it all the way.

Going into Sunday’s game I just knew you would be Super Bowl winners. There was no doubt in my mind. But quickly it became clear that this was not the Broncos year. I was sad. I was heartbroken for my brother. But then I thought about what my brother would have done. He would have been upset for a moment but quickly he would get over it and begin looking forward to the next season. I am simply writing you this letter for two reasons: one, to say thank you. Thank you for playing your heart out. Thank you for going out there every game and putting on a show. And, second, don’t let your loss define you. Lick your wounds and move on. Do it for yourself and do it for fans like Mark. A guy who quietly watched from the sidelines, but whose life was changed for the better because of you.

Thank you, Broncos. I will be watching and cheering in Mark’s memory.

Fan for Life,

Megan Neri

P.S. Attached is a photo of Mark that captures his joy perfectly. Enjoy!

2012: The Year of Joy

Today I have been reflecting a lot on the last year as we prepare to say goodbye to 2011 and ring in yet another new year. The last few years have been hard for many and though I feel like I have been personally blessed, I have to admit, I am ready for something new. How about a double scoop of overflowing joy? Anyone?

Over the last several months at work I have been working on a project with a woman who wanted to spread the message of peace, hope, joy and love through generous giving. I learned a lot through this project, but the part that has really stuck with me is the belief that peace, hope, joy and love are a progression and you must go through each stage to progress to the next. I still am a little fuzzy on the peace part (at least as far as if it has happened for our country as a whole), but I think 2011 was a year of hope. Even though the news headlines often seemed to be incorrect it was a relief to see the message of hope that the economy was beginning to rebound. Personally I experienced hope through watching several friends get married and a few welcome little ones into the world. I experienced hope at work as new projects began to come our way and we saw the shining light on the other side of the business we have all been working to keep going. Hope is a wonderful thing, we don't have much if we don't have hope. But I am ready to experience joy.


 What do you think? Are you ready for some joy? What would it take to add a little joy to your life?

PSA for Huntington's Disease

As a follow up to my last blog I wanted to post this public service announcement which aired in Las Vegas on MIX 94.1 last Sunday morning. My friend Jenny and I, along with Dr. Walsh from the Cleveland Clinic Lou Ruvo Center for Brain Health, recorded a 30-minute segment discussing Huntington's Disease and our personal stories. Beyond being educational, the segment is proof that anyone impacted by HD is not alone. Whether you have the disease or are caring for family members who do, there are other people like you and people that want to help. There are also doctors like Dr. Walsh who are leading the charge in raising the level of care offered to HD patients and their families in our community as well as fighting for research that could one day lead to a cure.

If you have a few minutes I encourage you to listen to this piece. My friend Jenny shares her very personal story and it's powerful. She is a young woman who has faced some heartbreaking challenges in her life, including testing positive for the gene, though she has chosen to step out and share her story in hopes it will push the search for a cure forward as well as resonate with others with similar stories.

I am thankful for the show of love and support I received in response to my last blog. Its strange to put something so personal out there, but I believe part of the journey to a cure is coming together as a community and supporting one another. If I can remind one person that they are not alone then sharing my story is worth it. 

“I have found the paradox, that if you love until it hurts, there can be no more hurt, only more love.” - Mother Teresa

Huntington's Disease & Me

Last week I received some news that closed the chapter of the past eight years of my life: I do not have Huntington's Disease. You might be thinking, "Yeah, me neither, what's the big deal," but it is a big deal. One in 10,000 Americans are currently suffering from HD and one of those people is my mom. HD, is a genetic disease which affects the sufferers brain functions, slowly robbing them of the ability to walk, talk, think or reason. The most noticeable symptoms are slurring of speech, uncontrollable body movement, dramatic weight loss and depression. A person who carries the genetic mutation has a 50/50 chance of passing it on to their offspring.

In 2004 my mom received the news. The diagnosis was completely unexpected. No one in my family had ever heard of the disease let alone suspected it might run in our family and I am not sure what lead the doctor to test my mom for the gene mutation. Though the news was upsetting at the time, it wasn't until recently that I realized just how devastating the diagnosis was. HD seems to be a secret disease that very few people know much about or truly understand so getting information about it has been a challenge. And, many of the sufferers and their families tend to keep the diagnosis a secret because of fear of discrimination.

My mom's diagnosis shed light on some of her behavior and motor skill issues but it also brought up more questions for me and my brothers. We found ourselves at risk for inheriting Huntington's Disease and faced with a decision of whether to get tested or not. Because so little information was available to me I relied on what I could find on the internet, scrounge up in the medical section of Barnes & Noble and of course the occasional depiction of the disease in medical dramas on prime time TV. But even these things combined left a lot of unanswered questions. I found myself angry, sad and definitely not ready to get tested. Besides, I didn't believe I had the gene anyway. My mom was told early on by her doctor that she had never diagnosed someone with the disease that wasn't extremely skinny. I have never really fit that description and just assumed the few extra pounds around my bottom were a sign of my healthy genes.

Despite being convinced I didn't have the gene, the timing wasn't right for me to get tested. I was 23, single and a recent college graduate trying to find my way in the professional world. I decided early on that I would wait to get tested until I was ready to settle down, get married and have babies. In December 2009 I began dating Adam and knew from the start that it was pretty serious. So getting tested was starting to make sense. In late 2010 my mom's symptoms began to increase and show themselves in a way my entire family could no longer ignore. This pushed me further to consider getting the test. In early 2011 I began attending a newly formed HD support group at the Lou Ruvo Center for Brain Health. It was at the first few meetings that I finally understood what Huntington's Disease was beyond my still limited experience. I began learning more medical based information about the disease and also learned that there are no definitive physical signs of the disease if you aren't symptomatic. So, essentially I realized that my struggle with weight was not a good enough reason to not get tested.

In February of this year I began getting my insurance in place to prepare for the worst case scenario and then began going through the required steps before I could get my blood test. I met with my general practitioner, a genetic counselor, neurologist and finally a psychologist. Basically, I have seen more doctors in the last six months then probably the last 10 years combined. This required process might seem overboard, but I understand now why it is the way it is. Getting your test results are life changing no matter if they are positive or negative. If you do test positive for the gene it is basically the beginning of a waiting game, waiting for the first symptoms to appear. If your test comes out negative it is good news for you, but it doesn't change the fate of those in your family who have the gene.

After jumping through many hoops, last Friday, Adam and I met with the doctor to receive my results. We both breathed a major sigh of relief, though Adam swears he knew I didn't have it. I was happy to share the news with my mom, though it was hard to not feel a little bit guilty. We cried and laughed and through it all she was still able to ask me when I was going to give her a grand-baby. (So, I guess this means the pressure is on!)

So, what's next? The chapter of my life wondering if I had HD is over, but my fight for a cure has just begun. I believe everything happens for a reason and that God has a plan for each of us. The process of getting my results has been a struggle in every way, but it was supposed to be that way. Now that I have lived the sleepless nights and anxiety of waiting for my results I am ready to stand beside my friends and family and fight the good fight. Through this process I have met a group of people who all share the bond of HD. Together we will fight this thing. I have recently signed on to help launch the Huntington's Disease Society of America Las Vegas Affiliate. I will do whatever it takes to give a voice, face and name to Huntington's Disease.

If you have taken the time to read this, thank you. I hope you will reach out to me with any questions, thoughts, emotions or comments. Sometimes we thinking not acknowledging something is the best way to deal with it, but by simply speaking up you become part of the journey to a cure.

Sacrifice

What is sacrifice? Do I really understand the meaning of that word? As part of Ash Wednesday I have been thinking about this a lot. Over the past several years I have chosen to practice Lent in symbolic preparation for Easter. After much discussion with my friends and co-workers I have chosen (boldly) to give up sweets which includes dessert of any kind, especially ice cream and frozen yogurt. Some of my friends have chosen a much deeper and mature route, but the truth is giving up sweets is a pretty big sacrifice for me. I feel a little silly and shallow admitting that, especially as part of a tradition that celebrates the death and resurrection of Jesus, but at the same time I feel like its the perfect exercise in self control. Sometimes I take sweets for granted or overeat without thinking, but this is a chance to gain a new perspective.

According to some traditions, Sundays during Lent are considered a mini-Easter celebration and fasting is not required. Though I can appreciate this, for my own sense of accomplishment I will skip Sundays, how much sweeter that first treat will be after 46 days anyway.

What are you giving up or sacrificing this year? What personal growth do you hope to gain from it?

Fighting the Good Fight

Last year I lost 40 pounds. It was amazing. It was freeing. I not only felt in control of my life but I also felt comfortable in my own skin. Fast forward 12 months later to March 2011 and I find myself struggling to not put back on the weight I fought so hard to lose. Why does this happen? Why do we work so hard to get where we want to be to only live in that moment for a short amount of time? I can think of a million reasons why those pounds of fat keep finding their way back to my thighs. I'm in love. I love food. Life is busy. I have better things to do then workout. But these are just excuses. Every time there has been a major change in my life (relationships, career related, moving, etc.) I always tend to gain a few pounds, so the trick is catching those pounds before they stick permanently to my mid section.

There is more to this than just the weight or the vanity of the subject, it makes me wonder why it seems like perfection is fleeting. Or more accurately, why does it seem like happiness comes and goes so quickly? Is this human nature or is it just me?

I'm not exactly sure how to answer these question, and if I did I'd probably write a book not a blog about it! But in the meantime, I guess I will continue to fight the good fight when it comes to keeping my waistline small and my relationships healthy.

Baking: Key Lime Pie

Ever since I took home economics in seventh grade I have loved baking. It might have a little something to do with my built-in sweet tooth, but I also enjoy the process and the end result of something delicious to share with the people I love the most. Despite my enthusiasm, one out of three of the things I bake in the kitchen is a disaster. With that in mind, I thought my blog would be the perfect place to share my successes and disasters. So, get ready for some mouthwatering and hilarious stories!

Last week one of my close friends (who happens to also be a co-worker)celebrated her 27th birthday. A few months ago she had mentioned her love of key lime pie so I thought this would be the perfect opportunity to try something new in the kitchen. The bonus was that not only was the recipe super simple, it tasted delicious, too. Because the pie is no-bake, it takes only a few minutes to prepare and is perfect to prepare the night before you want to eat it.

TIPS: the recipe calls for three limes to make a 1/2 cup of juice, I used four and still had trouble meeting the required amount of liquid, so I just topped off the lime juice with a little bit of water and it turned out fine.

Carnation Key Lime Pie
(Credit: Nestle Toll House Semi-Sweet Morsels Best-Loved Recipes)

1 prepared 9-inch (6 ounces) graham cracker crumb crust
1 can (14 ounces) Nestle Carnation sweetened condensed milk
1/2 cup (about 3 medium limes) fresh lime juice
1 teaspoon grated lime peel
2 cups frozen whipped topping, thawed
Lime peel twists or lime slices (optional)

Beat sweetened condensed milk and like juice in small mixer bowl until combined; stir in lime peels. Pour into crust; spread with whipped topping. Refrigerate for 2 hours or until set. Garnish with lime peel twists. Makes 8 servings.