Team Hope Walk 2014

So, five months since my last blog. How does that happen? Factor in a anniversary trip to Disney World to celebrate our 10th wedding anniversary, my graduation from college with a Bachelor's Degree in Business Management, the holidays and a surgery for me that involved a few set backs, it is easy to see how time can get away from you. Add in a severe case of writer's block and time can pass in a blink.

Hopefully, life will return to normal now and I can get back in to the swing of things.

In October of last year, Robert and I did something that has become one of our favorite things to do each year. We participated in the Team Hope Walk that the Great North Texas HDSA affiliate organizes for the area.  I thought I would share some of the pictures from that day.

     

First, we had t-shirts made for everyone to buy and wear. We charged extra for the t-shirts and sold them to family and friends, too. All told, we raised an additional $286 dollars from the t-shirts to donate to the HDSA. Thank you to everyone that bought a t-shirt. 

We got a lot of compliments on our shirts, too. Pretty much every person that we walked by commented on how much they loved our shirts. 

On the back is the name of several people in the family that have Huntington's Disease. If they have lost the fight, we added in the years. They are 

Robert's Great Uncle (His grandfather's brother)

Robert's Grandfather

His Mom

His Uncle (From his Great Uncle)

His brother

His sister

His cousin (daughter of his Uncle)

Robert

For the walk, we had Robert's sister Debbie, her three boys, a friend to one of the boys and Robert's daughter. We even brought Lady along for the ride. 

We had a pre-walk warm up with the shark and lion to the Cha-Cha Slide. 

And then we were off. The actual walk is approximately a mile around a small pond near Les Lacs park in Addison. Here, Debbie is being helped along by a couple of the boys as we walked around the pond.

Afterwards, there were hot dogs and other snacks. There were also several tables set up from the different sponsors for the walk as well as a lot of informational tables. We are hoping this year that we can get Robert's brothers to join us and have an even bigger group and show of support. 

Celebrating the Life of Cheryl Everett

It was four years ago today that Cheryl Everett's body lost the fight to disease. This disease called Huntington's Disease. Four years that she has not been with us. Four years of so many life events she has missed out. Four years of growth in grandchildren and even a new grandchild and some more great grandchildren.

After four years, it has gotten easier to think about her and the many memories that we have of her. But that doesn't mean we aren't sad and that we miss her any less. That couldn't be farther from the truth. We still miss her and still get sad when we think about her. I don't think there will ever be a time that we don't miss her no matter how many years go by. 

The thing is, she wouldn't want us to be sad. She wouldn't want us to dwell on how much we all miss her. Instead, she would want us to celebrate her life and our lives, too. If she were here today, she would tell us all that we have so much to be grateful for and so many better things to do instead of worrying about her. And so, this year, I want to celebrate all that she has given us. If it weren't for her, there would no Everett kids. There would be no Bill, Debbie, Craig, Robert, or Kevin. And I have to say, I am especially partial to Robert. Plus, there are all the grandchildren and some great grandchildren that are here as a result of Cheryl. We have so much to be thankful for and so much to celebrate as a result of her life. 

So, while we do miss her and are sad she is no longer with us, we can celebrate the life that she had and the lives we all have because of her time on this earth. And we can continue to support the effort to find a cure so that her future generations will have a life free from HD. 

Cheryl, I hope you are still enjoying dancing with Elvis.

Supporting Friends with Other Dreadful Diseases

Dealing with Huntington's Disease is a lot. It brings with it its own set of issues. But those dealing with HD don't have a monopoly on pain and suffering. Many others can use our love and support.  Robert and I are firm believers in showing our love and support to our friends and family that are dealing with problems and issues of their own. 

The month of September is the month picked to raise awareness for a disease that has affected some that we know very well.  It is Childhood Cancer Awareness month. Sadly, friends of ours have been affected by childhood cancer. 

One of these children is a sweet little girl that I watched when she was just a baby in the nursery at our church named Chloe. She was first diagnosed with leukemia at the age of 1.  Yes! A year old and she had leukemia! The day I learned that, I was heartbroken. I could only begin to imagine how her parents felt. Then, she went though radiation and chemo and it worked. For a while. She was diagnosed again about a year later. So, this sweet little girl with the beautiful smile and warm hugs had to battle a leukemia diagnosis twice before the age of five. The good news is that she just got her yearly test results back and she is now three years cancer free.  Praise God!

The second one is a dear sweet young man who was just recently learned he has has a brain tumor. He was diagnosed a few months ago just days before his 13th birthday. He has completed his radiation treatment and is currently in the midst of his chemo treatments. Through it all, he has maintained his love of life and his trust in God. Even now, as he struggles with some set back and complications as a result of this, he knows that God is taking care of him. 

We pray for both of these friends daily. One for healing and one for continued cancer free results!

Robert and I support raising awareness for childhood cancer and what these kids have to deal with when they still have so much life ahead of them. And with the help of some wonderful people and a great faith based foundation, Robert did something to show his support and love for these kids.

It all started when the Brown family was dealing with Chloe's fight with leukemia a second time. What started at as friends and family helping with expenses, emotional support, pray and raising awareness of this little girl's battle with cancer grew into a foundation to minister and provide support to other families going through the same thing she has had to endure. In the mist of the Brown Family's struggles, the Orange Out Foundation was born. The Orange Out Foundation's mission is to help families battling cancer through emotional, spiritual and monetary support and to support research to find a cure for childhood cancer. 

On Sunday, August 31st, a group of volunteers gave up their time to help benefit the Orange Out Foundation by giving of their time by cutting hair and shaving heads. Yep! Shaving heads. Since the month of September is Childhood Cancer Awareness month, shaving heads is a good way to show support for all of those that have lost hair because of their cancer treatments. The only request when having your head shaved or cut is that you make a donation to the Orange Out Foundation. Robert said sign me up!

 

So, Robert decided to shave is head. And he has chosen to keep it shaved for the month of September in honor of Chloe and Emilio. He hasn't decided if he will continue to keep it shaved after that. But, even for a month, to show support and love for kids battling cancer and loosing hair all over the world is alright by me.

To learn more about the Orange Out Foundation and how you can help this amazing group continue to minister to families as they struggle through this disease, please visit their website at www.orangeout.org.

The Pie in the Face Challenge

There is a new challenge out there that was spawned of the ALS Ice Bucket challenge. Only this one is to raise awareness for HD.

 

First a little about the ALS Ice bucket challenge… the thought process behind the bucket of ice is because it gives you a temporary freezing of the nerves to simulate what a person with ALS feels like all the time. Just a brief second of that feeling can give you a bit of understanding of what a person that is living with ALS deals with.  That short little sample is enough to tell you that you don’t want it and to sympathize with someone that does have it. This is definitely a worthy cause and I applaud the effort to help raise awareness for ALS.

 

When I first heard about the ice bucket challenge, I thought we need something like that for Huntington’s Disease. Especially considering the recognition the ice bucket challenge has gotten. I just couldn’t think of the right thing to do. Since HD can impact each person differently, there is not one way to simulate the feeling of having HD. How best can you make a person feel the uncontrollable chorea that affects a person? How can you simulate the lack of coordination or cognitive ability that can be common of a person battling HD? There really isn’t a way to do that. 

It looks like I wasn’t the only one that was thinking about it, either. A couple of days ago, somebody came up with the Pie in the Face for HD challenge.  It is a fun way to help raise awareness for Huntington’s Disease and to help to wonderful organizations that support people who live with HD.  The challenge: Option #1: Take a pie made out of whip cream in the face and donate $1.00 to the Huntington’s Disease Society of America (HDSA) or WeHaveaFace.org. within 24 hours of being nominated. Option #2 Donate $100 to the Huntington’s Disease Society of America (HDSA) or WeHaveaFace.org. within 24 hours of being nominated. Then nominate up to 5 people to do the same. Post your pictures on You Tube  or the Facebook HD Pie In The Face Challenge page.

 

 

I have an extreme dislike for whip cream. I don’t like the way it tastes and am not a fan of the texture of it, either. I can tolerate in my milk shake if it is mixed up well so that I can’t really taste it, but plain? How can you do that? Well, this is one thing that will make me suck it up and deal. I am all for anything that will raise awareness for Huntington’s Disease. It is a cause that is very near and dear to my heart, after all.  And I will make a donation to the

 

I will tell you that the HDSA funds research for Huntington’s Disease and helps families struggling to survive with HD. They are non-profit organization that is tax deductible. WeHaveAFace.org has the mission simply to raise awareness of the disease by producing a documentary they are putting together to further that effort. They are not a non-profit and so your donation is not tax deductible.  You can chose to support whichever one you choose but Robert and I will be supporting the HDSA.  To donate to the HDSA, visit their webpage. To support WeHaveAFace.org, you can visit We Have a Face to learn how to donate.

 

The coolest thing about this? James Franco has already retweeted it when someone challenged him. Tim McGraw has been challenged, too. I hope it catches on as much as the Ice Bucket Challenge did so that we can raise awareness of this disease and its affects it has on a person. Plus, if it raises money for the HDSA, I am an even happier camper.

 

If you are nominated by me, Robert, or anybody else, I hope you will consider it and take the challenge and nominate your own people. Then, post your video or picture on your Facebook page and on the HD Pie in the Face Facebook page to using #Pieinetheface4HD.  Let’s all raise awareness and some money for Huntington's Disease.

 

Depression, Suicide and Huntington's Disease

There are so many drawbacks to having a disease that people don’t talk about; a disease that most people know nothing about. There is the blank stares you get when you tell somebody about it. Some people just say “ok” in the way that you know they have no clue what you are talking about. Anybody that has had any involvement with Huntington’s Disease knows these responses. We have felt it when we were first made aware of this dreadful disease and still see it when talk to people about it.

Because a disease is not talked about, a lot of the problems associated with it are not talked about either.  However, not talking about it does not make it go away; talking about it does not mean that it is going to happen, either.  Huntington’s Disease has to be talked about so that people understand the illness. It has to be discussed so that others know a lot of the problems that can be associated with the disease. These problems are more than just physical deterioration of the body. Huntington’s Disease is neurological disease. IT AFFECTS YOUR BRAIN. That affect can be mental, physical or emotional and the effects can be varied from one person to the next. The physical signs are obvious. The mental and  emotional ones, though, are often unnoticeable.  Those are the ones that we as caregivers need to look out for. One in particular that needs to be watched out of is depression. 

Depression is real and one of those taboo subjects that most people don’t talk about. As a society, we have all been taught that we should “suck it up and deal”. We are told to put on a happy face and not let the world see what is tearing us up inside. So, that is what we all do. Most of us have no real idea that the person in the cubicle next to us at work is struggling with depression. Do we really want to know? Probably not. We are all to engrossed in our own lives and our own issues to honestly care what the person next to us is dealing with. Plus, when society teaches us not to talk about the depression, it increases the non-caring factor. People with Huntington's Disease often suffer from varying stages of depression and it can have some very unfortunate results. 

Huntington’s Disease has been broken in to three stages. Stage one is before the diagnosis or right after the diagnosis. This is when a person is often dealing with the early onset of symptoms and doesn’t fully understand what is wrong. Stage two is after diagnosis when a person is begin to lose some independence. This is usually the stage where the diagnosed person can no longer work or drive because either physical or cognitive limit their ability to do so. Stage three is the advanced stage. This is where the person can no longer take care of themselves in any capacity and must rely on others. Depression most often occurs during stages 1 and 2.

In stage one, before diagnosis, depression is felt because of the unknown. You know that something is wrong but nobody can figure out what it is. It can make you wonder if maybe you are just crazy in the head. Especially when  you are not aware of the condition existing in your family. As a person who went through numerous physical ailments for several years before the official diagnosis of a rare form of hereditary arthritis, I can certainly relate to that. It is tough when you know that something is going on inside of you that is not “normal” but nobody can figure it out. It can easily lead to depression. On the flip side, if you know that you have a family history of HD and are experiencing some of the early symptoms, it is very easy to get depressed before the diagnosis. You are positive you have the disease because of the symptoms you have. The depressed feelings can increase once the positive diagnosis is confirmed. Interestingly, it is not uncommon for a person with a negative result to have increased feeling of depression, too. Especially if you do not have the disease but a sibling does.

Stage two depression comes in when a person reaches a point where they can no longer do something that have always been able to do. This usually begins with the inability to drive or continue holding down a job that you love. Being unable to do something that you have been able to do your entire life is hard. Reaching the point where you have to dependent on somebody else to take you two miles down the road to go grocery shopping is hard. It can easily lead to depression because you feel like life as you know it is no longer in your control.

Depression can often lead to suicidal thoughts. Suicide is not uncommon in either one of these stages. In fact, it is believed that at least half of people diagnosed with HD have had a suicidal thought at some point in the journey through the disease. These thoughts are often not shared with anybody. The feelings can be kept inside. The most common reasons for not sharing these feelings are the fear of frightening loved ones by sharing these thoughts, fear that nobody will take them seriously, or even the feeling that suicide is an acceptable alternative to dealing with the inevitable future. Many people that have a mental illness of any kind also don’t want to talk about it because there is a stigma that is associated with mental illness that cause someone to feel ashamed of what is wrong with them.  Instead of talking about it or seeking help for these feelings, a person choose to end their life.

As a caregiver, you need to understand that not talking about it will not make it go away. And just because you talk about it the does not mean that it is going to happen. As a caregiver, you need to understand that people want to talk about the turmoil inside them but don’t because they think nobody cares. As a caregiver, you need let the person know that it is okay to have such thoughts. Help them seek help from a therapist or psychologist to properly deal with the issues.  Above all else, let the person know that you  love them and want to have them in your life regardless of what state they are in. One suggestion that I read is to say something every day that makes you grateful to have them in your life. Another one is to talk to the person about that suicide would affect you and those around you. Let them know that it will be harder for you to live knowing they chose to take their own life instead letting the disease run its course.

If you think someone you know is considering suicide for any reason, get help. You can call theNational Suicide Hotline at 1-800-273-TALK. You can also visit HDReach.Org for more information about depression and suicide in people with Huntington’s Disease.