Let's Talk About HD

I was working on a blog during my lunch hour one day. Somebody asked me what I was doing and I told her I was writing a blog. She rolled her eyes and made some sort of comment under her breath about it.

I have gotten that response more than once. I have been asked why I feel the need to blog and what makes me think I am so special that I need to write about anything. 

Truth is that I am not all that great. I am not anybody special; I am not better than anybody else out there. I don't write for recognition or for followers. I do it because I want others to know about this disease that has become such a major part of my life and the lives of many that I love.

I have heard or read so many stories in the last 13 years that always begin along the lines of "We knew something was wrong with so and so, but we didn't talk about it" or "Huntington's Disease wasn't something we talked about in our family, even though we knew so and so had it" or any other number of similar conversations. The point being, nobody talked this disease; even when it was part of your own family.

I personally hadn't heard anything about it because I had never been in contact with anybody that had been affected by the disease. Once I met my husband and learned about the disease, I found it amazing how many people in my own little sphere knew somebody that was somehow affected by the disease. But, still nobody talked about it. 

That has to change! We have to talk about this disease and raise awareness for it. The more we talk about it, the more people begin to understand and help to find a cure. 

You Talk About It Too Much

Somebody told me the other day that I post too much about Huntington's Disease on Facebook. i talk to much about it. It isn't that big of deal. Really?

So, I asked her if she thought that they talked to much about Alzheimer's since I hear something about it at least once a week. She said no, because that is a serious disease that they need to find a cure for. It destroys so many families. I told her that was true and asked if she felt Parkinson's and ALS were talked about too much. Her response was the same. They are both horrible diseases that affect so many people. Again, I agreed with her. Then, I posed this question: What if somebody had all three of those disease at the same time? Would that make it a serious issue? That stumped her for a moment before she answered that there had never been such a case.

My response?

Now, if you want to get technical, that is probably true. I haven't researched that, but I have never heard of a person that was diagnosed with all three of those diseases at the same time. But, I have heard of thousands upon thousands of people who have been diagnosed with Huntington's Disease - which has been characterized as having all three diseases (Alzheimer's, Parkinson's, ALS) simultaneously.

I will not apologize for talking about it too much. 

It is not talked about enough. I know the statistics that say that approximately 20,000 people in the United States that have been diagnosed with this disease. I know that there are approximately 100,000 people in the world that are classified as living at risk - meaning they may have the gene in them but have not been tested to know on way or another. I know that the number of people living with Alzheimer's, ALS and Parkinson's are much higher. However, for the family and friends of those 20,000 people living with the disease and the thousands that are living at risk, it is a big deal.

I will continue to talk and post and share about Huntington's Disease. I am not going to stop because someone thinks I talk about it to much, It matters to me and those I love dearly. Education and awareness is the first step in finding a cure. The more people are educated, the more people that can work to find a cure for this disease.

Let's Talk about HD

This is a blog that I originally wrote back in 2011 when I first started this blog but have never shared for a lot of difference reasons. I have finally decided to share it because it highlights the importance of raising awareness for those that suffer from it. Suffering goes beyond just the person diagnosed. It affects the family and friends of that person as well. The more awareness we raise, the more people understand and what to help. To raise awareness, we need to talk about HD

*************************************

Okay, so I would never honestly wish Huntington's Disease on anybody - not even my own worst enemy.  It is a horrible disease that destroys lives and families and will continue on for generations until treatments or a cure can be found.  So, it is tongue in check so to speak that I say I wish someone famous was living with Huntington's Disease.  The only public figure that has been diagnosed with the disease and discussed it publicly would be Woody Guthrie

Who?  Woody Gurthrie was a folk singer in the 40's and 50's who wrote songs such as "This Land is your Land" and many others (Woody Guthrie). He died in the late 60's so most people my generation and younger really don't know who he is unless you grew up on folk music. I was raised on a lot of this type of music, so I can say I actually knew who he was.  However, since he succumbed to the complications of the disease nearly 50 years ago, he is not around to help raise awareness.

So, why would I want a famous person to have it? Who do you think of when I say Parkinson's Disease?  Most likely some of the first people that come to mind are Michael J Fox and Mohammad Ali.  Both public figures that have been diagnosed and are living with Parkinson's Disease. They have helped to bring notoriety and funding to help the fight of Parkinson's. And what about ALS?  This is often referred to Lou Gehrig's disease after the famous baseball player that was diagnosed with disease.

Having the association with a famous person helps in many ways.  When a person learns that one of their favorite actors or athletes has been diagnosed with the disease, they work to learn more about it.  It can also lend support to funding and research of the disease.  I want that kind of attention for Huntington's Disease.  I want others to know and understand what only a handful of us do today.  I want to be able to say that my husband, my sister-in-law or even my bother-in-law has Huntington's Disease and not be looked at with that clueless not understanding look.

The disease has been mentioned in a handful of shows - House, Private Practice, Everwood and Grey's Anatomy - but not enough to fully document or explain the disease and allow people to develop an understanding of what it is and how it affects the people diagnosed or those that they live with. There is very limited knowledge about this disease and I want more people to know.

For the sake of the disease, I think it would be helpful and beneficial if we could all point to someone well known who has this disease.  Funding for more research for treatments or a cure would be so welcome by my family and many others that we  know. So, yes, I do sometimes wish a living famous person of this generation did have the disease.  For the simple reason that I don't want to another family to have to suffer and endure what Robert's family has for many generations and the turmoil they still have yet to face.

So, #LetsTalkAboutHD

Music Therapy

A friend recently shared a video on Facebook that showed how music therapy was helping older generations recall old memories and connect with their family through music. It would take them back to a previous time and memories. Even for those who we suffering from Alzheimer’s and Dementia. The music was a way to connect to a previous time that they still had in their memory. Not to mention that it also brought smiles to their faces and got them moving even if it was something as simple as tapping a foot in a wheel chair. Check it out here

I am a firm believer in the fact that this works. I got to see it in action. Robert’s mother loved Elvis. She would always play his music and watch his movies with her kids. Robert and his sister have told me many times of memories that involved Elvis’ music in some way. Robert enjoys listening to Elvis and remembering those times growing up before Huntington’s Disease robbed him of his mother.

Even when she was at the end of her life, Cheryl still loved Elvis. She watched Elvis movies all day long. If there was not a movie playing and you asked her if she wanted to watch Elvis, her face would light up and you could tell she was trying to dance. Even when all she was constantly fighting the uncontrollable chorea and couldn’t say a word, you could tell that she remembered Elvis and his music. And when it played, she wanted to get up and dance. That never changed.

Music therapy is legit. It can help in so many ways for a person that is struggling with Huntington’s Disease. It can take a person back to a time and place when life was different. It can provide a connection to a memory and time shared with a friend or family member that you can both recall, even if she cannot communicate in words what she is thinking and feeling. You know what he is thinking about because you were there with him and can share the memory of that moment together.

I think I want to begin a "Soundtrack of our Life", full of songs that have memories attached to them so that Robert and I can listen to them and remember those times. That way, even if he can't tell me with words about a specific time, we can use a song to take us both back to that time. 

It's Not the Huntington's Disease

Okay, so the issue Robert has been dealing with for what seems like forever, is not caused by Huntington’s Disease. That should be a good thing. Only, it really isn’t. In his own words “As if I didn’t have enough to deal with because of Huntington’s Disease…”

He has what is called Eosinophilic Esophagitis. Short story version is that it is an allergic inflammatory condition of the esophagus where the white blood cells attack the food while it is still in his throat and create a sticky substance within his throat. Then, because it is sticky, more food sticks to it and creates more issues swallowing.

This is a concern for us because of the situation with his mother. The esophageal sphincter (the small flap that covers the windpipe when eating or drinking) stopped functioning properly. This is not uncommon for a person with Huntington’s Disease. This is why most of them wind up on a feeding tube towards then end stages of the disease.

So, if Robert has an issue with food getting stuck in his throat and his sphincter stops working, that just adds a whole other set of problems we did not anticipate dealing with.

What does all of this mean?

Well, we aren’t sure yet. The inflammation is most likely caused by allergic reactions to food of some kind. In other words, food is making him sick.  It can be treated any number of ways. The first step is for him to take an acid inhibitor (read Prilosec or other acid-reflux medication) and see if that helps. That is where we are at today.  Let’s pray that works! He goes back to the doctor in 6 weeks or so to have another endoscopy done to see the results.

If there is no improvement, the next step is food allergy testing to determine what foods are causing the issue. The most common allergies are dairy, wheat and beef. Once they are determined, the food is eliminated from the diet and see if the condition improves.

After that, if he still has issues, he will then have to have a procedure where they insert a tube down his throat that will stretch the esophagus and thus make it larger and allow food to pass through.

Obviously, we hope and pray that the first phase of treatment is all he needs.  We will know for sure in about six weeks.