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

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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.

Visual Cues to Stimulate a Conversation

The other night was our monthly Huntington’s Disease support group meeting. They are always fun to go to. You get to talk with a bunch of people that an fully appreciate exactly what it is that you are going through on a daily basis in this world of Huntington’s Disease. We often share ideas of how to cope with certain issues as well as offer support to those who may be struggling.

This was one of those time where one of the members shared a really neat idea for connecting with his friend. Steve* and Chris* both enjoy watching a TV show and often like to discuss it afterwards. Of course, since Chris has progressed to the mid – to – late stages of HD, he often has time fully recalling and communicating his thoughts on the show. So, Steve came up with a genius idea to help the conversation along. He watches the show on his tablet and takes screenshots of parts of it to talk to Chris about. Then, when he is with Chris, they scroll through the various screen shots and are able to discuss the show. It is a great conversation starter and it provides visual clues to help Chris recall the moments and communicate about them.

This isn’t the first time I have heard using visual clues for someone with Huntington’s Disease. I have shared previously about something I read once about creating a scrapbook of memories for important events for a person in the later stages of Huntington’s. This allows the person to look through the scrapbook and provides the visual cues to access those memories and talk about them.

We all struggle from time to time communicating something that we want to say. So, we can relate to the struggle that a person with Huntington’s Disease has a continual basis. Most of the time, the memories are still there and the desire to communicate and talk about them is there as well. The problem is the short-circuited brain that no longer has the link to quickly communicate it and talk about it like you and I have.

So, the next time you want to talk about the TV show, consider this technique and see if it will help. I think it is something that I will keep in mind for the future so that Robert and I can talk about some of our favorite shows. But, Robert, please note, I still won’t watch the Walking Dead. Even if it is for a good cause. Maybe you can talk your brother into that one. 

*Names were changed to protect those who may not want to share their diagnosis. 

Putting it In a Different Prespective

I love reading! I read something just about every day for total fun. I am a definite book worm.
I also like to read books that I have read before. I have many books that I have read multiple times. It seems that every time I read a book, I catch something that I missed the last time I read it.

Such is the case with Inside the O'Brien's by Lisa Genova. I just finished reading it for the second time a few days ago. There was a small little portion that really stood out to me. Kind of a wow moment for me.

First, for those of you that have not read this book... It is the story of a family living with Huntington's Disease. It begins with a diagnosis of the dad (Joe) in the family when there was no known history of the disease. Of course, after the diagnosis, it becomes clear that his mom had it and that was her problem when he was young. Throughout the story, the family of 6 - mom, dad and 4 children must deal with the disease. You get a glimpse into how they do it. It is great story for anybody that everybody should read. I thoroughly enjoyed it.

What hit me this time is one small part of it towards the end...

Joe, his two boys and a friend are all at a Red Sox game. Joe is looking around the stadium that has approximately 37,000 people. He has this moment where he can't seem to focus on any of these faces around him when it hits him. The number of people in this stadium is equal to the approximate number of people diagnosed with Huntington's Disease in the country. Yes, a stadium full of faceless people is about the number of people in this world that have Huntington's Disease. Only, to Joe, his family, my family and all the other families dealing with this disease, those are not faceless people. Each one of them has face and an identity and a family around them.

Granted, this stadium of people is small compared to the numbers of people that have cancer or Alzheimer's or ALS or any other number of diseases that a more well known. I know there are so many more people out there that are dealing with these other diseases. I don't mean to diminish them or make them seem insignificant because I know they are not. But, for the family that is living with a diagnosis of Huntington's, that stadium full of people is a significant number.

The other thing is that the number of people that fill that stadium are the ones that have been diagnosed with Huntington's Disease. Not the number of people that are affected by it. Let's be honest here. As anybody with any type of disease can tell you, it is more that just the diagnosed that are affected by it. The family and friends that care for that person are also affected and living with the diagnosis as well. So, in reality, the number of people affected is larger than just the size of the stadium. If you add in the number of people who could potentially be living with the disease but have not yet been diagnosed, the number of people grows to more than just the size of a stadium.

The reality is, even if the number of people who have Huntington's Disease fills Fenway Park or a high school football stadium, it is still too many people. Even if it was only enough to fill the benches at a pee-wee football game, we need to find a cure. We need to stop another family from suffering the way Robert's family has, the way the O'Brien's did or the way the families of those 37.000 in Fenway Park suffer do.