The Health Of A Caregiver

If nothing else, the last few months since I last posted anything, I have been reminded of the importance of having a good support system. Having people you can depend on to help you when you need it the most makes everything so much easier.

No, nothing is wrong with Robert. His symptoms have not gotten worse. Instead, I have had a rough time with my own health issues and they have taken a toll on both of us and impacted our day to day life.

About five years ago, I was diagnosed with a very rare but very severe form of arthritis. An auto-immune type of arthritis that makes my body attack itself. It causes all kinds of fun stuff like bone fusion, inflammation of bones, swelling in joints and stiffness all over my body. For me, the worst areas happen to be my lower back and my hips. Some days just putting one foot in front of the other is a trial. Not to mention being more suseptible to picking up all the nasty germs that get passed around

It took a long time for the doctors to even figure out what the problem was. When I first started complaining of arthritic like symptoms around the age of 25, the doctors told me there as no way that  could have arthritis. I was too young for something like that. It took almost 10 years before I was able to convince a doctor to do the testing and in fact diagnose me with Ankylosing Spondylitis. So, the damage to my body has been fairly signifigant because I went so many years without treatment.

Plus, to add a little more fun to the mix, my body does not tolerate most prescription pain medications. They tend to make me very sick. So, I can take Tylonel or Alleve but not much more.

I am in chronic pain. I have learned to live with it. However, lately it is sometimes more than I can bear. I have missed more time from work in the last four months than I have since my intial diagnosis. My weekends are usually spent doing a very limited number of things. Since grocery shopping on Saturday and going to church on Sundays tend to be a top priority, many weekends, that would be the one and only thing I did each day. The effort it required to accomplish that one task each day was so draining after a week of work that I would need the rest of the weekend to recuperate so I could make it through a week of work. All the while trying not to let on to those around me how bad things really are.

Luckily, I have begun doing some physical therapy and chiropractic care and in the last couple of weeks, I have started feeling more and more like my old self again. I still find the pain to be unbearable some days, but I was actually able to do some stuff around the house besides laundry this weekend and not feel totally drained the next day.

I say all of this not to get sympathy from anybody but to provide a bit of an understanding of my overall point. My point is to highlight the fact that we all need to build support systems for when times are tough. Right now, I have a great support system in the form of my wonderful husband. He has been the one doing most of the house cleaning and letting me relax and rest as much as needed. I am so grateful to him for being there for me. However, I am cognizant of the fact that one day, he won't be able to do that.

One day, he will be in the late stages of HD and unable to clean house for me. One day, I will be his primary caregiver and will have to be able to take care of him in all capacities. That is Huntington's Disease and the reality of things to come. If the last few months have taught me anything, it is that I will not be able to do things by myself.

The nature of the disease that I live with is that it, too, will continue to progress and worsen as time goes on. I get what the doctor calls flare ups. Some days, it just seems worse than normal. The flare ups are bad. Especially when they seem to last for months instead of just a day or two.  So, that means that I will have to have assistance in caring for my husband at some point in time.

Knowing all of this puts emphasis on the fact that I need to take care of myself if I am going to be able to take care of him. I have to be healthy and able to do things if I am going to be able to do for him.

The same can be said for any caregiver. You have to take care of yourself and make sure you are healthy. You have to take time to make sure you, too, are getting the care that you need, the rest your body requires and the mental breaks that you need. This is a necessity if you are going to provide the best possible care for your loved one. Part of doing this involves making sure you have a support system in place to assist you when you have a bad day.

You will not be able to do it all by yourself. Start making plans today with those friends and family you know you can count on to help you when you need an extra hand. Waiting until you have reached the point of needing help may be too late.

A Huge Victory for HD Patients

Something good has happened this week. Something that brings relief and help to so many families dealing with Huntington's Disease.

From the beginning, the Social Security Administration has defined Huntington's Disease as a movement disorder only. However the chorea is only one symptom of the disease. More often than not, chorea usually appears in the latter stages. It is usually not one of the first symptoms of the disease. Instead, there are other issues first. The cognitive problems and mental issues associated with Huntington's Disease are just as problematic and make their appearance much earlier in the progression of the disease. These cognitive and mental problems can make it difficult to keep a job. Unfortunately, the SSA didn't recognize those as part of the disease and made it difficult to get approval for disability at a time when a person really needed it.

That all changed on July 1st.

On July 1st, the Social Security Administration adjusted the criteria for Huntington's Disease. It now recognizes that HD is so much more than just the chorea. It is mental issues. It is cognitive problems. 

What does this mean? 

It means that the new rules that go into affect on September 29th will make it a bit easier for the people around the country that find themselves in a position of no longer being able to work because of the way HD has begun its attack on a body. It also helps many of the other neurological diseases out there. 

Read full details Here.

But, the fight is not yet over. Even though it is easier to get approved for Social Security Disability, a person with HD still has to wait two years before Medicare kicks in. Part of living with this disease is to receive the proper care and assistance. This might mean medication or some sort of assisted care depending on how far along a person is in the disease. Waiting two years for Medicare can honestly be a difference of life or death in some of these people. It is important that we continue to work to change this as well.

For today, though, we will celebrate a huge victory in the battle against Huntington's Disease.

Appreciation for the Caregiver

The keynote speaker at the HDSA Convention this year was a guy by the name of Peter Rosenberger.

Long story, short, he is the caregiver of his wife who was in a car accident over 30 years ago and has endured 70+ surgeries, over 9 million in medical bills and amputation of both legs among many other issues. 

So, obviously he has a lot of experience being a caregiver for someone he loves. He brought so much fun and laughter to those of us who are or will be caregivers for a loved one. He also had a lot of wonderful advice on how to not lose yourself in the mist of being the caregiver. But that isn't what I wanted to talk about today. Instead, I wanted to talk about a question that somebody asked during the question and answer period. It is something that still bothers me several days later. 

The question?

How do you feel appreciated when the person can no longer tell you they appreicate you?

You could tell that Peter was a bit surprised by that question. I was, too.

As caregivers, we aren't doing what we do to get appreciation from the person we are taking care of. If that is the reason you are taking care of the person, you are doing it for the wrong reasons. Today, I cook dinner for my husband, do his laundry and clean the house because I love him. Yes, I do like it when he tells me thanks for doing that or says that he appreciates me, but I am not doing it to seek his love and appreciation.

I don't mean to make light of the fact that being a caregiver is hard work and can be one of the most thankless jobs out there. It is tough and overwhelming and tiring and emotionally draining and so many other things. It can be made even worse when the person cannot tell you thanks for the wonderful job you are doing. However, I don't think you should be doing the job if you are seeking appreciation and thanks from the person you are taking care of. If you have reached the point that you are feeling unappreciated for all of the hard work you doing to care for a person whose brain is being destroyed by his or her own body, are you truly providing the best care for the person?

Later that night, Robert made it a point to say that he already appreciates everything that I am going to do for him because he knows there will come a day when he won't be able to tell me that. My response was that I will not be doing it for his appreciation but out of love for him.

I will also say that I do appreciate Robert's brother for all the tine he spent taking care of their mother.  I know that it was not an easy but he did a great job. I also know that their mother appreciated it a lot and was very appreciative of all he did, even if she couldn't tell him she was herself.

Finally, I will leave you with the words of Peter himself as found in his book Hope for the Caregiver. 

The one we care for may not recognize or even appreciate what we do on their behalf, 

AND THAT'S OKAY -

If we love them we're doing it for their benefit, not ours.

What a Week it Was

Things are always better when they are free. Right!?

I have to say that the last week would have been wonderful even if it wasn't free, but that did make it a little bit better.

Back at the beginning of the year, I submitted my application to the HDSA for a scholarship to attend the annual convention located in Baltimore the first weekend of June. I thought I had read that winners would be notified around the first week of April. When I didn't get an email that week, I was bummed because I figured I didn't win. So, when I got an email around April 20th saying that we were awarded a scholarship, I was over the moon. I am not sure there is even a word to describe how excited we were. HDSA covered three nights at the Hyatt where the convention took place, all convention activities as well as reimbursement of the air fare to and from Baltimore the moment we checked in at the convention registration desk. 

It was made even better by learning that we could fly up the weekend before the convention and spend some time with one of Robert's brother and his wife. Since it is roughly a 20 hour drive to get to their house, it isn't as easy to hop in the car and drive over. It has been a few years since we have seen them. One of his other brothers even made a six hour drive from North Carolina to spend some time with us. Great way to start a week of vacation. 

We flew up to Baltimore on Sunday, were met by Robert's brothers and spent Memorial Day on his brother's boat near the Potomac River. We then spent a couple of days with them at their house up in the mountains of West Virginia. It is all beautiful country.

Then, Thursday morning, we packed up and headed to the Hyatt Regency of Baltimore that is located in the Inner Harbor. We could see Camden Yards from our hotel - if only they were playing the Rangers instead of the Yankees this past weekend. We could also see the field were the Baltimore Ravens play but that means nothing to me.

It is a beautiful hotel and a very nice area. There are historic boats you can tour, lots of seafood places to make Robert happy and some neat shopping spots. We enjoyed walking around and checking it all out Thursday night. Then, the real reason we were there got started Friday morning. 

It was 48 hours of so much useful information, so much hope for the future and even some laughs and fun times talking with people that know exactly what it is that we dealing with in our journey along the road named Huntington's Disease. 

I picked up tons of materials from presenters, the different vendors and took lots of notes from the workshops that we attended. An added bonus was the caregiver support group that I went to that was lead by the HDSA social worker that oversees our local support group. We also got to dress up and attend a gala and play some fun carnival games and get tattoos. Now, those tattoos may have been temporary, but they were still fun.

I have lots of information that I received that I want to share with everyone and hope to do that over the next few months. Things like the awesome chairs we saw that are actually designed for people with a disease that has the chorea often associated with HD and the amazing info they shared about the testing of a gene silencing drug.

 I will say that if you ever have the opportunity to attend the annual convention that the HDSA does each year, take it! It was so amazing that I want to go every year, even if it means I have to pay for it out of pocket. 

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

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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.

If I Had Known...

I heard it again the other night. A statement somebody made that I had to bite my tongue harder than I ever have in my entire life to stop from saying anything...

"If I had known he had Huntington's Disease, I never would have had children"

We were at our monthly support group meeting and a mother made that statement. Now, to clarify, she was upset. She had lost her husband, one daughter and was dealing with a second daughter who was in denial that she has the life robbing disease. Her husband was diagnosed with the disease after they had children. The second daughter is refusing any treatment to manage the symptoms and is refusing to talk to her mother. So, I can understand how she would feel that way at the moment. I can only imagine what it would be like to bury a child. Nobody should ever have to do that. It is not the natural order of things. 

I can understand the thought process to an extent. Robert and I struggled with the decision to have children because we knew that we risked bringing a child with Huntington's Disease into this world. In the end, for reasons that have nothing to do with his diagnosis of Huntington's Disease, we did not have children. Plus, I can imagine that she feels a lot of guilt because she brought her children into this world and they have this disease. Hindsight is 20/20, though. It is much easier to look at how you might have done things if you had all of the information, but that isn't the way the world works.

That same statement is one that Robert's grandmother made on more than one occasion. She even told me that I should never have children, either. She said I had no business having children because they might have this awful disease. That always made me so upset. Saying that is wishing Robert away. To me, it is saying that his life wasn't important and that he doesn't deserve to be here. It is saying that the man that God chose for me shouldn't be here. I disagree with that. 

One of my favorite movies helps explain why I have a huge problem with what she said. It is defined as a Christmas movie because it takes place on Christmas Eve. However, the meaning applies every day of your life. I am referring to It's a Wonderful Life. If you are not familiar with the movie, the gist of it is that a man wishes he wasn't born and is shown how different life would have been for so many people he knew as a result. Once he realizes how much he helped those around him, he realizes that it does have a great life and that he had a huge impact of those around him. 

One of my favorite quotes is in this movie... 

"Strange isn't it. Each man's life touches so many others. When he isn't it around, he leaves an awful hole, doesn't he?"

I can tell you that if Robert wasn't around, there would be an awful hole in my life. I am betting that many of you reading this can say the same thing. Robert has touched the lives of his brothers, sister, daughter, co-workers and friends. Plus, there is all of the kids that he teaches on Sunday mornings. Kids who still run up to give him a hug when they see him at church years later. And that is only skimming the surface of the people who he has touched. If he wasn't around, what would we be like?

Her statement was also hurtful to Robert. He said that it made him feel like he had no right to be here. It was if she was saying that he wasn't good enough to be alive because he has Huntington's Disease. That is wrong. 

The reality if that any one of us could be hit by a car on the way to work tomorrow or have a some other catastrophic thing happen to us. For all I know, Robert may never develop symptoms of the disease because he will die some other way. Instead of making hurtful statements like that, we need to enjoy each moment we have with that person in our lives that has tested positive for Huntington's Disease. 

So, if you are thinking that you wish you didn't have your children because they have HD, don't dwell on it. Instead, be grateful for the time you have together and consider the impact he or she made on your life and the world around you. Chances are, the world is a better place because your child was a part of it.