It Was My Choice

I guess I am the lucky one. I got to chose if I wanted to make Huntington’s Disease a part of my life or if I wanted to get as far away from it as I possibly could.  My now husband and I had been dating only a few weeks when he dropped the bombshell on me that he had HD.  At the time, I wasn’t sure what that meant or what it would entail.  I did some research to find out what it was, spent some time talking to his sister who has the disease and spent a lot of time praying for guidance on whether I not I should end things with him or keep on seeing him.  Considering we are now in our 6^th year of marriage, I am sure you can figure out the outcome.

So, why did I decide to stay with him knowing that one day I might lose him? And that it would be one of the hardest things I would ever have to endure while I watched him slowly deteriorate right before my eyes? Simple answer because I loved him then and love him today. When it is all said and done, I would rather enjoy five or ten years of great times and wonderful memories over living without him in my life. I still felt that way after I spent time with his mother who was already in the advance stages when I met her.  Just because I knew that one day I would see Robert suffer the same way she did, it did not stop me from loving him. And I wasn’t about to spend my life worrying about what was going to happen ten years down the road.  For all I know, we might die in a car accident on the way to work tomorrow, but that doesn’t mean that I stop going to work every day. I chose to take the time we could have together and enjoy it to the fullest and not worry about what tomorrow brings. 

Plus, I also put my faith in God that he would see us both through this and any other issues we might face.  And I take comfort in the reminder that God never gives us more than we can handle.  He is always there to help us through whatever he throws at us.  So, He must know that Robert and I can handle this whole thing together. He brought us together and has given us this life to share with all of the good and bad parts. 

I thank God every day for bringing me such a wonderful man and his great family.  I know it will not always be easy, but I am not going to let that sway me.  My only regret is that Robert and his family did not get to make that choice.  I still pray that one day that will be a cure to this deadly disease and no one else will suffer.  Until then, I will enjoy ever minute I can with him and not worry about what might come tomorrow. It may not have been the popular choice but it was my choice and I do not regret making the choice I made.

Progress of the Huntington's Disease Parity Act

Well, it seems progress has been made. The Huntington's Disease Parity Act of 2011 has been referred to a committee to determine if it should move forward to the floor in the House of Representatives. While that is progress, it is still not enough. If this bill is not put to a vote before then end of the Congressional Session next year, it will be considered dead and we must start again. That has already happened in the last two sessions of Congress.  The committee never reported on it and so it never went to the floor for a vote.
Both the Senate and the House of Representatives have a bill before committees for approval that will help the many families affected by HD obtain disability funding before it is too late. And since we just got a new batch of paperwork from the Social Security Administration that we must fill out for Bill in the appeal process, this can not happen soon enough.

I have read many different blogs about the devastating financial aspects the disease has on a family. So far, we are lucky that we have a good insurance plan through my company that can drop us because of Robert's diagnoses.  He is able to have a CT Scan done each year for minimal costs to monitor the deterioration of his brain.  He is able to obtain medication that help to slow the progress of the disease and prevent the leg movements that sometimes result in me kicking him out bed. And, as long as I am able to work for the company I am currently employed by, I will be able to provide this insurance.  When it reaches a point where Robert can no longer work, though, it will become a burden to us financially. Fighting with the Social Security Administration is not something I am looking forward to.

Bill is not so lucky.  He is no longer able to work for a wide variety of reasons.  He does not have health care.  He is suffering from the disease more than either Robert or Debbie are. As the oldest, his body has more of the mutated gene running through him and it has affected him. Plus, since he does not have access to the expensive medications that will help slow the progress of the disease, he is at a disadvantage there as well. Robert and I can provide a roof over his head for a time, but we cannot provide him with the doctor's care and the medications he needs.  Without insurance, we cannot afford it.  Plus, there will come a time where he will have to be moved to a nursing home or assisted living facility.  Even if we compiled our resources with those of their sister, Debbie, we would never be able to afford to put him in a home that he could live in and still maintain some since of dignity.

I hope you will join the fight with me and let your Senators and Representatives know how important this bill is and why it must be passed and not wind up dead for the third session in a row.

Changing The Definition Of Huntington's Disease

The definition of Huntington’s Disease used by the Social Security Administration is so outdated it causes many to be denied disability coverage the first time. According to the SSA, Huntington’s is simply a movement disorder. This definition does not take into account those that have issues with memory and thinking processes or behavioral or other psychological problems. And since each person’s progression in the disease is totally different, the person seeking disability may not even have the physical symptoms until the final stages when they have already lost the ability to process normal thoughts and actions. As a result of this incomplete definition of the disease, many are denied disability coverage.

My brother in law, Bill, is one of them. Physically, he does appear to be fine. He does occasionally have some trouble walking and maybe a little bit of difficulty swallowing; his real symptoms are more cognitive. His memory is unreliable. He has a hard time following through in some thought processes. For example, if he wants to cross the street, he simply starts walking across the street. His brain has trouble processing that he needs to make sure to check for any cars coming before he starts to cross the street. He is also affected mentally and emotionally as well. He is easily agitated and can lash out in anger or burst out crying for no real reason. Obviously, these are not physical issues.

For the several months, we have been working to get him approved for disability so that we can set up in a home of some kind, but it is not going well. In the first round, he has already been denied. Basically because the SSA believes there is no physical reason that he cannot work. And based on the SSA’s definition of the disease, that would make sense. He has no physical symptoms, so he must not have the disease is pretty much what they think. This has to change. The definition of Huntington’s Disease used by the SSA needs to change to cover all symptoms and make it easier for families to obtain disability when a loved one is no longer able to work and provide for themselves or their family.

Right now, there is a bill before Congress that will redefine the definition of Huntington’s Disease called the Huntington's Disease Parity Act.   This bill changes the definition to include the other symptoms of the disease  and not just the movement disorder that it was first defined as. In addition, this bill will also waive the current 24 month waiting period before someone can be covered by Medicare. For people such as my brother-in-law, this is very important. Currently, he is not being treated with any of the medications that are available to help minimize his symptoms. And, if he was approved for Disability today, he wouldn’t be able to purchase insurance and still be able to pay for a place to stay. Plus, he needs some of the medicines that they prescribe to Huntington’s patients today so that he might be around in two years when Medicare would kick in. But, if he can’t pay for it, how can he get the medications to survive the next two years? Of course, all of this hinges on whether or not he is considered incapable of working given his current status within the disease. He is not, but the Social Security Administration believes otherwise, leaving him to either live on the streets or be a burden on family members that are struggling in their own way with the disease.

I know we all have our own views about Social Security Disability and if it is the responsibility of the government to care for those who are incapable of caring for themselves for whatever reason. I am not asking you to do something that you might be against, but I do ask that you at least consider contacting your Representatives and Senators to encourage passage of this bill. First, it will help to raise awareness of Huntington’s Disease and the many ways it effects the roughly 30,000 people diagnosed, their families, and the roughly 250,000 that are at risk for developing this disease. In addition, passage of this bill will help to provide the necessary medical treatments much earlier than before for people such as my brother in law, who is single, unable to work and could not afford the cost of health insurance if he was to be approved for disability. Please consider contacting your House of Representatives (https://writerep.house.gov/writerep/welcome.shtml) or your Senators (http://www.senate.gov/reference/common/faq/How_to_contact_senators.htm) to encourage passage of The Huntington's Disease Parity Act.

You can read the details of the bill at http://www.govtrack.us/congress/bill.xpd?bill=h112-718

Thank you for your help and support!

How Will This Show Tell the Story?

Most television shows that mention Huntington’s Disease only do so in passing. Few really take the time to make it a major storyline. In fact, the number of show that have made it a true part of the story can probably be counted on one hand. So, I was very surprised when I sat down to watch an episode of Private Practice. Okay, so I am a bit behind. I have only just now sat down to watch and episode of Private Practice that aired a few weeks ago and had a Huntington’s Disease story line. Part of the summary is that a friend of one of the doctors threatens to kill herself if she test positive for the Huntington gene. I have to admit, that ticked me off. Why would a person do that? However, after watching the episode, I have to say they did a fairly good job of giving a bit of insight into the disease and what in can lead to. Essentially, after having recently buried her mother due to the Huntington’s Disease, Michelle debates getting tested. She says that if she test positive, she is going to kill herself because she doesn’t want to live life the way her mother did. Seriously? So, one of the doctors (Amelia) convinces Michelle to get tested and then lies about the results saying that Michelle does not have the gene when she really does. And all of a sudden Michelle’s world can go on. I wanted to throw something at the TV at this point in the whole storyline. Amelia thinks she is helping Michelle by allowing her to think that she doesn’t have the gene so she can go on living. While I admit that as the disease begins to take control of a person’s body, the outcome is not pleasant. However, should a person stop living today because of something that most likely won’t happen for many years down the road? In the end, Amelia felt guilty and came clean with Michelle letting her know the truth of the test results. Michelle is devastated and debates if she wants to end her life. Amelia finally convinces her that she needs to live for today and not worry about what will happen down the road. She doesn’t have any of the effects of the disease today and may not for many years to come. For all they know, Michelle might die in a car accident tomorrow but that doesn’t mean she stops leaving her apartment. And Amelia convinces Michelle that life does go on and that as a friend – who happens to be a doctor – she will be with Michelle every step of the way. Now the part where Amelia hints that she would be willing to help Michelle end her life when the disease begins to take control is a subject to discuss in another blog. I do have to give kudos to the show. They did a good job of describing some of the physical side effects that the disease can have on a person, but they took it a step farther. They took time to highlight the effects on the disease on family members as well as the personal struggle each person has as the decide whether or not to take that step to be tested. Not many shows have taken the time to do that. Thanks Private Practice for allowing everyone to view a small window into the lives of those that deal with this every day. If you want to check out the show, here is a link. http://abc.go.com/watch/private-practice/SH559070/VD55117689/love-and-lies

What About Adoption

So many people often ask why we haven’t considered adoption as an alternative. It is a great way to allow us to love a child and provide a better life for them than they have now. Plus, there is not a risk of passing on a genetic condition to a child that is not naturally ours. Honestly, we have looked into, talked about it, prayed about and spent many hours thinking about whether it is the best option for us. We have come to the conclusion that it is. We have been discouraged by the research we did that found going through the state will most likely not work. Even though Robert is currently not experiencing any serious symptoms of the disease, the state still does not consider us a good option. They do not like to place a child with a family that has a diagnosed life threatening medical condition. So, that leaves the private adoption route. We looked into this as well. One drawback is the huge expense we would have to pay for it, but that was not the real reason we decided not to adopt. The real reason has to do more with the time the entire process would take and Robert’s life expectancy. Even though he is currently not experience any major symptoms, he will. Based on genetic history of his family, the doctors figure that he will most likely begin to show more pronounced symptoms in his early 60’s. That is about 20 years or so from now. Since the adoption process can be long and drawn out, it might be another five years before we are chosen to be adoptive parents. That means that Robert would only have 15 years with the child, and the child would only have his or her father around for 15 years or so. Robert grew up with a very absentee father to begin with. Plus, his father died when Robert was in his 20’s, so he knows what is like to lose a parent at such a young age, too. Knowing his own health condition, Robert does not want to force his own child to go through what he had to. Plus, he had a hard time watching his mother slowly progress through the disease the last few years and he is much older. To be a teenager and have to watch your father go through the same thing is not something he wants to force on his own child.
In the end, we have counteracted our desire to have kids by helping out at our church and loving on the many nieces and nephews that our families have blessed us with. In addition, he does have a step-daughter from his first marriage that he considers his own and we spend time with her as well. Plus, since we can’t seem to agree on how to raise our dog, we probably wouldn’t be able to agree on how to raise a child either.