Merry Christmas!

Last year, Robert and I sent a gift to his brothers, sister, aunt, uncle and grandmother in hopes of bringing them a bit of comfort and peace as we all struggled to find joy in the first Christmas after loosing his mother, Cheryl, only a couple of months before.  This year, I want to share it with all of you.  For those of you who have recently lost a loved one, I hope this brings you some peace and comfort. It is a beautiful poem and ornament that come as a boxed set.

MERRY CHRISTMAS FROM HEAVEN

I still hear the songs
I still see the lights
I still feel your love

on cold wintry nights

I still share your hopes
and all of your cares
I'll even remind you
to please say your prayers
I just want to tell you
you still make me proud
You stand head and shoulders
above all the crowd

Keep trying each moment to stay in His grace
I came here before you
to help set your place
You don't have to be
perfect all of the time
He forgives you the slip
If you continue the climb

To my family and friends
please be thankful today
I'm still close beside you
In a new special way

I love you all dearly
now don't shed a tear
Cause I'm spending my
Christmas with Jesus this year
Copyright 1990 John Wm. Mooney. Jr.

If you are interested in purchasing one for a friend are loved one, we purchased them at Holy Grounds Gift Shop in Grapevine but you can also find them online, too.  Simply google Merry Christmas from Heaven. 

This year as we s a special place on our tree this year as we pause to remember Cheryl and many others that have gone on to spend Christmas in Heaven this year.

"I Want You To Help Me Die"

Wow!!! I am spending a day working on some homework and catching up on my DVR.  I was 7 episodes behind on Private Practice so I am just now see the episode that was in part a follow up to the one that I talked about a few months earlier. Part of the story was about whether or not the character should get tested for HD after her mother passed away from the disease.  Private Practice Episode
The friend (Michelle) of Amelia's that was diagonosed with HD in this previous episode has just come back from a 6 month vacation in Italy.  She has begun to exhibit tremors and even a few seizures.  Michelle has returned from Italy and told Amelia "I want you to help me die." I will let you make your own choices on how you feel about that statement but I will share my thoughts with you, too. 
Robert has often joked that when he can no longer take care of himself and do the simple things like getting dressed or using the restroom on his own, he wants me to shoot him.  While he does make jokes about it, there is an underlying point to this statement.  He spent time having to change is mother when she could no longer do it herself and he hated every minute of it.  He doesn't want to have to put me or anyone else through it.  It is in part due to his own sense of dignity but also that part of him that does not want to be dependent on anybody else for his own personal well being. So, there is a bit of seriousness behind his jokes.  I get that.  I know my husband and how he thinks and I also know how he feels about relying on someone else to take care of him.  He hates it even now when I try to take care of him in some way when he can do it himself. 
But, help him die? I don't think so! To me, that is playing God.  And last I checked, I am not God and I have no desire to play that role.  I fully believe that God has a plan and a time table for how all of this is going to work out. It isn't up to me or Robert or Michelle or Amelia to circumvent God's plan. And trying to do so can seriously backfire.
Amelia agrees to help Michelle die.  She begins a cocktail of three drugs - a barbiturate that relaxes the body, a paralytic that suppress the body's many different systems and finally a potassium solution that essentially stops the heart and kills the person. When Amelia injects the barbiturate, he causes Michelle to have trouble breathing. Instead of continuing with the process, she tells Amelia to stop and that she doesn't want to die anymore.  Not like that, anyway.  So, she is rushed to the hospital and survives. Then, a few nights later, Amelia comes home to find Michelle dead after she overdosed on Oxycontin or something.
I have so many emotions swirling inside me after watching this episode.  In a lot of ways, it seems to me that she took the chicken's way out of it all. Instead of having to deal with the life that God has given her for whatever reason and she is throwing it back in His face.  She chose to do it on her terms instead of His. On the other hand, I can sort of sympathize with her.  I can only imagine what it is like to have to live with that diagnosis and the many symptoms that are associated with it. Having seen what Robert's mother went through and what caring for her did to him and his brothers, I can see how some people might not want to wish that on their loved ones.  But does that make it right?
When a person makes the decision to be tested for HD, they are required to undergo counseling - both genetic and psychological - as part of the process.  The reason is because of the emotional side effects that come with the diagnosis.  Whether positive or negative, there is an emotional roller coaster that is associated with the diagnosis. Both episodes of Private Practice do a very good job at showcasing the roller coaster ride..  But seeking counseling was not mentioned.  Maybe it should have been.
But, still, that doesn't make what she did okay.  Yes, the disease is brutal. Not only on the person living with the disease but those who have to care for that person, too.  However, suicide is not the solution. And when it comes time, I will not be able to help Robert do it.  I will respect his wishes for the DNR and no feeding tube or any other type of life extending measures. I will not be responsible for playing God though and removing Robert from this earth before it is his time.
And while I do thank Private Practice for shedding light on the emotional turmoil that a person must go through, I think they took the easy way out.  Michelle was in the beginning stages of the disease and still had a lot of life ahead of her.  Yes, she had tremors and they were still there when with medication, but they were not as bad as they were without medication. She could still talk, walk, eat and generally take care of herself. It was the beginning of the symptoms.  Instead of living with the disease and surviving, she decided to make a decision that was not really up to her.  She used her own timetable and played God. She ended her life before it was over and left behind a swarm of people that were hurt because she left them.
Suicide is not the answer.  While the disease is hard for everyone involved - the diagnosed and the caregivers - we have to rely on God to work it out on His terms. And besides, with the many advancements in medications to treat the symptoms and the testing that is being done every single day, there could be a cure for this disease tomorrow.  Do you want to end your life today knowing that tomorrow might be the day that could have saved it and allowed you to live a normal life?
If you want to see the episode, here is the link to it.  Private Practice - I want you to help me die.

In Memory of a Very Special Lady

When I first met Cheryl Everett, the disease had already started to rob her body. She constantly trembled or shook. Not majorly thanks to medications but it was present, none the less. She was beginning to have difficulty speaking, too.  She knew what she wanted to say but sometimes had trouble making her mouth cooperate.
But what I took away from that first meeting that sticks with me seven years later are two things. Her ever present smile and her unmistakable  love for her children and family.  Well, three if you want to include the part where she said she liked me much better than Robert's first wife. We had some wonderful talks about her 2 favorite subjects - the Dallas Cowboys and Elvis Presley.
Since she lived with her mother and sister in Cleveland and then in Virgina with Robert's brother Craig, we didn't get that many opportunities to spend time with her. However, we did see her a few more times. And each time, you could clearly see the progressions of the disease.  When we saw her a couple of years later, she was using a walker and struggling to say even a few words.  Fast forward a couple of years, she spoke sentences of single words and had a feeding tube.  She could no longer sit in a chair for very long because her uncontrolled jerking would cause her to fall out of a chair.  Then, by the last time we saw her in 2009, she couldn't talk at all. 
However, even when she couldn't talk, she could still smile.  To the very end, she would always smile.  And if you asked her if she wanted to watch an Elvis movie, she would get very excited as if she was ready to get up and dance to Elvis singing.  Just like she did when her children were growing up. She loved Elvis and one of his movies never failed to make her happy.
On October 14, 2010, the Lord took Cheryl Everett home.  While we all mourned her loss, we knew she was no longer suffering and that was dancing with Elvis.  She will be missed by many but each person she touched in her life still carries a piece of her with them.  And she lives on in the lives of each one of her children in some special way.
Cheryl, we love and miss you.  Our lives are better for having known you.

Blessings

Sometimes, we often wonder where the blessing is in the bad things that happen in our lives. Where is the blessing of watching a child fight cancer? Where is the blessing of not being able to communicate with your mom because a disease has taken away her ability to speak? Where is the blessing in watching a family member destroy their family through a divorce or alcoholism? Where is the blessing in watching as my husband and other family members slowly deteriorate before my eyes?  Where is the blessing in saying goodbye to a friend that was taken from us way to soon? I don't see it.

Enter Laura Story's song "Blessings" to remind us of the answers to these questions. 

Laura Story wrote this song as she struggled to understand why the man she so very recently married was stricken with a brain tumor. It was a long and painful road of surgeries, near death and a man that forgot he was married to her at times.  She prayed for healing daily and for understanding why this was happening.  It inspired her to write a song that has become a huge blessing to me and countless others. The chorus of the song speaks volumes about why we often have to face certain things...

What if Your blessings came through raindrops?

What if Your healing comes through tears?

What if a thousand sleepless nights are what it takes to know Your near?

What if the trials of this life are Your mercies in disguise?

God even wrote an entire book in the Bible about this very thing.  Job was an upright man of God.  He lead a life faithful to the Lord.  Yet, he had it all taken away from him. And he cried, and he questioned God.  In the end, he realized that God used this to bring Job closer to Him and allow Job to see even more clearly amidst the tears.

What if the trials of this life, the rain, the storms, the hardest nights are your mercies in disguise?

Simple words that speak volumes. And a powerful reminder that sometimes God will use something that does brings us discomfort of pain to draw us closer to Him and reminds us of his unending love and the strength that we can find in His arms.

I know the road ahead of us will often be filled with pain and turmoil.  I know that at times I will lose sleep and cry out in anger.  But, I also know that God is with me and will walk alongside me as Robert continues to battle this disease that neither one of chose for him.  However, God has started us on this journey for reasons we may not yet see or understand.  But, He knows what it is and He will use this for His ultimate purpose of our lives.

Here is a link to a video from YouTube of this song.  I pray it blesses you as much as it has blessed me. 

Laura Story's Blessings

Is a Lawyer The Way to Go?

We have received the second denal letter from Social Security telling us that they have denied Bill's request for benefits.  Something about not showing signs of the disease.  Must be the whole misunderstanding that the Social Security Administration has about the disease, but that was another blog...
So, we have filed an appeal yet again.  This time, it is the request for a hearing.  Basically, the case goes before a judge and he will decide Bill's fate. When the hearing will take place is anyone's guess. Current backlog is averaging about 364 days, according the Social Security Administration website.  I sure hope it does not take that long.
The decision we have been wrestling with in this appeals process is if we should get a lawyer for him to appear at the hearing. SSA even provides a list of lawyers to contact if interested. And they are free of charge if you don't win a settlement.  Sounds like a good deal.  A lawyer will take the lesser of 25% or $6000 of the back pay that is awarded to the person. Back pay is usually the amount the claimant will receive each month back dated to when first filed or another date the judge decides on.  Sometimes, the judge will decide no back pay.  It is the judges opinion of when the conditions really set it that make the person disabled and unable to work.
Using the premise that Bill will get back pay from the date the first request was filed - approximately one year ago - and the estimated monthly amount we have been told he will receive of $640, the lawyer could get roughly $2000 if the claim was approved today. Then, when you factor in that the average processing time from when a hearing is requested to when the hearing takes place is approximately a year, you can pretty much double that amount.  For a person that will have to set up some sort of living arrangements and buy many of the basics that a person needs, losing that amount will not be easy for deal with. 
On the flip side, if he does not win the case, then the lawyer gets nothing. Basically, he takes the case for free. So, it does seem like a good idea, right? If we lose, we lose nothing. We have nothing less than what we started with. Plus, most lawyers will not take the case unless they are confident the judgement will be favorable for the claimant.  They aren't going to take a case that will not get them a payout of some kind.  They want to make money just like everyone else. And a lawyer will take care of making sure all the paper work is filed, all medical information is received and anything else that comes up.
So, maybe hiring a lawyer is a good idea.  It will make things a lot easier and give us an advocate that wants to win for us but also understand the laws and knows if we really have a case or not. Granted, it will cost if the settlement is won, but isn't it better to get something than nothing at all? And the consultation is free, so if the lawyer doesn't think you have a case, then he doesn't take your case on. 
Now, how to pick the lawyer... 
Actually, that part is pretty easy.  In the paperwork that is sent confirming the request for a hearing, the Social Security Administration provides you with a number to contact someone.  You are then directed to attorneys in your area.  So, we have contacted an attorney.  Now, we wait and see what he thinks and how long it takes to get the next phase of this lengthy process started.

Where Were You 10 Years Ago?

It is the question that so many people ask about significant events that happen during a lifetime. For one generation, it was where were you when Pearl Harbor was bombed. For another, where were you when you first heard about the Kennedy assassination.  So, where were you when you first heard about the terrorist attacks that happened ten years ago today?  I can remember it so clearly. Just like it happened yesterday.

I was on my way to work at American Airlines.  My brother-in-law Eddie and I were listening to 1310 the Ticket.  I could even tell you that he owned a white F-150 at that time. We were listening as the guys described the scene they were seeing on Channel 8, of this plane sticking out of the World Trade Center. At first, for a minute, I was thinking that they were talking about the World Trade Center that is in Dallas.  It took me a minute to understand they were talking about the one in New York City. Then, just as I was getting out of the truck, they described the scene as the second plane hit the second tower.  I knew then that our world was about to change.

I walked into the office. Two of my co-workers were there and I asked if they had heard.  They knew about that first plane.  I told them what I had just heard.  One of my co-workers confirmed what I was thinking.  This was a terrorist attack. No doubt about it. A few minutes later, we were walking through the office to the cafeteria for our morning ritual of filling cups with ice and grabbing our soda or coffee.  On the way there, another friend stopped us and whispered that one of our plane had hit the first tower.

Shock doesn't begin to describe they way we all felt at that news.  Surely that wasn't possible.  But, we soon learned just how possible it was and much more was to come. We were missing a second plane.  Then, an announcement that one of our flight attendants called into the security department to say that guys with box cutters had taken over the plane and nobody knew what would happen next. Unconfirmed reports of an American Airlines plane near the Pentagon were soon confirmed of having crashed there and we all began to fear the worst. 

When it was all said and done, the world as we all knew it had changed in ways than any of us could ever fathom.

Through it all, I am grateful to the many, many men and women who sacrificed their lives to try and save the lives of others.  To all of those people that  lost a friend or family member that day, I hope you can take some peace in knowing they were doing what they loved and that they will not be forgotten for the sacrifice they made.

Huntington's Disease Awereness Day

In June of 2010, Congress designated June 25th as National Huntington's Disease Awareness Day with the goal of raising awareness and the need for further research. Huntington's Disease was first discovered by Dr. Geoge Huntington in 1872. The mutated gene that causes Huntington's Disease was discovered in 1993 and research has increased rapidly since that time. But there is still no effective treatment or cure for the disease. And research is still being done every day to help find a cure for this disease.
What is Huntington's Disease?  It is a disorder passed down through families in which certain nerve cells in the brain waste away, or degenerate.  This is caused by a genetic defect on the fourth chromosome that causes a part of DNA to repeat more than normal. In an uninfected person, the repeat occurs 10 to 35 times. A person with Huntington's Disease has this repeat anywhere from 36 to 120 times. As each generation passes it on to the next, the number of repeats grows and the number of repeats usually determine the severity of symptoms and the progression of the disease.  A low number of repeats has a slower progression.  People with a higher number of repeats usually develops symptoms earlier in life and progress at a much faster rate.  The average progression of the disease is 15 - 20 years from the onset of the beginning symptoms. The most common cause of death is the result of a complication such as an illness that the body is not strong enough to fight off.
The gene is hereditary.  There is a 50% chance that an infected parent will pass it on to a child. There is no way of knowing if that will happen or not. There are ways that you can stop the gene from being passed on such as donor egg or sperm programs, testing that can be done on an embryo allowing parents to make the decesion to keep the child or terminate a pregancy before the baby is given a chance and even the oppurtunity to chose in-vitro fertilization where test can be done prior to embryo implantation. But, through the natural process, it's a 50/50 chance. We each have our own thoughts on that.  Mine can be looked at in an earlier blog.
Finding a cure is important, but an understanding of the disease is important, too.  Not only so that families can be more informed about how it affects them but so that those outside the family affected can understand, too.  Many times, the disease can go undiagnosed if the person is not aware that they are at risk. Then, when diagnosed, the infected person can often be discriminated against because people do not understand it.  And like any other discrimination, the misunderstandings are often passed on from one generation to the next. This makes it harder to wipe away that stigma.
If you had mentioned Huntington's Disease to me eight years ago, I would have no idea what you are talking about.  If you didn't know Robert or Debbie, you probably wouldn't, either.  If Robert had not come in to my life, I wouldn't have a clue what the disease is or how it affects families generation after generation. And I will admit that if I wasn't familiar with the disease and how it affects people and had met Robert's brother Bill in passing, I would be contributing to the stigma.  He can sometimes have uncontrolled tremors, walk around with an unsteady gait and his arms will be bent at the elbows and flail around somewhat.  Eight years ago I would have dismissed him as a drunk or as a mentally ill.  Only that would not be the case.  There is something very wrong inside his body that cause him to act the way he does. That is why this day is so important.  Putting a stop to the stigmas and raising awareness of the debilitating disease are as important as finding a cure.
Understanding the disease and sharing the information with others is important so that we can increase awareness of a heartbraking ordeal that affects approximatley 30,000 people worldwide and their families. Watching one family and how this disease has changed their lives is more than enough. I want to end it so that no other family has to endure what Robert's family has. I hope I have done my small part in helping to educate others about the disease and the importance of more research that will lead to a cure.

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.

To Have or Not to Have

If you knew that by having a child, you could be handing them a death sentence, would you do it? If there was a 50/50 chance, would you be willing to take the risk? If you knew that there was a way that you could almost guarantee your child not be born with the same disease that has inflicted you, would you be willing to do something that goes against everything you believe in?
These are the question that Robert and I struggled with even before we got engaged. We wanted to have children. We like that idea of that tangible proof of our love for each other. On the other hand, we weren’t sure that we wanted to subject our children to the grief and pain that Robert faced with his mother. It was a gut wrenching decision.
One thing that I found out was if we chose to do in vitro fertilization, there was a way to minimize the risk of our child contracting HD. Prior to insemination, a test would be done on the embryos to determine if they had the HD mutation. Any embryos that were determined to have the genetic mutation would be discarded. At first, we thought that was an option, but the more we thought about it, the more we struggled with it. Deciding which embryos to keep and which ones to get rid of because they did not did not have a genetic mutation was playing God. We were taking the decision out of our Maker’s hands and that was not up to us to decide.
In the end, we decided to rely completely on God. If it was part of His plans for us to have children, then we would. If He decided that that was not what was in store for us, then that was the way it was to be. If we had a child that was born with the abnormality on her chromosome, then that is the way it was supposed to be.
We spent a year and a half trying for a child and in the end, it didn’t happen. In the course of trying, it was determined that I had some health issues that would not be easily overcome without risk to me and any child that I might have. In the end, it was taken out of our hands. That doesn’t mean that we don’t feel some moments of sadness or regret that we were not able to have a child, but we know that this life is the life that God has planned for us.
Someone else facing the choices we did may come to a different conclusion. For them, that is the choice that is the best for them. I do not judge them for the choices they make. I do understand it is not an easy choice and each couple has to make the decision that is best for them.

What is Huntington's Disease?

What exactly is Huntington's disease or HD? The shortened definition is that it is degeneration of specific brain cells that causes uncontrolled movements, loss of intellectual facilities and emotional disturbances. It also impacts the area of the brain that controls thought, perception and memory.

Long version is that HD is the result of an abnormality on the 4th chromosome that causes it to have an abnormal repeat. Over time, this build up of the abnormal repeat is what will cause the disease to overtake the body. There is no set age of when it will affect a person. It all depends on how fast the chromosome repeats itself and builds up in the body. However, most often, though, it begins during middle age. There are some people that have developed symptoms at an earlier age, but those are very limited numbers.

Huntington's disease is an inherited disease. It is passed on from an infected parent. Each child has a 50/50 chance of contracting the disease. An example of the randomness of who will be affected can be explained by using the example of my husband, Robert's family. His grandfather on his mother's side had the disease. Of the three children he had, only Robert's mother was infected. Robert's uncle and aunt did not inherit HD. Robert has 4 siblings. A sister and 3 brothers. Of the 5, his sister, one brother and Robert have tested positive. The other 2 brothers did not inherit the disease.