Trying to Sense Of It All

Today is one of those days that I wish I could make sense of the tragedies that take place in this world. Especially when I have two neices in Kindergarten and teach more this age on many Sunday mornings. To think that they could have lost their lives today, and that 20 other innocent children their age did in fact lose their lives for reasons that I cannot and probably never will understand is heartbreaking.

That doesn't make it any easier, though. It still breaks my heart to know that what seems senseless to me has happened and drastically changed the lives of so many families. Trying to understand it and to make sense of everything that has happened only serves to make us crazy. There are no words that can be said to diminish the pain these families are feeling. There is no explanation that we can be given that will make sense.

For whatever reason, this has happened and we have to accept it. It isn't that God allowed this to happen. God doesn't condone the killing of innocent lives. The truth is that evil exists in this world as a result of our own free will. When so many have turned their backs on God, the evil continues to grow. Blaming God for it doesn't accomplish anything, especially when we are the ones to blame for it.

Instead, all we can do is pray for for those that have been affected by this horrific situation. Pray that God's comforting arms will be wrapped around the families that are suffering, that His healing touch will be administered to those who are injured and that everyone touched by this tragedy will find peace and comfort in Him.

So, tonight, we all mourn for these families and lift them up in our prayers. May they all find comfort in God's unfailing love. His arms are open wide and ready to embrace each and every one of them. And we can also take comfort in knowing that these children are in His arms tonight and no longer suffering.

Is this because of HD?

The Sunday morning before Thanksgiving, when Robert got out of bed, he immediately fell back on the bed. It took two or three more tries before he was able to stand up, but even then he was having a problem. The problem? He was extremely dizzy to the point that he couldn't stand up. Since this was a new experience, it worried us. Especially when he began to complain of these dizzy spells at all sorts of different times and when doing all various activities. It was always worst when he would get up first thing in the morning, though. And it continued to plague him daily.

Why is this happening? Is this a symptom of HD that we are not aware of? What is going on here? All of these thoughts are going through our heads as we wondering what this is all about. We were worried that he was beginning to experience a symptom of the disease that was uncommon and one that would have a major impact on his day to day life. I couldn't really find anything on any of my favorite HD websites that gave me any insight into whether or not it was some lesser known symptom or something. It was a bit nerve-racking for us.

Robert, being Robert, didn't want to go to the doctor. He kept saying that he would get over it. He hates doctors so he fights going to them unless he absolutely has to. So, I made an appointment for him that Wednesday and told him to go. Turns out he has vertigo.

Vertigo is a condition caused when tiny crystals that normal reside in your ear canal come loose so to speak and float around in your ear canal. This throws of your equilibrium and causes you to get dizzy, especially when you move your head certain ways - such as getting out of bed in the morning. There are any number of causes for it and it is hard to say what precipitated the condition in Robert.

The good news it is treatable in the majority of cases with some medication. So, Robert has been taking the medication and taking time to get out of bed in the morning, or attempting to sleep sitting up some nights when it is really bad to help the crystals return to their normal position so that the dizziness will go away. And he has noticed a lot of improvement.

Turns out that about 1% of people with HD have experienced symptoms of vertigo. Not enough to really make a connection as it being a real symptom of the disease. It is more of a random thing. But this experience does highlight the constant sub-conscience fear like state that a lot of people affected by HD live with. Every time something happens clearly out of the norm, like sudden onset dizziness, you worry that it is HD. Then, you put of seeking medical treatment for fear that you are right and the doctor will say it is HD and nothing can stop it. Because, once the more serious symptoms start, that is the beginning of the end. But as we learned this time, the vertigo is 99% likely to be unrelated to Robert's HD and is treatable.

We know that one day we will go to the doctor and be told that it has started in Robert. That he has reached that magical age for his body and the disease has begun to take him away from us. And we live each day knowing that it is one day closer. And we worry that some random thing may be that first symptom. But, we also have to remember that the random thing may not be HD at all. So, even though we may not want to hear what the doctor has to say, we need to go and hear it from him. Because, as it turns out this time, it could be something else entirely that is serous but not related to his HD at all.

Making Memories to Last

For those of you that know Robert and I, you know that we tend to do a lot of traveling. We like to take trips to visit family and enjoy time alone as well. In fact, I don't think we have taken one vacation since we have been married that did not involve going some where, even if it was only for a few days. A lot of people don't understand why we always go somewhere and spend money to do this when we could save it and just relax at home.

It's quite simple really. It has to do with a website that I once came across that gave advise for the caregivers of those diagnosed with HD. This website recommended that you should make memories with the infected person while you still can and document them with pictures. Then, make a scrapbook of some of the best parts of those memories so that later in life, they can be looked back on and even if the HD person cannot necessarily say it clearly, with the help of the scrapbook, he can share that he is thinking about that time and the fun that was had. I always thought that was a great idea. Plus, that gives you both something to look back on fondly and remember even when things are at their worst.

 I took that to heart. I know that there will be a time in the not so distant future that we will no longer be able to travel like we do today. Reality is that there will come a time that Robert will no longer be able to travel anywhere and we will be forced to stay home instead of traveling together like we do today. Today is all we have to make the memories that will sustain us for the rest of lives. Today is our oppourtunity to enjoy time with family and friends and make the memories that we will look back on later fondly.

So, that is why we do it. Maybe it isn't always the best idea to go somewhere and maybe we should save some of that money for that day that Robert can no longer work or put it back into some repairs that need to be done around the house. Those are great ideas. Robert and I have talked about it many times but we always come back to the same question. Which memory would you rather look back on it 10 years? The time and money you spent on a cruise for your anniversary when you could have used it to replace the carpet in your bedroom or that you put carpet in the bedroom when you could have taken a cruise for your anniversary? What if you knew that there would come a time where you would be replacing the carpet instead of taking a vacation simply because your spouse is no longer able to travel? Would that make a different?

 We all have our own answers to these questions and none of them are right or wrong. The point is that we all need to spend a little some time making the memories that will last and mean the most to us. Robert and I will continue to work to make the memories that will last us a lifetime knowing that one day, we will opt to replace the carpet in the bedroom simply because it will be too burdensome for Robert to travel anywhere. We will collect memories and document them today so that we will have something to enjoy tomorrow.

Her love lives on

 

It has been two years since Cheryl left us and became free from a life ravaged by Huntington's Disease. She went on to heaven where she got to dance and sing with Elvis every day. I know she is having the time of her life - free from the awful affects of the disease and from the pain and suffering she had to face throughout her years.  We miss her greatly still but know that she is much happier. Especially since she was joined by her mother earlier this year. The two of them are probably fighting over the Dallas Cowboys and Cleveland Browns or the Texas Rangers and Cleveland Indians. Cheryl was a diehard Cowboys and Rangers fan - which she passed on to her kids and Margaret loved any team from the Cleveland area. There was always a lot of trash talk anytime the teams were playing. It was fun to watch and I am sure that hasn't changed a bit.

At her funeral, the pastor said something that still sticks me two years later -  It's not about what the number of years that you were given but what you did with the years that you were given.  In the case of Cheryl, she may not have been given as many years as some others, but she still managed to do a lot with the short amount of time that she was given on this earth. As a result, many people have been touched and are better as result of the life that Cheryl led. She loved with all of her heart and passed that love on to anybody she came in to contact with. Not many people could walk away from her without feeling the love she had for life and those around her.

While I did not have the oppourtunity to spend a lot of time with Cheryl as the disease had already began to rob her body when I first met her. Still, I feel blessed to have the opportunity to have known her even for a little while. The life that she led still lives on in the lives of each on of her children. They are a living testament to the life that she led and passed on to others. She continues to live on in the life of others - living proof that she did a lot with the years that she was given on this earth.

While each one of still misses her, we know she is better off because she is not longer struggling with the effects that HD has had on her body. She is better off today and we can take comfort in that fact even though we still miss her smiling face in our lives.

Cheryl, we love you and will continue to show the love you showed us to the world around us.

And So it continues...

We are so frustrated right now!!!!

The minimal amount that Bill is receiving from Social Security each month is not enough to pay for an assisted living place. Not to mention that it will not pay for an apartment and allow him to eat each day, too. 

So, it was recommended that we try for Medicaid because that will cover the additional costs for an assisted living place. Sounds easy enough. But guess what! There is more than one type of Medicaid. He is covered under the first type that helps to cover additional medical expenses but not the second type that helps to pay for an assisted living facility.  Based on the initial assessment done over the phone, Bill doesn't qualify for this type of Medicaid. The bright spot is that they have agreed to send someone out to personally assess him and see if they feel he might really qualify.

So, an interview has been set up. But how are these people going to come out and assess him in about an hour? It isn't that he needs constant monitoring but he does need some coaching to do things like shower and brush his teeth each day as well as some assistance in eating something more than a tv dinner from the microwave. I mean, he burns his frozen waffles when he puts the in  the toaster more often than not and he has burned his eggs and bacon on more than one occasion. So eating is something that he needs help with and Robert and I cannot be here all day to make sure that he is eating well and not burning the house down while he trys to make it. But, nobody can make this determination by spending a few minutes with him. It takes a day or longer to really see and understand what all of his issues are. 

We have already gone through this whole thing with Social Security where they have determined that because of his physical as well as cognitive issues, he cannot keep a job. So, why is it so hard to determine that he needs the assistance as well? A big part of the reason that he is still with us is because he cannot live on his own by himself. He needs somebody around that can check on him each day and make sure that he is okay. And be reminded to change his clothes each day. But it is stressful for Robert to have him with us day after day. Especially when he follows Robert around like a lost puppy and doesn't seem to like it if Robert wants to spend time with me and not him. And Robert doesn't need the additional stress in his life. Robert has the same disease as Bill and the stress can make it worse. So, he needs to go. But finding that place is getting more and more frustrating each and every day.

I expected a long and drawn out process when we started all of this, but we are nearing the two year mark since we began this whole process. To me, that seems a bit excessive. And gets more and more frustrating by the day since we cannot seem to find the solution to this problem. Because, if we are honest about, even Bill is tired of living with us and wants to be out on his own. Even though he understands that assisted living means that he will not be totally on his own, he feels he will have more independence than he does here. 

But again, we have to wait on somenone else to make a determination about Bill's condition when that person really has no understand of the disease that he has and how it affects him. If the people making the decisions about the type of care a person with HD needed, then we wouldn't have to jump through this million and one hoops to get him the support and care that he needs. Understanding the disease and how it affects those living with the disease should make the decision that much easier. So, again we are waiting and praying that another person will make the decision we want them to make - the decision that will help Bill get the care he needs.

I'm Confused

Can I just say that this whole Social Security thing is one of the most confusing things in the world?!?!?

It seems that every other day we are getting a letter in the mail about a change in some way to the original benefits that have been awarded to Bill. And each more confusing than the next. One day, we get a letter that says he is getting a certain amount of money and so much in back pay for the next year. We think great! This amount will be enough to afford a place that costs this amount and make a plan to look for something in that price range. But wait! Two days later, there is another letter saying the amount that he is going to get is actually more so we look for a little nicer place. But then a few days after that, there is another letter that says they are reducing the amount for one reason or another and now he is getting less than what they originally told us. No joke!

Then, for every letter that they send, we get two. One addressed to Robert in regards to Bill and one addressed to Bill. Considering they are sent to the same address, why not save a few trees and send only one? Plus, make up their minds and decide on the actual amount they will be paying him and send only one letter instead of a different one every other day.

As of right now, we cannot make plans for his future because we don't really know what his incoming money will be each month. It is very hard to make plans about where to live when you don't know what you will have to live on each month. Plus, to make matters worse, he is supposed to spend all the money in the account every month and not have more than just a few dollars left in the account at the end of it. But, on the other hand, he needs to save some money up as extra so that he will have money for all of his needs beyond the roof over his head. I mean, he does need to eat and take a shower on occasion, right?

It is getting to the point where we are almost afraid to even check the mail because we are worried we are going to get a letter saying the SSA has changed their minds again and they aren't giving him anything. After all, one of the letters they sent us said they had reduced his back pay because they show he received income up until July 2012. Unless he is walking to a job when we are not around, I don't know where that came from. The people at Social Security say it has to do with the fact that part of the money comes from disability income and some it comes from supplemental income. They both work together to pay so much each month and the share of each seems to change frequently. Bill gets very confused by all of it. We get confused by it, too. Robert has made several calls to the social security office for explanations. Some days, he hangs up and understands it all, but he may be confused by what he hears the next day. If it wasn't for Robert being here to help, I am not sure Bill would really know or understand what is going on. If we are confused by it, imagine how it is for someone who is not of complete sound mind and doesn't have family to help muddle through it all.

And, that doesn't even cover the whole Medicare/Supplemental Insurance and Medicaid side of things.  We are still trying to figure that one out as well.

I guess the  bright side is that learning all of this now will be good for a few years down the road when we have to start this process for Robert. But today, I am quite confused,

Stepping our of your Comfort Zone

One thing you  learn early in marriage is the art of compromise.  Sometimes, you have to do things that you don't want to do. It might mean stepping out of your comfort zone and doing something that your spouse wants to do. But in the end, you are glad you did it. Has that happened to anyone else before?

That is the story of what we did tonight. Something Robert was not comfortable doing but did it for me and now he is glad he did. And get your minds out of the gutter!

For some time now, I have wanted to attend the local Huntington's Disease support group but Robert has not wanted to. He isn't as bad off as many of the people there so it makes him uncomfortable. I can understand that  but I still wanted to go. So I pushed him a bit to do it and he finally agreed. Of course, before we left the house tonight, he was sitting on the couch, watching a movie and hoping that I would forget about it. Sorry, honey, but that didn't happen.

So, we went. And met some people of many different ages at varying stages of the disease. We were able to share a bit of our story and also learn the stories of the others in the group. It was nice to be able to talk to others living with the disease but also to the friends and families of those who are dealing with a loved one in the midst of the disease. It is a good reminder that we are not alone. There are others that are facing all of the ups and downs that we are dealing with, too. My simple comment of we finally got his brother approved for the disease was met with the knowing smiles of people who have faced that fight themselves. It was easily understood. 

There was also a social worker who works part time for the Huntington's Disease Society of America and knows a lot of information about the disease and what avenues to pursue when looking for care for someone with the disease. She was able to make some suggestions about how to go about finding Bill the necessary care that he needs. She gave us some phone numbers and some different ideas of how to go about finding the right place and paying for it as well.  So, it was a very worthwhile expedition for us tonight.

I am glad we went. Not just because of the information we received but because of the potential friendships that we have begun to build with people that understand the varying aspects and battles that we fight. All of our friends are great when we explain about the disease and are very understanding and accepting of it all and we truly appreciate each and everyone of them. But it is nice to be able to discuss symptoms of the disease with someone and not have to provide detailed explanations of it. When I say that Bill's cognitive ability is diminishing they can all immediately relate and understand with little explanation as to how. 

For that reason, I want to encourage anybody who is struggling with something - HD, death of a loved one, cancer or whatever else it might be - to look into a support group. Having people around that are struggling like you in a situation can often help make it easier to discuss since they have been there or are there right now. It might mean stepping out of your comfort zone, but it is worth it. Just ask Robert. For as apprehensive and uncomfortable as he was about going the first time, he must want to go back since he volunteered us to bring the snacks when we meet next month. 

Why He Can't Stay With Us

Now that he has some money coming in, we are in the process of finding a place for Bill to live. Someplace other than our house. However, that is not as easy as it sounds. It needs to be a place that somebody will interact with him on a regular basis. A place nearby that allows Robert to check up on him a few times during the week. Ideally, an assisted living facility would be our first choice. This way, there is a person there that can remind him to shower on a regular basis and to put on clean clothes. If we cannot find such a place, maybe one of those weekly hotel places that offer a discount because he would be staying there for several months. That way Robert can check on him every so often to make sure he is doing okay. And these places are not easy to find in the price range that we need based on the amount of money he will be getting. I just hope we can find something fairly quickly. I am ready for him to move out of our house.

 I have had a few people ask why he can't live with us or another family member. There are many reasons for this.

Anybody that has has a family member stay with them for any length of time knows how stressful it can be. And if that family member does not get along with your spouse, it makes things even more difficult. And Bill and I do not get along very well at all. And as much as we try to get along, we seem to butt heads.  This is stressing my husband out.  Which leads me to the second reason.

This whole thing has caused Robert a lot of stress. And stress for Robert is not good. Even though he shows no outward signs of it today, Robert has HD, too. I have the results from the doctor to prove it. We all firmly believe that the stress of her divorce is what caused Debbie's symptoms to flare up almost out of nowhere. And since her stress level has decreased, her symptoms have lessened considerably. So, I am a huge advocate of reducing the stress level my husband has to deal with. As his wife, I am supposed to care for him and help him deal with whatever life throws at him. However, I can do nothing about the stress of Bill living in our house. I cannot make that go away without removing Bill from our house. So, in the best interest of my husband, I want Bill out of my home. I want to keep my husband around as long as possible and this is just one way that I can possibly add a year or two to the amount of time I have to spend with him.

Next, I didn't sign up to be Bill's caregiver and I honestly do not want to do be one for him. Now, don't get me wrong! I did sign up to be Robert's care giver and will do it when the time comes, but I do not have it in me to take care of his. Robert feels the same way. Nor do I want Robert to have to do so because of the stress I have already mentioned. Plus, I also know that it was hard on Robert to help care for his mother when he visited his brother because he knew that would be him at some point down the road. To ask him to care for his brother and knowing he will face the same outcome is not fair to him.

Plus, Bill is the type of person that refuses to listen to anybody - be it a doctor or a family member about things that will make his life easier. Medication and doctor visits are a good example of this. He doesn't think he needs to go to the doctor because there is nothing the doctor can do for him. He has also made it clear to anybody that will listen that he will not take any medication of any kind. While these two issues are not huge factors today, as time goes on, they will be. And I can't fight him and force him to do something like this against his will.  I am not strong enough to force him to do it. Nor do I have the desire to do it. And I do not want to put Robert in a position where he has to fight his brother to do these things.

Then, we cannot ask any of the other siblings to care for him. Craig already spent the last five years of Cheryl's life caring for her. He is just now being to obtain a normal life again. Not to mention that he and Bill are at odds every time they see each other for any length of time. But, even if they did get along, it wouldn't be fair to him to have to live through that whole process again.  Kevin has four kids of his own and is considering expanding his family. So, he doesn't need to be taking care of his brother, too.  Finally, Debbie is in the midst of living with the disease, too. It would be unfair to ask her to care for him for the same reasons that it is unfair to ask Robert to care for him. 

So, as you can see, it is in the best interest of everyone in the family to find an assisted living facility that would be more equipped to care for him today and into the future as well. We aren't doing it because we don't care about him but because we want is best for everyone involved, not just the one person.  At this point, we are placing it all in God's hands to help us find the right place for him and do what is best for everyone in the family.

Victory!

With the passing of Robert's grandmother taking place a couple of weeks ago, I haven't had the chance to give an update on the situation with Bill and Social Security.

To begin with, a couple of weeks ago, we got a letter detailing the judge's decision.  She agreed that Bill was unable to work and would be awarded disability income. Woohoo! Secondly, she said the date he became disabled was a date in 2004.  Basically, she said he was unable to work for nearly 7 years. So, the next question was how much he would get in the way of back pay.  For that, Bill and Robert had to meet with the Social Security office to determine the amounts he would be awarded.  This is where the whole thing got a bit frustrating.

It started when we got a letter from their office saying that Bill and Robert needed to come to their office on at 2:30 on Thursday, July 12th.  And they needed to bring any pay stubs that Bill had dating back to October of 2010 - when he first applied for Social Security.  Hello people! He filed because he can't work - how is he going to have any pay stubs for that time if he couldn't work? And, considering that Robert got this letter the Thursday before he was to meet, there was no way he could get the day off since the schedule was already written. It did say he could call to reschedule and so he figured he would do that first thing Monday morning since he would be too busy at work to call them on Friday.

Now, fast forward to Sunday.  We got the call that Robert's grandmother had passed so there was no way they could possibly make it on Thursday since that was the day of the viewing and the funeral was on Friday, in Cleveland.  So, Monday morning, Robert calls the number.  And waits on hold for over half an hour! He finally had to hang up because he needed to make some other phone calls so we could make arrangements to head off to Cleveland.  Very frustrating to say the least.  He finally got a hold of them on Tuesday morning and explained the situation - we were in Cleveland and wouldn't be able to make it on Thursday.  The lady he talked to made note of it and said it was no problem.  They could just come in whenever and it would be taken care of. The lady must have forgotten to update the appointment notes though because they blew up both Robert and I's phone during the viewing because Robert and Bill missed the appointment. It was a bit of a pain to say the least.

So, Robert and Bill finally get to the office last Monday. They were taken without an appointment which was very nice. However, I am not sure they had it all together. Robert and Bill were called to an office to meet with someone only to be told that everything wasn't ready and sent back to the waiting room to wait some more. Finally, after a couple of hours, they were called back to the office a second time where details were given - or at least some details.

First, Bill will get a check in the amount of $590 a month.  Much better than what we were originally told - around $300 a month. Secondly, he will get a second check each month - SSI.  But nobody would tell us that amount.  So how much is it?  We hope to find out next week when he get the first check on August 1st.  Third, he will also be getting back pay. And it will be in 3 lump sum payment checks.  One in the next few weeks, one 6 months later and one 6 months after that.  But they never gave the actual amount.  Only the amount of the fist check. The only thing that was really said about these checks is that the fist 2 would be direct deposit and the last one would be a paper check because it was too big to do direct deposit. However, it is hard to make plans for his future if we do not know the full amount of money he will be getting on a regular basis or if the lump sum checks will be enough to buy him things like the new clothes he needs as well as furniture for wherever he will be moving to.

The best news of the day, though, had to do with Medicare. Normally, when applying for Medicare coverage under the diagnosis of HD, a person has to wait 2 years before the coverage kicks in after being approved for Social Security disability income. However, because he had been waiting so long for approval, his Medicare Coverage actually started July 1st.  That is great because that means he can begin some of the necessary medications and treatments to help him live a more comfortable life as he progresses in his disease.

So, we got some great news! And now, we can begin the process of finding Bill a place to stay. Preferably a place that will offer assisted living for someone on a fixed income so that the can be checked on on a regular basis and be provided any extra help that he might need. The social security office did provide Robert with a place that might be able to offer assistance so that we can move forward.

In Memory of Margaret Land

Last Friday, July 13th, we had to say good-bye to a dear, sweet lady who touched more lives than any of us could count. Robert's grandmother, Margaret Louise Wagauman Land was born in 1924 and graced this world with her precensce for 88 years went home to be with the Lord on July 8, 2012.

Besides giving birth to Cheryl who in turn gave birth to my wonderful husband, she had an impact on the lives of many more. Meg as she was called by her sisters and brothers was one one of 11 kids in her family of 7 girls on 4 boys. As she was born in 1924, she grew up during the days of the Great Depression so times were tough through the years but the family survived. Her sister Peg told a story of the kindness and love Meg had for her family during these lean years. It was nearing Christmas and thier parents didn't have a lot of money to buy presents that year. Especially for 11 kids. So, Meg began buying dolls and doll clothes for her sisters to put under the tree. Peg happened to see them hidden in Meg's closet so she knew where the gifts came from. But, her sister Delores made the comment that she remembered that Christmas but never knew where they came from. And that was the way the Meg wanted it. She prefered that nobody knew where the dolls came from; she just wanted everybody to be happy and have a wonderful Christmas.

She married her husband, Peter a few weeks after her 19th birthday. They had 3 children - Jeff, Cecilia (Cibby) and Cheryl (Robert's mother). They were married for 37 years before Peter succumbed to the symptoms associated with Huntington's Diseasse. It was passed on to Cheryl and in turn Robert, Debbie and Bill. After Peter passed away, she never remarried. She never even dated again. She felt Peter was her one true love and there was no need to look for another one. She continued to live in the little house they had bought in Euclid, OH until she was in her 80's. She finally sold it about 5 years and moved in with her daughter Cibby where she remained until that Sunday a week ago.

She was a devout Catholic and went to church every week until she reached the point where she could no longer drive herself. She took her beliefs seriously and it impacted everything she did. She lived life to the fullest and enjoyed it even when she was dealt a rough hand of cards - which included losing a husband and a daughter to Huntington's disease. She was a ball of fire, and loved her family above all else. She was about 4 foot 11 or and loved to let anyone know how she felt about any number of issues from how biased FOX News was to her views on divorce and second marriages and any other issue that you might want to discuss. Sharing her opinion was never something she would sh away from. In fact, her and I went around a few times about our differences on a lot of different topics.

Her family was the most important to her up until the end. It was obvious in her commimentment to care for her daughter even when it became difficult to do so. It was even obvious up until the final days of her life. In fact, she told her niece, Terry, just a few days before she died that she couldn't go because she didn't want to leave Cibby alone. She kept saying that she needed to be there for Cibby. It was only after much convincing from Jeff and Terry they would care for Cibby that she decided it was okay to join Cheryl in heaven.

Margaret Louise Waugaman Land was very special lady and she will be missed by many but we all carry her in our hearts wherever we go. She touched many lives and we are all better for having known her.

We love you and look foward to seeing you again in heaven.

Understanding The Side Effects

Something that Robert and I are learning the last few weeks is that it is important to be aware not only of the symptoms ann how they compare in relation to whatever the ilness might be, but also to the side effects of the medications that are being prescribed to you. We already know that the leg movement in Robert is most likely restless leg syndrome. Like the doctor said, without the blood test, he isn't going to give an "official" diagnosis but he was willing to bet his life on it. Especially since the symptoms match up with RLS and not HD. The medication that he was taking did nothing for RLS and never will. The doctor suggested that Robert go back to his original doctor and request a change in medication. Mainly because this one has some unpleasant side effects and can be highly addictive if used for the wrong purposes. Since Robert was only taking one a night to help him sleep, he was fortunate enough not to develop an addiction to it. But after some research, we began to realize that he is experiencing some of the unwanted side effects and it is having a major impact on his life. Depressed thoughts, angry outbursts, more vivid hallucenic type dreams and even memory loss are just a few of the side effects that are experienced by people taking this particular medication. For the last year and a half that Robert has been taking this medicine, he has been dealing with each one of these side effects in spades. At first blush, we assumed that it is just a result of the HD begining to set in, so we didn't put much thought into it. The symptoms are what they are and there is nothing we can do about it. But, for the most part, HD is a gradual thing. It shouldn't cause the type of changes in a person that Robert has been dealing with almost out of no where. And, they have only begun to this extreme since he began taking this medication. I am not saying he was never angry, a bit down or that he ever forgot anythng. That is normal, but it seems to have increased drastically since he started the medicine that is supposed to help him. So, Robert has decided to stop this medication. In just a few days, he has noticed an improvement in his mood and his tempoer. It seems like this medication must have been affecting him in some way after all. Which is why it is important to really read up on any new medications that you are given by the doctor and understand what the potential side effects are. Does the benefit outwiegh the side effects? Is it really the best possible treatment or is there something else that can be used to help with the current problem? We put a lot of faith in the doctor to know what is best for us, but they don't always give us all the facts. Unless we ask, the full range of side effects are not always shared. And when you are given a medication after the wrong diagnosis, there can be even more negative repercussions. For me, this is a lesson learned and I will be much more cognizant of what types of medication both Robert and I are being prescribed. As time goes on, I will have to be the advocate for all of Robert's care and I would hate for him to have haullicinations and be unable to explain it to me. If I was seeing crazy stuff and couldn't articualate it to someone, I would probably go crazy. So, pay attention to the medications that you and your family have been given by the doctor. Weigh the good and the bad carefully and decide if it is worth the side effects that might be caused. For us, at this moment in time, this medicine is worse for Robert and the negatives outweigh the benefits - especially when it was prescribed for the completely wrong reason.

Incomplete Diaganosis

A few weeks ago, I was doing some searching on the Internet looking for new information and treatments out there for HD. This is something that I do on a regular basis. I figure the more I know and can learn, the more knowledgeable I will be in helping Robert as he progresses in his disease. I came across some information that I had read before but had pushed to the back of my mind. When a person begins experience the chorea (movement) symptoms, they are hard to miss if you are around the person. However, the movements usually diminish when a person is laying down or sleeping. I know that Robert's mother always seemed to have less movement when she was sleeping. Of course, as the disease advances, the movement will not stop just become less noticeable when the person is sleeping.
So, this got me thinking about Robert. He has "twitches" in his legs at night or if he sits for long periods of time. He can control it for a few minutes each time, but then it reaches a point where he has to move his leg. He cannot contain the feeling anymore. But, it is mainly when he sleeps and after sitting for a lengthy period. When he lays down at night, the twitching kicks in. Not every single night, but every so often. And, it disrupts my sleep so he has to go sleep in another room. He hates it if I get up and leave in the middle of the night, so he insists that I wake him up and make him leave. But, if the movement associated with HD tends to relax at night, then why is it just the opposite for him? His movements act up more, not less. Probably even more so on the days that he doesn't do a lot of standing or walking. I am no expert but to me, it seems like it may be something else that is causing his leg movement. Like maybe restless leg movement? My research on the symptoms of restless leg movement describes his symptoms to a t.
Now I am concerned. He has Huntington's Disease. We know this for a fact and are well versed in the many different symptoms that are associated with the disease. Between witnessing it progress in the various family members to the hours upon hours of research that I have been doing, we know quite a bit of stuff. But, we also trust the doctors to know stuff about the disease, too. I know that this first neurologist that he went to did say from the outset that she is not "familiar" with HD and Robert would need to see a more specialized neurologist. However, this is the same doctor that his sister Debbie uses and she was not advised to seek a different doctor. So, does she know enough about this disease to really accurately treat a person?

All that aside, my fear is that some symptoms that Robert is experiencing and others that might develop over time might get lumped into being HD when they really are not part of HD but symptoms of something else. Maybe because the doctor does not know enough about the disease or because she doesn't want to take the time to do more tests to find another issue. Is it possible that he might have something else wrong with him, too? Something that nobody has taken the time to find out because they are just putting it all under the HD umbrella?

Almost 10 years ago, we lost my grandmother to Pancreatic cancer. She was 90 years old. She often complained of the pain in her side where her pancreas was located. Most of the time, it was dismissed as the fact that she was nearly 90 years old.Both by doctors and herself. It was not until a few weeks after her 90th birthday that some blood work was done by a new doctor that it was discovered. By this time, it had spread throughout her body and there was little that could be done for her. She died only 3 months after her 90th birthday. Could more have been done for her if someone had listened to her a couple years earlier when it first begin to appear in her body? Nobody knows for sure. And we will never know because it was dismissed without further testing because she was almost 90.

Then, there is me. I have had arthritic like symptoms in certain parts of my body for several years. But nobody took me seriously. I am too young to have arthritis yet. Or at least that is the reaction I got until I insisted on some kind of testing being done to check. And even then, the doctor was skeptical they would find anything. Instead, I learn that I have a rare form or arthritis that usually begins showing symptoms in a person in their early 20's! Also, because I have apparently had it for awhile and did not receive proper treatment for it, I am at risk for the more severe complications such as having to have a hip replaced.

So, I know there are many times where a person's symptom gets dismissed because of one reason or another. And since so little is really known about Huntington's disease, it increases my concerns that Robert may have something else wrong with him - like Restless Leg Syndrome - and nobody will take the time to find out. And, as the disease progresses, and I have to be an advocate for his care, I want to be able to go to a doctor and say that he is experiencing this or that and the doctor to know whether it is or is not a symptom of the disease. I also hope to encourage each person and their loved ones, too. It is important to receive proper treatment for whatever it is that you are facing. But first, you have to know fully what it is and not have it dismissed as part of something else that it is not really apart of.

Now, back to Robert and his leg twitches. We actually met with a neurologist today. This guy asked many questions about Robert's leg movements. He spent a good ten minutes on this topic - and made a diagnosis that had nothing to do with Huntington's disease. Instead, he has Restless Leg Syndrome. But, that isn't all. The medication that the other doctor prescribed for him doesn't treat RLS and can be highly addictive. So, he is going to recommend a change in medication to treat the actual problem that was misdiagnosed. So, one doctor just lumped him into HD when that really wasn't even what it was. Which takes me back to the beginning.

He was lumped into the HD diagnosis when his symptoms weren't really part of it. Because one doctor was not knowledgeable enough about the disease, she just assumed it was something that it wasn't. And since it took a year to get in with this new neurologist, he has been taking a medication that really isn't good for his actual condition. I guess I will continue to do more and more research so that I know what is part of the disease and what is something else entirely. That way I can request further testing if I notice something that doesn't fit under the HD umbrella.

A Day in Court

Bill had his day in court today and only spent about 10 minutes in front of the judge!
Of course, we don't know the answer yet - that takes another 30 days but the lawyer thinks the judge will rule in Bill's favor.
As a refresher, I am referring to the long drawn out process began over a year ago to seek Social Security Disability and has been detailed in previous blogs. HD has robbed his ability to hold down a job and he needs income to support himself. And what a long process it has been.We knew it might be difficult. We had read the stories of denial after denial by many, but also saw how easily the approved coverage for Debbie, so it didn't seem like it would be that hard. We really had no earthly idea it would still be ongoing over a year later. However, today could be considered some real progress.

Today, Bill had an appearance before the judge. We found a lawyer recommended by the Social Security office and he was there with Bill and Robert. I have to commend the guy. He did a lot of research and took time to familiarize himself with the disease so he knew what to expect. Of course, he only gets paid if there is an award to Bill so the effort would work in his favor. He prepared a lengthy brief that defined the disease and talked about the issues Bill was facing. He even included copies of both Robert and Debbie's test records showing the heredity pattern. The court has a vocational expert they use to aide in the decision that was with them via speakerphone. This person makes a statement based on asking a few questions of the person seeking coverage and the paperwork that has been provided to him. This expert basically said that Bill could not work for more than 10 minutes at a time and could not function in a normal work environment. The judge seemed to agree and accept this guy's statement and said she would review the information. They spent 10 minutes in front of the judge! Seriously!!!
Now, the judge will review the situation and issue a ruling. This process usually takes 30 days. And then it will take a week or two before Bill sees the money or we move back to the starting line. The lawyer thinks she will rule in Bill's favor because she seemed to agree with the vocational expert. We shall soon see. Of course, there is no guarantee and now we must wait a bit longer, but the chances of an approval seemed to have improved considerably. I feel for the many others that have had to wait for so long and still have not been approved. I hope it all works out in Bill's favor.
I just can't quite believe that we have had to wait for all this time since the process started and the judge is making a decision about Bill's future based on a 10 minute conversation.

What is Huntington's Disease?

Encyclopedia Britannica defines Huntington's Disease as  relatively rare, and invariably fatal, hereditary neurological disease that is characterized by irregular and involuntary movements of the muscles and progressive loss of cognitive ability (Encyclopedia Britannica). While that is all true information, it only mentions a small portion of the story of HD. Huntington's Disease affects more than just muscle movement within the body and the muscle movement may not be the first noticeable sign of the disease. For some, it might be the inability to control emotions that are affected first or the brain's ability to process thoughts in the correct and logical order. I do give credit to Encyclopedia Britannica for helping to shed light on the disease, but their 400 words do not tell the whole picture or details of the disease.

However, the definition of Huntington's Disease as portrayed in Encyclopedia Britannica is outdated.  In the beginning, when little was understood about the disease, this definition was thought to be accurate.  However, HD was first discovered in 1872.  That is 140 years ago!  Like all other diseases and illness, a lot more has been discovered since then. There is a better understanding of how the disease affects the brain, how long the disease takes to progress through the body and even medications that can help reduce the severity of the uncontrollable muscle movement and many vitamins and supplements that have been shown to slow the progression of memory loss. A way that I have begun to explain it as far as symptoms of the disease is to take Parkinson's and Alzheimer's and put them together. Since more people are familiar with these two diseases, it makes Huntington's a little more understandable, too.  And that is what it really is.  A lot of the symptoms from Parkinson's and Alzheimer's together in on body.

It is more than just a movement disorder. It is a process where the brain slowly begins to deteriorate until the body cannot do much more than involuntary functions such as breathing. And "jerk" uncontrollably because of lose of muscle function and coordination.  And the first signs of the disease may not be the uncontrollable movements of a person. I have read stories where a person begins exhibiting symptoms similar to dyslexia or the inability to remember simple every day things that they have done numerous times before.  And this is long before the person shows any signs of lack of coordination or uncontrollable muscle movement. I have also seen instances where HD tends to affect the emotional parts of the brain.  It might cause a person to be prone violent outbursts - verbal or physical - or unexpected crying episodes that appear out of nowhere. Two people with the disease in the same family can show totally different symptoms in the beginning.  Of course, in the end, each person will develop loss of all cognitive ability.  It is inevitable.

The disease is caused by an abnormality on the 4th chromosome that causes there to be more repetitions of the codes on these chromosome than their normally is. There is no known cause for this repeat and currently no way to stop it from happening.  Studies do show the higher the number of abnormal repeats, the earlier a person will develop the symptoms of Huntington's Disease. There is also some indications that each generation shows an increase in the number of repeats so each generation has a chance of exhibiting symptoms earlier in life (More on HD Chromosome). Although not documented, we personally have learned that high stress levels can also cause the symptoms to become more pronounced. However, once the stress level is reduced, the symptoms can begin to taper off as well.  Or at least that was our observations while Debbie was dealing with the stress of her divorce. In the last couple of years, the symptoms are not quite as severe as they were four or five years ago when her stress level was extremely elevated. 

Each day, more and more is being learned about this terrible disease and the affect that it has on so many families.  But, it is still a relative unknown.  I, myself, have said more than once that I had no knowledge of the disease until I met Robert.  And, yes, I have heard it mentioned on some TV shows, but I probably wouldn't have cared too much if I didn't know Robert and the rest of his family.  However, now, I do know and want others to know.  Not just friends of Robert and Debbie and Chrissy, but others, too.  I have actually personally come into contact with other people that I work with that have a family member struggling with this disease. It is estimated that roughly 30,000 people in the world have HD. Granted, that is not as many people that have things such as Parkinson's or Alzheimer's, but it is still a lot of people. 

And that is just the number of people that have been diagnosed with the disease. That doesn't include the family members and friends that are indirectly affected by it as a result.  For example, Robert's mother had a brother and sister that do not have the disease, but they had to watch their father and sister both struggle with it.  Plus, their mother had to take care of a husband and a daughter that was diagnosed with the disease.  And Robert's brother - who does not have the disease - spent five years caring for his mother when his grandmother and aunt could no longer do it themselves. Plus, all five of Cheryl's kids had to watch their mother deteriorate before their eyes and have her taken from them much to soon. They also witnessed in their teens and early twenties what the disease did to their grandfather and then learn and live with the diagnose of their own mother.  And the fear they might have the disease.  And the emotional roller coaster until test results showed if they did have it or not.  Not to mention the wide range of emotions each of them has to live with after learning those results.  It is very emotional for each and every one of them, regardless of whether they received positive results or not. Positive results mean you dodged a bullet but your brothers or sister did not. Plus, Debbie carries the worry of whether she passed it on to her children or not. Since she did not know she was living with the disease until after her children where born, nobody knows if they carry it or not.  Testing is not done on minors so the boys cannot learn of their own prognosis until they are 18. 

Many people are affected by the disease on a daily basis.  And others come into contact with a person that is struggling with this disease each and every day.  You may not even know that the person at the table next to you has begun to experience this disease.  The uncontrollable tremors, the slurred speech, the difficulty swallowing harder foods such as chips and peanuts are all signs of Huntington's disease. That is one of the many reasons that people struggling to manage the disease are often thought to be drunk or under the influence of some other type of drug.  In reality, that may not be the case at all. 

We all have or own issues to deal with. There is no discounting that fact.  I don't share this information to get sympathy for Robert, Bill, Debbie, Chrissy or Cheryl but to help raise awareness of something that so little is known about.  I believe knowledge is power and the more we all know, the more we can all raise awareness and help in the race to find a cure for a disease that does not play favorites and can destroy a family generation after generation after generation.

Understanding the Turmoil Inside

I have said it before.  Huntington's Disease affect each individual on a different level. It can cause impulsive actions, paranoia or even OCD tendencies that cannot be controlled. To live with the person that has the disease, you have to have an understanding of this fact.  That doesn't mean that you always have to like it and that you won't get frustrated from time to time with their actions or reactions to a situation.  That is human nature.  What it does mean is that you will have to develop an understanding of the person and know what their limits and boundaries are so that you do not intentionally push those buttons. 

I will share a story of what recently transpired between Robert and his brother, Bill.  I found it kind of funny but Robert and Bill didn't quite see it that way.  See, Robert was helping Bill clean up his room and bathroom and clothing.  Robert wanted to put bleach in the load of all white clothing that he was about to wash of Bill's.  Bill didn't like that. He kept saying over and over "I can't take this.  I can't handle it.  Please don't do it"  He was almost in tears at the thought that Robert was going to bleach his clothes.  I am not sure what the big deal was about the bleach, but it was causing extreme panic in Bill to the point that he walked out of the house rather than watch Robert bleach this load of clothes.

Now, most of us have used bleach on clothes and know that from time to time, it needs to be done. It is a fact of life and one that I whole heartily support from time to time.  But, by the same token, I also understand that some people may feel differently about it. And for a person dealing with the demon of Huntington's Disease in their body, the idea of bleach might send them in to full blown panic mode for whatever reason.  They may not be able to fully understand or articulate the feelings themselves so it is going to be even harder for someone else to understand it. So, we have to be understanding of this turmoil that is going on inside them and recognize that certain things may cause the person to freak out.  Even over something as simple as putting some bleach in a load of clothes.

It may not always be easy.  There may be times that you react like Robert did. He felt Bill was overreacting and didn't understand it. Robert was having a natural reaction to the whole scenario and felt that Bill was freaking out over nothing. I thought the same thing as an observer of it all. I think most of us would fill that way. I wanted to tell Bill he was overreacting, too.  In fact, I told Robert that it was all a bit ridiculous. The clothes needed to be bleached.  What is the big deal?

However, after a bit, I stepped back and thought about it.  For Bill, he couldn't really say what it was.  Just that he didn't want bleach used on his clothes.  It was really freaking him out. And it might have been a reason that he couldn't fully explain or rationalize, either.  It was just the way he felt about it at that moment. And it was traumatic for him. As a person living with the affected person, we have to step back and understand the feelings this person is having.  We may not agree with them, but to this person, these feelings are real and serious.  So, we have a responsibility to the person to accept the feelings, even when we cannot fully understand them.  Pushing back and telling a person they are overreacting can only make this situation worse for them.

All I can do is pray that God gives me the strength and patience to deal with it when Robert starts freaking out because I want to bleach some of his clothes.

The Blame Game

Many, many times, I have heard Robert’s grandmother (Margaret) blame herself for the fact the HD was passed on to her daughter and her grandchildren and possibly some great grandchildren. In fact, she has said on more than one occasion that she would never have had children if she had known about the disease before she began to have children. She feels it was all her fault that Cheryl inherited Huntington’s disease and passed it on to three of her five children.
Is that fair? Should she blame herself for something that she did not know about at the time and that only affected one of her three children? I don’t think so. First and foremost, she did not know at the time. Her husband did not pass away until Robert was a teenager. That means his mom was in 30’s! Add to that, when her husband was diagnosed, the disease was still relatively an unknown. Most of what we know about the disease today has been learned since he passed. Plus, she only passed it on to one of her three children. We have established that it is an unpredictable disease.
I do not have children of my own so I cannot say exactly how I would feel if I knew that I was personally responsible for essentially killing my child by passing this disease on. However, I can say that I know it would be heartbreaking to me if I knew that I was responsible for doing something that killed or injured one of the many nieces and nephews that I have. Plus, Robert and I thought long and hard about the whole thing before we decided to have children. It was not an easy decision but it came back to faith for us.
Faith that whatever happened to any children we might have was all part of God’s plan. Faith that God would help us through whatever trial we faced as a result of passing this disease on. And, it is like Robert’s sister, Debbie, has always said – For all we know, we might be raising the next president of the United States or the person that finds the cure for this devastating disease. Of course, Robert and I did not have children so we will not have to face the same situation as Margaret did and that Debbie does.
For many years, Margaret took care of Robert’s mother because she felt it was her responsibility since it was her daughter. Now, keep in mind that Margaret isn’t even five foot tall and probably weighs 75 pounds soaking wet and Cheryl was about 5 foot 8. So, when Cheryl could no longer dress or bathe herself or use the restroom, it was very hard for Margaret to help her. Still, she did not want to relinquish care of Cheryl to anybody else. Since she was the one that had a child with somebody who could pass on HD, it was her responsibility to care for that child. That is how Margaret saw it. It took a lot of talking from Robert’s brother Craig to convince Margaret to relinquish care of Cheryl. And once Cheryl was no longer there, Margaret’s health began to very rapidly deteriorate. And since Cheryl’s death, it has become even more severe. I think blame plays a huge part in all of that.
I have told her a few different times that she should not blame herself for what happened. Besides the fact that she did not know it, there are other reasons, too. She would have missed out on the many years of happiness that she had with Cheryl while she as alive. Plus, if she elected not to have children, then her remaining son and daughter who do not have the disease would not be around to care for her now. She would have to be in a nursing home all alone because there would be nobody around to help her. Plus, she would have been denied the privilege of knowing the her grandchildren and great grandchildren. While Jeff did have two boys, Cibby never had children. And Jeff’s two boys don’t have any grandchildren. Cheryl, on the other hand, had five children who in turn have had children of their own. So, she has witnessed yet another generation continuing on through Cheryl. Plus, if she had never had children, I would never have met Robert. And I cannot imagine my life without him in it. I am definitely glad that she did have Cheryl.
The disease being passed to Cheryl and then to Robert, Debbie and Bill was all part of the plan that God devised long before any of them were born. We may not know why it is that this all happened, but we have to believe that God knows what he is doing and it has all played out this way for a very specific reason. Blaming ourselves for any part that we may have played does not take away the hand that we have been dealt in life. Instead, it just makes us feel that much more miserable. Instead, what we can do is accept life for what it is and enjoy the moments that we have been given together because they can all be taken away in an instant – whether it is because of HD or a car accident on the way to work.

And the battle goes on

I have read the stories of others with HD who are fighting for approval for disability coverage from the Social Security Administration. It is not an easy process at all. Many are denied time and again and some do not even get approval before the die as a result of complications from the disease. So, I don't know why I was surprised that we are still fighting through the process two years later. I guess because it didn't seem to take Debbie any time at all to obtain coverage. Hopefully, that would be the case with Bill. Boy was I ever wrong. The first time we requested benefits for Bill was early to mid 2010. Yes, 2010. Roughly two years ago! And we are still fighiting. The first request was deneid because he didn't exhibit "symptoms" of the disease. Same reasoning behind the second denial. Of course, given the outdated definition of Huntington's Disease that the Social Secuirty Administration has, it really isn't that surprising. But that is a blog from another day, and one to follow up on in the future. He may not exhibit the jittery uncontrollable movement (or chorea), but he has decreased mental functioning that would be needed for him to hold down a full time job. Reality is that he is unable to work. He needs assistance from Social Security to be able to live and get medications that will help lessen the symptoms and prolong his life. Suddenly, I understand what it is like for all of these people that I have read about. This whole process is emotionally and mentally draining and very frustrating. Especailly when all of us familiar with the disease know what the disease is doing to his body. Hopefully, that will soon change because we have been given a court date for our third chance at getting approval. On Wednesday, June 28th at approximately 1:30 pm, we will find out if the lawyer that we have hired will earn a paycheck or not. Since he only gets paid if there is a settlement, there is a huge incntive for him to work hard on this case. And I certainly hope he does. I hope he has worked enough to earn a paycheck and gets Bill approval so that he can get on with his life and begin using some of the medications that will help him live with HD. And maybe by the time we have to begin thinking about Robert filing for disability coverage, it will be a much smoother processs.

Denial - The Good and The Bad

A blog of HD (At Risk for HD) that I follow recently published a two part blog on the cycle of denial when it comes to Huntington's Disease and all that is associated with it. In this blog, the author talks about how he began his blog under a psudeonem and wrote it for seven years before he finally revealed his name to a select group of people. But even still, he has not told anybody he works with each day or any friends and neighbors. There is a tendency to want to deny the prescence of the disease because of the stigma that is attached to it.  And even now, when he is ready to bring the information to his friends, neighbors and co-workers, his wife doesn't want him to.  For the sake of their daughter, she says.  That way she doesn't have to face the ramifications of the disease. A side note here is that they already know that she doesn't have the daughter does not have the disease because she was tested in the womb but knows her dad has the disease.
Similar to many other things that we deny, many that are at risk for the disease want to cling to the mentality of "it won't happen to me".  Robert is a perfect example of that. When they learned his mother had the disase, he decided just for the heck of it to get tested but was positive that he did not have it.  Apparently, he was writing a "book" about his life at the time and thought this would make for a good chapter.  I have never seen this book so I don't know if it really exists. But, he was sure that he did not have the disease.  Imagine his surprise when the doctor told him not only that he had the disease, but that he had high numbers which could mean he would experience the disease at an early age or that he might have a greater than 50% chance of passing it on to any offspring. Still, at first, he didn't want to beleive he has HD. Even today, there are times that he wants to deny the prescence of the disease.  Don't get me wrong, he knows he has it and freely admits it, but he refuses to believe that it will change the way he lives his life.  He doesn't want to aknowledge that one day he will end up living a life similar to that of his mother.  If he denies it, maybe it will never happen. He keeps canceling his appointments with his neuroligist and the specilist that he has been referred to. He says because the days the appointments are scheduled are not conveinent or something comes up. While in some cases, that is true, he has admitted once or twice there is a bit more to it than that. He is afraid that the doctor will tell him that something has changed or that his brain is beginning to how signs of the disease (or black spots as they are often referred to) or be told that he needs more medication or something.
Then, there is one of his brothers that has never been tested.  Of the five siblings, he is the only one that has not been tested.  Granted, he is a few years older than Robert and would most be likely showing minor symptoms by now if he did have it, so most likely he doesn't have it. And since he doesn't have any biological children, he doesn't feel the need to be tested.  Plus, he has often said that if he did find out, he would probably become a more crazy, daredevil person that didn't care whether he lived or died. Not knowing for him seems to be the better option becuase he can lead a life of ignorance and not knowing.
The author of the above mentioned blog made what I think is a very profound statement in this blog... Families that deal with [HD] naturally and up front are the ones that have the best outcome in the long run. Denial is necessary in life, but when carried to extremes, or used as the main way of dealing with life…. It becomes harmful/pernicious.
Now, in Craig's case, it is probably not denial because he does not seem to be affected by the disease.  He is not showing any symptoms when other family memebers younger than him are. We could be way off base and he might very well have the diesease and we just don't know it, but it is highly unlikely at his age. 
However, if a person has symptoms - even minor ones - of HD and a family history, they owe it to the rest of the family to find out. Consdier Robert's family. Long before his sister Debbie had. And it wasn't discussed in detail with the family. So, none of the kids really knew what the situation was. It was not until Cheryl was diagnosed with it that the kids began to get tested. Debbie had already had her children. Would she still have had her kids knowing she might pass this diesease on? Nobody can say for sure because she never had the chance to make that type of an informed decesion. And since the state of Texas will not allow somebody to be tested for the disease until they are 18, the possibility of finding out if her 3 sons have it is still a few years off. And his brother Kevin had already had of his 4 kids. Fortunately, Kevin does not have it, but he didn't know he was at risk in the beginning either.
So, when the author of this blog says that his wife doesn't think that he should "come out" about the disease to his family and friends, I have to disagree with that. While I do understand the desire to shelter thir daughter (who is 9) I think it is harmful and dangerous to her and the rest of the family. If a person denies the existence of the disease, they deny themselves the oppurtunity for possible new treatments, the love and support of family and friends as well as the chance to help educate others on this disease that is still not very well known by many that have not in some way been personally affected by it.

It is the start of new year.  When people make resolutions that they might or might not stick to. It is also a good time to think about getting some things in order such as finances or maybe preparing wills.  My goal this year is to work with my husband to create a living will for each of us so that when our time comes, we know that it will be handled the way we want it to be.

Dying is something that nobody really wants to think about, let alone talk about. While some of us are looking forward to the opportunity to meet with Jesus, it is still hard to leave our family behind.  And, if you are the one left behind to carry on without the person in your life, it is even harder to think about it.  Unfortunately, there are many times we need to think about dying. Even if we do not think it is going to happen for many years to come. God may decide that your work on earth is done tomorrow and take steps to call you home.  You just never know. That is why I think it is a good idea to take some steps to prepare yourself for that day, today.  It may still be 20 years down the road, but still...
The progression of Huntington's Disease is not pretty. It may start slow and may not seem so bad in the beginning, but as the disease does it damage on the body, it will continue to become much worse and traumatic for not only the person affected but the caregivers, too. For some, such as Robert's mother, losing the ability to swallow is a strong possibility. Cheryl had problems swallowing and often choked when eating causing many other complications. So, a feeding tube was inserted into her stomach to help her obtain the necessary nutrition she needed.  She lived for nearly four years with that feeding tube.  It was only when her uncontrollable movements caused it to be ripped out and her body could not handle the necessary surgery to replace it that the tube and IV were removed and she left us.
The question is whether you want to live or die that way.  Do you want to be kept alive by a feeding tube?  When the feeding tube was first inserted into Cheryl, the family was told to be prepared for her to last about six months or so.  She surpassed that expectation by a mile. So, a feeding tube could very well keep you alive for many years to come, if that is what you want.

What about if your heart stops in the middle of a procedure?  Do you want the doctors to take the necessary steps to resuscitate you and bring you back to life if they can? Do you want them to use paddles that send electric shocks to your heart in an effort to make it beat again?

What about life support?  Do you want to be kept alive by machines if your brain stops functioning?
What type of medical procedures do you want doctors to perform to keep you alive if you are unable to say what they are?

These are some very important questions that should be considered by anybody, not just a person that is affected with a disease such as Huntington's Disease.  That is why it is extremely important for a person to establish a living will or advance directive of how you want to live or die as the case may be.
Robert can tell me all day long that he does not want to have feeding tube inserted, he does not want to have to survive on an IV, breathing machine or any other type of medical device. He figures that if God allows one of the necessary processes such as eating to not work properly, it is his time to go.  And, he expects me to accept that and make sure no extraordinary measures are taken to keep him alive.  While I may not necessarily like it, I respect his wishes and will not allow these measures to be taken to prolong his life. However, as we learned in the case of Terri Schiavo  from several years ago, it is extremely important to have these directives detailed long before the time comes.   That way, regardless of differing opinions of parents, children and spouses, your desires and wishes for how you live and die are clearly documented so they can not be disputed. While you may have talked about it with your spouse, that does not mean that other people in your family will believe that is what you really want. 

Advance directives can involve many different things:

• A living will - a legal, written documents that details what type of medical treatment or other life-sustaining procedures you wish to have or not have. It is important to be detailed and specific about exactly what types you want done.
• Medical Power of Attorney - a document that designates the person you want to make all medical decision for you. This is useful when family members disagree with what should be done.
• DNR (Do Not Resuscitate) Order - dictates that you do not want CPR preformed if you stop breathing or your heart stops beating.
• You might even decide that you do want the doctors to attempt to resuscitate you but you do not want to live on a ventilator forever or only for a specified period of time. Or you may want CPR performed but do not want the doctor to use a device to shock your heart in hopes of keeping it beating.
• What do you want done with your organs once you die? Donate them to science or to another person?

It is also important to designate a medical power of attorney as well.  This designates the person that you wish to make any decisions regarding your care. This also has to be done while you are still competent enough to make the decisions on what you really want. It can be a spouse, a parent, another family member or a friend.  It cannot be a doctor, someone employed by the hospital or other care-giving facility.  Robert's sister, Debbie wants to make me the person that wants makes all of her medical decisions when she is unable to do so.  However, since I am not an immediate family member, unless she fills out the proper paperwork, nobody is going to listen to what I have to say.  And, even though all four of her brothers know her wishes, will they be able to respect them when push comes to shove? Robert and I have had lengthy conversations of how he wants to die. But, when it comes down to it, anybody could say that I just made it up for any number of reasons. So, documenting his wishes (or your wishes) becomes extremely important.

There are many different websites out there that can assist you in preparing all of the necessary paperwork.  Some of them are free.  Some of them are not. However, websites such as CaringInfo.org provide the forms that need to be completed and what steps need to be completed to make sure everything is valid. And as every website says, the information that they (and I) have provided for you should never take the place of real legal advice.  I am not a lawyer, but I do understand how important these steps are when it comes to making the decisions that will need to be made concerning Robert, Debbie, Bill and myself in the future.  I hope I have giving you some useful information and something to think about, too.