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However, the definition of Huntington's Disease as portrayed in Encyclopedia Britannica is outdated.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.
Monday, June 25, 2012
Thursday, June 21, 2012
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.
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.
Monday, May 7, 2012
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.
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.
Saturday, April 28, 2012
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.
Tuesday, March 27, 2012
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.
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.
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