Is a Lawyer The Way to Go?

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

Where Were You 10 Years Ago?

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

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

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

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

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

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

Huntington's Disease Awereness Day

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

It Was My Choice

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

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

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

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

Progress of the Huntington's Disease Parity Act

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

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

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

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