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 Of course, given the outdated definition of Huntington's Disease that the Social Secuirty Administration has, it really isn't that surprising.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.