We Have A Decision (sort of)

When you get an email from Social Security saying they have an update for you, you open it with a little trepidation. Especially when you get the email around 11:30 on a Saturday morning. 

You take a deep breath, say a prayer and pull up the website, not sure what to think

But, then you see this...

Do you see that word in bold under the blue line? That word that says APPROVE? That's right! They made the decision to approve the application.

Huge relief!

So, what's next?

In 10-15 days, we will receive a detailed letter that explains the decision. This will tell us when the payments will start and how much they will pay each month. 

The day that payment begins is determined by the day the Social Security determines disability actually began. For Robert, was this when he checked himself into the hospital (November 30th), the last day he worked (December 20th) the day we officially filed the application (January 29th), the day Social Security began reviewing the application (February 17th), the day we saw the neuropsychologist (April 16th), the day they approved the claim (June 25th), or some other random day SSA decided on? The day is important. 

Payments will begin five months from the day it is determined that disability began. It is honestly an arbitrary decision based on what the person reviewing the application decides. The letter we receive should provide that date and the amount received each month. So we wait.

Regardless, this is a huge answer to the prayers of all of the family and friends over the last few months. While we haven't reached the end of this process, we can honestly say that we now see that light at the end of the tunnel and know that we will make it though. 

More updates to follow... 

Is No News Really Good News?

An update on our application for disability benefits, such as it is. 

If it normally takes about 170 days, we should have our results around August 6th, just over two months away. Based on when they first started the application to the progression today, it looks like things are right in line with that timeline. Since they do not provide any real information, though, until the final determination has been bad, we have no real idea what is really going on. Robert and I are not the most patient of people so the waiting game is frustrating.  

At least we know that progress is being made and we have no new requests for more information. So, does that mean they don't need any more information? Does this mean the information they have provided is enough to make a favorable decision? Is not hearing anything a good or bad thing?

Nobody really knows the answer but the person who has been assigned to Robert's request. So, we continue to wait until we hear more information. There is not much else that we can do. We go about our lives as we have been since we first filed the application and continue to pray for God's favor and a ruling beneficial to us. 

The Results You Want; The Results You Don't Want

We saw another doctor. We had more testing done. The results were pretty much what we expected. It was a result we wanted; it was a result we really didn’t want.

We went to a neuropsychologist. He specializes in understanding the behavior between the brain and your behavior. He performs a bunch of tests to evaluate how your brain responds and determines  the changes in cognitive abilities. This is part of the process in applying for disability. It helps to show that a person does in fact have cognitive issues that affect their day to day life and ability to perform a job. 

The results are double edged sword. From the standpoint of applying for disability, it was good. From the standpoint of Robert’s progression in the disease, it was bad. 

The test results show his intellectual resources are in the 19th percentile or less. The words that stand out are abnormal, varying degrees of impaired, significantly comprised, uneven, deficient and below average in various categories for the 13 different tests that were performed. 

There is no doubt about it. Robert has a severe decline in his cognitive ability. Severe enough to make it obvious that learning a new task or performing a new job would be a big problem. Severe enough to show that he can no longer maintain a job that requires him to retain information and complete multiple processes needed to do the types of jobs he has done for the last 35 years or so. From the standpoint of applying for disability, this is the result we wanted. It is more evidence of his need for SSDI. 

This is also more evidence that this horrific disease has begun to effect Robert. Knowing that this disease has finally taken residence in his brain and begun to cause deterioration is not something we wanted to hear. 

Now, we send this off to Social Security to add to the file in hopes that it helps show the need for approval on the first try. In the meantime, we continue to wait.

Disappointing Research Results

In the last month, the HD commuity has received some very disappointing news regarding two studies being done on drugs that hoped to stop the effects of HD. Both of these studies have been halted in Phase III of development. 

A little high level background first. Everybody has a certain amount of the a protein in the body called the huntingtin protein. It helps do a wide variety of things in the body. When the protein is in normal. health, there are no problems.  However, if the body begins to produce a mutated form of this protein, the result is Huntington's Disease. 

In different ways, both of these studies aimed to change the makeup of the gene that causes Huntington's Disease by decreasing the amount of the harmful protein created by the body.  Each study developed antisense oligonucleotides or ASO's. These are a type of gene silencing treatment the has DNA molecules designed specifically to alter the functionality of that gene.

The first study - Wave's Precession HD-1 and 2 - was designed to target the message the body creates to produce the mutated and harmful version of the protein. The idea was to eliminate the harmful version of this protein so that it couldn't cause harm to the body. In other words, eliminate the problem child, eliminate the problem. Unfortunately, it appears there was no compelling evidence to show a change in the amount of the harmful protein when compared to those treated with the placebo. As a result, Wave announced on March 30th, they have decided to halt the study and begin work on the next treatment. 

The second study done by Roche and Ionis. This study developed an ASO aimed at silencing the entire huntingtin protein. In fact, during Phase I and II of this study, it appeared to have a lowering effect on the protein. Phases I and II are an assessment to see if there are any safety or harmful side effects and not designed to monitor the overall results the drug has on the body. It looked so promising. Then, on March 22nd, they announced they were halting the study. 

Every study has a committee of independent data experts who periodically review the data of the trial and determine if the study should continue. They usually ask two question about the data as they review it. 

Are there any new safety concerns that are emerging that did not show up during Phase I or II? 

Does this ongoing trial show unlikely beneficial results? 

In other words, if participants are showing some new strange or unfavorable side effect, the committee would order the trail be halted. If the symptoms do not appear to improve or it does not seem to show a likely benefit or improvement in a person's condition, they committee would recommend halting the trail. It appears based on the announcement from Roche, it appears that there are no safety concerns resulting in the halting of the study. We don't really know as not much information has been given. Hopefully, over the next few months, more data will be released and we might learn more. 

Looking at the bright side, both studies have provided valuable information that will be helpful as they move forward to develop and test the next drug that might be the cure. My favorite website for all things HD news related (HDBuzz) said it best. "We shake ourselves off and do it again" 

While this is a setback, I have not lost hope. I still believe the cure is out there and one day we will find it. 

Misunderstanding Social Security Disability Insurance

Some people think it is wrong of us to be going through this process of applying for disability. After all, I am still working so we should not be trying to take advantage of the system. 

The misunderstanding lies in what it is the we are actually applying for. 

What we are applying for is called Social Security Disability Insurance or SSDI. This is financial benefits based on a person's work history and funded through the FICA taxes that are taken out of your paycheck. It is the same as the money you would be collecting from when you retire and collect social security benefits. You have to work a certain number of years in order to qualify for this insurance. Since Robert has been working almost all of the last 35 years or so, he has met that requirement. 

There is another type of social security benefit that is available to those who are unable to work due to a disability. It is called Supplemental Security Income or SSI. SSI is a federally funded program providing financial help for those who have limited income and assets. The funding for this program comes from the general treasury fund and not Social Security itself. You must make less than the monthly maximum that your state government has set in order to obtain SSI. They also factor your spouses income into this. Needless to say, we do not meet the income requirements. 

There are some people I know that have opted to divorce their spouse on paper so they might qualify for the SSI benefits as well. Rest assured, Robert and I will not be doing that.

We are not trying to take advantage of "the system". Essentially, we are simply asking if we can have the money that Robert would get when he retires now instead of 20 years from now when he would reach retirement age. After all, given the way Huntington's Disease manifests it self in a person's body, Robert most likely won't be around long enough to collect all the money he has been paying in to Social Security all these years. As morbid of a thought as it might be, it is the reality we face. 

Hopefully, this helps clear up some of the misinformation out there.