The Process

The process for applying for applying for Social Security Disability has changed a bit from when we did it for Robert's brother Bill ten years ago. 

Ten years ago, Robert and Bill had to go to the Social Security office and fill out a bunch of paperwork and take documentation to show why Bill couldn't work. 

Today, you fill out an application online. 

You have to give the names of your doctors, give medial release for Social Security to contact those doctors, provide details of any tests you have done and even list jobs you have worked at for the last few years. It's a lot.

It can also be very overwhelming and very time consuming. It is also frustrating because in multiple places, you have to repeat yourself. You have to say the reasons that you think you deserve to be approved for SSDI. 

Ww have given medical release. We have lists his doctors. We have told him when and where he got his MRIs. We have all of our documentation showing the affects HD has had on his brain. We have a letter from his last employer explaining the problems Robert had learning the new job. 

Once it is all complete, you wait.

They say it can take up to six months before you hear anything. 

The chances of being denied the first time are pretty high. If you are denied, you can appeal the decision.

There are three levels of appeal. 

The first appeal can take 3 - 4 months before a decision is reached. 

The second appeal can be 18 - 24 months to make a ruling.

The third appeal can be another 18 - 24 months. 

If you are denied then, you start all over with a new claim and wait yet again. 

When it comes to Huntington's Disease, it is not uncommon to be denied numerous times. 

We pray we only have to file the initial application and its easily approved. 

Updates will be provided as we have them. 

2020 Was an Interesting Year

 2020 was a year and what a year it was. And it isn’t even because of COVID.

It’s been ages since I have made a blog post about our lives as we live with all things HD. Honestly, there wasn’t a lot to say. Our lives were pretty normal. HD has been a part of it but it was mostly something that was hovering about but not consuming our every day lives.

A high level summary...

I changed jobs which has been a blessing in so many unexplainable ways.

We celebrated 5 amazing anniversaries together including finally crossing taking a Disney cruise for one of them off the bucket list.

We were finally able to convince Robert’s sister who also has HD to move in with there youngest brother in North Carolina.

We made new friends, we lost friends.

Robert ran a half marathon through Disneyworld.

I got to go to Disneyland for the first time.

We took several cruises and other fun trips.

We said goodbye to our puppy after 14 years...

...and acquired a new one

And then we hit 2020.

It started off pretty good. We celebrated Robert’s 50th birthday and thought things were going pretty good. However, three days after his birthday he was let go from the job he had been at for over 15 years. Short version: he was used as a scape goat for things that were beyond his control.

This would create a ripple effect and set off a chain reaction of events to bring us to the point we are at today.

First, Robert started getting depressed. He is a man who is hard wired to provide for his family by working. Not working, he got depressed even though he was collecting money from unemployment. He was able to find a new job but it revealed something we were not aware of.

Huntington’s Disease has started to affect his brain. He had a hard time remembering the steps to do many of the tasks at his new job. Even after being showed them multiple times. Plus, one day he would remember it but the next day, he wouldn’t. His cognitive ability is deteriorating. One time, he made the comment that he had to stop and think about how to eat a hamburger. He knows he has to pick it up and eat it but struggles to put the steps together to execute the process.

This all triggered a deep depression and massive anxiety for him.

It got so bad that he actually checked himself into a mental hospital for a week. He was diagnosed with a deep depressive disorder and anxiety. He was prescribed an anti depressant and given steps to combat the anxiety and recommendations to follow up with a psychiatrist.

He attempted to go back to work but was unable to. The anxiety was so bad, the depression so extreme he couldn’t perform his job.

Then, we went to his neurologist. She had an MRI done. The MRI revealed has what are referred to as dark spots in his brain. Spots where his brain cells have deteriorated and created lesions. So, obviously, his brain has been affected.

It has become clear that both his mental and cognitive abilities are both affected by HD. His ability to perform a job is affected. After nearly 35 years of working, he no longer can. This brought us to the decision that it is time to apply for disability.

So, we have started that process. We submitted his application on Friday. Now, we are at the mercy of the SSDI to see what happens next. Our prayer is that it is an easy process for us and not the long drawn out one that we have heard the many stories off.

Here’s hoping that 2021 is a better year for all of us.