The Saga of Applying for Disability Part II

 Ugh!!!

More Paperwork!!!

We got two different letters in the mail requesting more information.  Both contained a bunch of paperwork that we had to fill out and fax back to them. At least this time, we were given 15 days to complete them.

The first set was a request for extensive work history of all the jobs you have had in the last 15 years. Luckily, since Robert has only had three jobs in that time, it wasn't as bad as it could have been. They want to know what all your job functions were and why you can't do them any more. You had to detail how many hours you spent each day doing all of the various functions of your job. 

The second set was about day to day life. You have to go into detail about all of your day to day activities and how they have been affected. You have to detail things like if you can shower every day, cook food, do basic household chores and so much more. 

I was the one that filled out all of this paperwork for Robert since it is somewhat of a struggle for him. He has trouble sometimes putting his thoughts into words that make sense to you and me. His handwriting, while never great, has gotten progressively worse over the last few years.

If Robert did not have me to help him out and advocate for him, what would he do? Would there be someone out there to help him. Realistically, I know he has family that would, but what if he didn't have them around? What if he was all alone in the world? 

It makes me think of all of those that are struggling and nobody around to help.  This process is a bit overwhelming for me and I am not faced with the loss of brain function that so many who struggle with the onset of HD do. I can only begin to imagine how stressful it would be to face this all alone.

Anyway, the most recent round of paperwork has been filled out and submitted. Now, we wait again either for more paperwork that will be needed or a decision to be made. 

The Saga of Applying for Social Security Disability

The process of applying for Social Security Disability is not easy. I can only imagine how someone who is struggling with Huntington's Disease would be overwhelmed by it all. I am somewhat overwhelmed by it and I don't have the cognitive issues that my husband and so many others do.

We filed the initial application towards the end of January. We filled out numerous forms on line that gave them permission to contact doctors for test results and medical history. We provided exact dates, addresses and phone number of each appointment. We gave extensive work history for all jobs he has had for the last 15 years - including pay. We even gave them our contact info and let them know that we had paper copies of all the test results, doctors appointment and medical history.

Last week, I made a call to the local office to see if we could drop off copies of this paperwork and even a letter from Robert's former employer who detailed the struggles he saw Robert dealing with and how they gradually seemed to increase as time went on. That in itself was beyond annoying. I would wait on hold anywhere from ten to fifteen minutes only to have my call disconnected. I would immediately call back and get a busy signal.  

Talk about frustrating

Finally after a couple days of calling at various times I was able to contact a live person. Yes, I cold drop the paperwork off at there office in a drop box because most people were working from home. I just had to put the name of the person handling our case. 

Then, this past Saturday (March 6th), we got a letter in the mail saying we needed to fill out yet another form and provide copies of all of this information no later than March 4th. Supposedly, this was the second request for this information. Considering I never got the first request, it was frustrating. Luckily, there was a phone number of our case worker and we were able to call her and discuss with her. 

Only problem... she is actually at an office in Albuquerque, NM. If we dropped if off, the office in Grand Prairie would have to scan all the stuff and then email to her for processing. This process could take several days. It would all depend on how busy the office was. I got the distinct impression that even though it was important and time sensitive to us, it really isn't to the Social Security Administration. 

All of this to say, we are only a little over a month in to the process and it is already overwhelming for Robert. Luckily, he has me as an advocate to help make sense of it all. I wonder what people who do not have someone to help them do.

It really does make you feel like you are beating your head against a wall. We are once again waiting, waiting, waiting. 

Why Now

My first post in a while got a lot of attention.

Mainly because nobody knew what was really going on behind the closed door of our lives.

Honestly, besides a few family members, our pastor and one of my co-workers, nobody had any idea about most of it. Plus, quite a few people were friends that we had acquired in the last five years so they had not read a blog post before. Many of them didn't even know about Robert and his Huntington's Disease diagnosis.

It wasn't necessarily intentional that we didn't share what was going on. It wasn't because we were ashamed that Robert was having issues. After 2020, our problems seemed trivial compared to all of those people that were dealing with family and friends that were fighting for their lives because of all things COVID. There were so many people that were struggling and I didn't want to burden them with our problems. So, I said everything was fine when it really wasn't. 

Then, I heard this song by Matthew West called  Truth Be Told. It was really convicting. 

The premise of the song is that we all like to lie and say things are fine when they aren't. We tell ourselves that we should have it all together and the people around us are living perfect lives so we should just keep everything to ourselves. 

Nobody wants to hear that our lives are a mess. Nobody wants to know that right now:

I'm broken

I'm scared

I'm worried

I'm stressed

I don't have it all together

Things could be better

But, I'm wrong! God already knows all of this. He already knows all about the mess that is our lives right now. He is just waiting for us to reach out to Him and ask for help. Sometimes, that help comes in the form of support from our friends when we admit that things aren't as perfect as we portray them to be. 

The outpouring of love and support that we got from all our friends and family was amazing. It meant so much to us and I cherished each response. It is so comforting to know that we have such wonderful friends and family out there that care.

I hope that I can return the favor. I want everyone one to know that I am here for you, too. I want to hear about the imperfect parts of your life, too. It is only through sharing those broken parts with each other and with God that we can truly get through the struggles. 

So, let the truth be told. Let me know why I can pray for you, too. 

And take a listen to the song.  Truth be Told

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.