I Choose Joy

At our Womens Christmas Party at church the other night, the speaker talked about choosing joy. One of the things she mentioned is finding joy in the obvious things in your life. 

This ring brings me joy. Obviously.

it does bring me joy for some of the obvious reasons. It is a very beautiful ring. It symbolizes that  my amazing husband chose me as the person to spend his life with. He bought me this ring to symbolize that he thinks I am worthy of his love. These are obvious reasons it brings me joy.

However, it is the reasons that are not so obvious to the outside world that bring me the most joy when I look at this ring. 

About a month ago, I took my ring back to the jeweler for the routine cleaning and inspection. A few diamonds were loose. it had to be sent off for repair. It came back and still had a few stones loose so it had to be sent back for repair, again. So, for an entire month, I did not have this ring on my finger. Having my ring back makes me very happy.

More than that, this ring on my finger means that my husband is still here with me. It means that he is still a part of my life. I say that not because I think he will leave me but because I know that my time with my husband is limited. Not to be morbid, but the reality is that I will most likely not have him with me for as many years as most people enjoy with their spouse. That is Huntington's Disease. 

If the last year has taught me anything, it is that our time together is limited. More limited than what we thought it might be a year ago. So, each day I have with my husband is a day to celebrate. Before long, they will be nothing more than a memory.

This ring brings me so much joy. Each day I wear it is another day that I get to spend with him. I choose to find joy in this very obvious symbol of the love we share. 

What a Difference a Year Makes

Tomorrow, we leave for yet another trip to one of the Mouse's houses to celebrate our anniversary. This year, we are headed to Disneyland to celebrate 17 wonderful years together. 

I can't help but think of last November. It started out great! We went to Disneyworld and had an amazing week celebrating our 16th anniversary. However, the month would end with me having Covid and Robert checking himself into the hospital because of severe depression.

These events are the ones that lead us to the realization that Robert was beginning to show signs of Huntington's Disease. These are the events that resulted in his applying for disability. What we didn't realize is that this would be a blessing in disguise.

What?

The months leading up to being approved for disability were very hard for Robert. It was very stressful. He was worried about our financial situation and felt depressed because he was not able to help contribute to things the way he had before. He felt like he was a failure. 

That changed when we learned his application was approved. Once he knew there was steady income coming in again, he was able to relax. Plus, he now does some basic maintenance at the church a few days a week. All of this has actually helped to improve his mental state. He has been able to stop taking the anti-depressant that he was on.

So many things have happened since this time last year. Some good, some bad. Some things we were prepared for, some things we weren't. However, though it all, we have seen God's hand in all of it, in small and big ways. 

Now, as we prepare the last minute tasks for another anniversary trip guaranteed to make some amazing memories, we look forward to what the next year brings. I'm sure their will be many ups and downs but we are in it together and know that God's with us every step of the way. 

Things Nobody Tells You

It was one month ago today that we received the news we had been waiting for since January. Robert's application for SSDI was approved. Definitely news that is worth celebrating. However, there are things that nobody tells you about being approved. Things we have had to learn on the fly. 

The first one is when you actually receive your check each month. We assumed that you would receive a check around the third of the month like most people do with Social Security Retirement. That is incorrect. The day you receive your check is based on your birthday. So, Robert will be getting paid on the third Wednesday of the month. While in the long run, it doesn't make must of a difference, it is useful information. For us, it affects how we manage our budget each month. 

The second piece of information that we were not aware of pertains to taxes. Depending on your income, you may or may not have to pay taxes on your benefits. Robert's sister and brother have not had to pay taxes on their benefits because their monthly income is less than the taxable portion. However, if you notice below, for married couples, if the spouse is working, as a couple they will most likely have to pay taxes on the disability. 

You do have the option of having taxes deducted from your check each month if you would like. For some, this is beneficial to help from having that big tax bill at the end of each year. Either way, this is information that everybody needs to be aware of. 

The third piece of information is that you can actually do some limited work while on disability.  However, there are some restrictions. 

In other words, you can go work at Walmart as a greeter part-time if you want. I think this is one that really matters. For someone like Robert, having the ability to do something simple every day will be so helpful. While he will not be your neighborhood Walmart greeter, he does have some options to do things he already knows how to do. This will give him a purpose each day and a reason to get out of bed. Plus, it will help that part work ethic part of him that still exists. It makes him feel like he is helping to contribute to our household income. This all in turn helps him mentally as well. A person's mental state matters more than a lot of people realize so having something like this that will help is extremely helpful.

This journey is far from over. We continue to learn new things each day. As always, I will endeavor to share what we learn to help others navigate this world that is Social Security Disability. 

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. 

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.