That's a New One

When you have Huntington's Disease and you have a weird thing happen to you, you tend to freak out. You wonder if it is a result of the HD, or just a fluke. Especially when it is something related to the brain. Today was one of those days.

I was at work and got a phone call from Robert that he was feeling really lightheaded and throwing up. That lovely norovirus is making its rounds again so I didn't think much of it. I just ordered some Gatorade from 7-11 to be delivered to the house and continued working. 

A couple hours later, I get a phone call from what I assume is the hubby. Only it wasn't. It was the guy that we had coming out to give us an estimate on having the gutters replaced. He wanted to let me know that they had called 911 because Robert opened the door and promptly passed out. He came to but passed out again. All while I was at work. Oh! And he hit his head pretty hard when he passed out the first time. 

I immediately came home and we went to the hospital where they started running all kinds of tests to see what was wrong. As we waited, I worried that this was something that was caused by his HD. After all, there was a lady in our support group who frequently passed out and had seizures as a result of her HD. Granted, these symptoms are rare, but they do happen. 

Fortunately, it doesn't appear that that was the case. From the beginning, his vitals were normal. Tests showed no results of any heart issues or a stroke. His blood pressure was a little low but not alarmingly so. 

Instead, it was a result of his Vagus Nerve being overstimulated. 

What is that you ask? I had never heard of this nerve before today, either. 

The Vagus Nerve is the main nerve that controls your parasympathetic nervous system. This system controls your digestion, immune system and heart rate. 

The doctor thinks what happened is that the system was overstimulated - most likely from his vomiting as a result of a stomach bug or something he ate. Overstimulation of this nerve causes the body to shut the system down to reset it. In other words, it drops your blood pressure, heart rate and blood sugar so that you pass out. Your body resets itself and you come to and everything is fine. However, since they moved him off the floor and woke him before his body fully reset, it caused him to pass out again so his system could try to finish resetting. 

Once they got him in the ambulance and not moving around too much, his body was able to return to normal. By the time we reached the hospital, he was fine. Slightly dehydrated, still a little shaky from the whole ordeal but nothing major. They did a CT Scan of his head since he hit his head in the fall, a bunch of blood work and some urine samples and everything was normal. 

After about three hours in the ER, we were sent home with some Zofran in case he is nauseous again and the instructions to come back if he has any more issues. So far, after about six hours, he has been able to eat some food with no issues and is feeling much better. A little tired and weak but that is to be expected given everything that happened today. 

When something happens with Robert's brain, it always scares me. Since Huntington attacks the brain, anytime something out of the ordinary happens with it, the fear that it is the result of HD is real. In the back of your mind, you always wonder if this event triggers the advancement into the final stages of the disease. Is this the thing that changes everything? 

 

Thankfully, it appears that this was just a fluke thing that happened and not related to Huntington's Disease. I learned something new today as well and always say it is a productive day if I learn something new. 

However, in the words of a friend, Robert isn't allowed to scare us like that again. 

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...