One Doctor Appointment Leads to Another

It’s been an interesting few months since that trip to the ER when Robert thought it would be fun to just randomly pass out. While he hasn’t had any issues where he actually passes out, he has had several times where he gets light-headed when he stands up. 

We recently had his quarterly check-in with his neurologist and mentioned what happened. It’s a partial brain thing so we wanted her to know. She didn’t think it was HD related, but a circulatory thing. She checked his blood pressure and it was 102/78. Then she had him stand up and it dropped to 98/72. Yes, the numbers are correct. That’s low! She told us that was most likely the cause of the Vagal Nerve episode. Her advice was to go back to our PCP and have some tests done to figure things out.

That led to blood work and more doctor appointments. 

First the cardiologist. He said something interesting. There is a connection between HD and your heart. Some new studies are showing that HD can impact the way the circulatory system works. I was not surprised. In my mind this makes sense. HD affects the brain so it stands to reason that it could impact any one of the systems that operate in your body. So maybe they are connected. 

The doctor gave him medication to help raise his blood pressure and put him on a heart monitor for a week. I keep joking that I am now married to IronMan. For a week, anyway. 

The second thing it revealed - or reminded us about - was his low platelet count. It has been a few years since I talked about that but you can see it on some previous blogs from May and June 2016. This is not a new thing. However, it concerned the doctors so they wanted us to go see an oncologist for further testing. 

Fortunately, she was not overly concerned by it. She says that yes his count is low by what is determined to be "normal standards" but not a huge concern. She too ordered some more tests and blood work to further assess what is going on. 

Now, we wait for test results and determine the next steps. 

One thing this experience has taught us is that we need to be vigilant in all areas of Robert's health. While it may seem like an insignificant thing and maybe not related to HD, there is still a chance that it is. It is still important to tell the doctors all the info and report anything that does not appear normal. They might be related to your current condition, but they might not be. It might be something new, but it might not be. Or, it could be something new. You won't know until you talk to the doctor about it. 

An Ode to Bill

On the same day that Robert had his Vagus Nerve episode, his brother Bill also finally succumbed to this horrible, awful disease that is Huntington's Disease at the age of 57.

His passing comes with many mixed emotions for the family. There is a lot of bad blood between him and other family members for a number of different reasons. Bill was never the easiest person to get along with. He could be a very mean and combative guy. And that was before HD even started to affect him. 

From previous blogs, you may remember that he lived with us for a time, too. It was hard. He was not an easy guy to live with on his best days. It was very hard on Robert, too. He struggled with his feelings of anger over the things that went on when they were children and his servant heart that made him want to take care of everybody. It was not easy. 

In the end. the youngest brother Kevin took him in and let him live with them for quite some time. Once it became difficult for Kevin to adequately care for him, with Bill's blessing he was moved to a nursing home to be cared for. In December of last year, when he fell and broke his hip, the decision was made to move him to hospice. He was in no condition to withstand the surgery and rehab. Instead, they did their best to make him comfortable and as pain-free as possible until the end. 

But in the end, the passing was peaceful. The nurses at the hospice center took him out on the deck and let him watch the birds chirping away while they stayed with him. He was able to pass peacefully and not alone. And, he is finally free from the disease that ravaged his body for so many years. As Robert said at one point, he is now in Heaven dancing with their mom to Elvis music.

Over the weekend, Robert and I made the 1,000+ mile journey to North Carolina to be a part of his memorial service after he had been cremated. In the words of Kevin, the plan was to spend the day doing all the things Bill loved to do - eating, smoking, stealing people's stuff and fighting each other. We did some of that. We ate and some people smoked and the guys all played football and badminton instead of fighting each other. Some fighting and stealing were done but in a joking and loving way. We think Bill would have been happy to see it all. 

We also spent some time reminiscing about Bill and forgiveness and the hope that he realized everybody there and forgiven him for the things that went on when they were children. It was these memories that made everyone come to the realization that Bill took the brunt of the abuse they suffered from their father. He would often stand between their dad and whoever he was going after at that time. So, it is understandable that he was a bit angry and bitter. He did have a hard life. 

He is at peace now. His body is free from this awful disease that has already claimed his mom and is impacting the lives of other family members around us. That's all anybody can ask for.

In the words of the song by Vince Gill - "Go rest high on that mountain,  Son, your work on earth is done" 

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.