An Appointment With the Neurologist

Robert had an appointment with his neurologist yesterday.

Mainly because he it has been over a year since his last appointment with her and he is supposed to have yearly appointments to discuss his progression in the disease. It was also in part because he has been experiencing an issue with choking on certain foods for a while now. He has to be careful what he eats because it can cause him to start coughing and it raised some concerns for us. After all, choking can be a major problem in a person with Huntington's Disease. He also wanted to mention the struggles with his platelet count and get her thoughts on it. And discuss his continued Restless Leg Syndrome issues.

He walked away with the best news ever:

Do you see that?  "NO SYMPTOMS OF HUNTINGTON'S DISEASE". 

Now, for anybody that has tested positive for Huntington's Disease before they show symptoms, you know how awesome that little piece of news is. Especially when the minor symptoms such as the chorea and cognitive issues usually begin showing up somewhere between the ages of 35 - 45 and you will be 46 in a few short months. A notation like this one is the best news you could hope for. Even though you know there are still some issues that need to be addressed. 

The doctor thinks that the issues with the choking have more to do with acid reflux and other gastroenterological issues versus Huntington's Disease. Based on his symptoms and how the issue manifests itself, it does not present as a normal symptom of Huntington's Disease. So, he is being referred to a gastronterologist to discover the real issues. 

As we thought, the platelet count issue is not related to Huntington's Disease. It, too, is a separate issue that will continue to be addressed by his Hematologist. She also said that taking out his spleen should not be a problem. I was a bit concerned how the removal of the spleen would present problems at a later date, but according to her - it is a non-issue. 

So, overall a very good appointment.Yes, he does need to follow up with another doctor about some concerns and we are still dealing with the platelet count issue. However, that one little statement makes it a very successful appointment and you can walk away feeling much happier about how things are going. I know Robert did. 

That Method Didn't Work, So What Do We Do Now?

Back in May and June, I shared with everyone the details of Robert's diagnosis of  Idiopathic Thrombocytopenic Purpura. This is an issue where his body is attacking his platelet count and causing it to drop over time. Since your platelets are what help your blood to clot, they are kind of important.

When he was given the diagnosis, the doctor put him on a daily dose of Prednisone. So, for those of you who may have thought it was putting on weight because of his puffy chipmunk like cheeks, it was because of the medication. He had to have blood work done just about every week to see if it was increasing his count. In the beginning, it was. After just a couple of weeks, his count increased greatly. We were ecstatic. The medicine was doing its job. But, then his count started to drop again. The doctor said it is not uncommon for a dip every now and then. It will usually spike back up again. Only his hasn't. While it is not nearly as low as it was when he was first diagnosed, it is still low. 

So, the doctor wants to try a new approach. He wants to do an infusion similar to what they do for many leukemia patients that have low platelet counts. This will mean he has to spend anywhere from 4 - 6 hours a day, once a week in a chair with an iv in his arm to pump the medicine in him. This is a fairly new treatment for ITP and has been shown to have great results. We certainly pray it works on Robert. If not, the next step is to remove the spleen.

The doctor assures me that having his spleen removed is no big deal, but I don't see it that way. Your spleen helps produce your white blood cells. Your white blood cells help fight infections. So, you are at greater risk for developing many infections. Throw in a disease that can cause you to choke, causing fluid to collect in your lungs and put you at a higher risk for pneumonia, it can be an issue. I want to keep my husband around for as long as possible. I don't want to add more complications to the disease that I know will one day take him from me. 

Plus, the recovery time from this surgery can be lengthy and difficult. There is usually a lot of pain and discomfort as well as risks that are associated. For now, all we can do is pray that the infusion treatments do the trick. He will start them in a couple of weeks and I will keep everyone posted on the progress of them.

Her Legacy of Love

Five years ago today, we were getting ready to make the long drive to Cleveland, OH to say goodbye to one of the most important people in my husband’s life. His mother had passed away the day before and we were make preparations to make the trek to celebrate her life.

So, here we are five years later and I have such bittersweet emotions. I am deeply saddened that she is no longer with us. I know that each one of her children are, too. However, I am relieved because I know that she is no longer suffering from the havoc that Huntington’s Disease caused on her body. I feel so bad for Robert, Debbie, Craig, Bill and Kevin because they no longer have their mother in their lives. They no longer get to call her up and share the joys of their lives with her. But, I am happy because she spent her days shaping each one of them in to the wonderful sons and daughter they are today. I hate that we lost her – and many others – way too soon to this dreadful disease. I am hopeful though because I know we are one step closer to finding a cure for this disease that rips apart so many families.

Above all else, I am so grateful for this wonderful woman that I only had the opportunity to spend time with on four occasions in the six years that I got to know her. Our time together was short. She was already showing the effects of Huntington’s Disease when I met her. She could only talk and carry on a conversation the first time I saw her. And even then, it was more like talking to a two year old where she only said a few words instead of full sentences. What I remember about those conversations is what she would say – almost on repeat – to Robert several times a day.

She constantly told him “I love you”. Even when she couldn’t say much, she worked hard to say those words and to let him know that he was loved. That is the legacy that she left behind that still resounds today. Above all else, she loved her children dearly. They meant the world to her and she made sure they knew that. Ask any one of them, and they can share story after story about the loving, thoughtful things she did for them. 

There is a saying that the legacy you leave behind is the life you live lead today. The life that Cheryl Everett lived was a life of love of her family. That is the legacy that lives on today. Nobody that had the opportunity to have her as a part of her life would ever question her love for them.  So, that is what I choose to remember about her today – that legacy of love that she left with every one of her children, her grandchildren, her sister, her brother and every other person she came in touch with. Remembering that makes me happy because I had the opportunity to spend a few moments with her and experience that love for myself.

It’s been five years since she stopped suffering. That doesn’t mean we aren’t still saddened or that we have stopped missing her, but it does get a little easier each day. Her legacy of love lives on and I see each and every day in her children.

The Importance of Reading the Labels.

A few months back, I wrote about Robert and his low platelet count – the tests and the results.

Well, he was prescribed Prednisone to take for a few months to boost his platelet count. Then, once it gets into the “acceptable range” he will be weaned off the medication and monitored to see if his platelets drop again. So, he has been taking the medicine. But apparently not enough.

When he went to the doctor last week, the doctor was concerned because the count was not as high as it should have been at this point in the treatment. Plus, he was quite surprised that Robert was not feeling any of the real side effects from the meds other than a decreased appetite and a little difficulty sleeping. He hasn’t been dealing with the swollen feet, finger or hands, agitation or nervousness or many other things. The decreased appetite and sleeping problems are also not that bad. Of course, when he commented to Robert that he should be halfway through his second bottle of meds and he is still on the first one, Robert began to suspect something.

Neither one of us are entirely sure where it came from, but for some reason, we both thought he should only be taking 1 tablet a day. Turns out, that isn’t the case. He is supposed to take 8 tablets a day. No wonder he wasn’t feeling that many side effects! That has changed and he is now taking the 8 pills a day as instructed, but it brings up a very important point.

It is very important to read the instructions on medications and make sure you are taking the correct dosage. Too much or not enough will have results different from what is expected. In this case, Robert’s platelet count was not going up nearly as fast as the doctor thought it should and was going to consider some alternate treatments. Instead, we are waiting to see if he responds the way the doctor thought he would when he is taking the correct amount of medication every day.

This is also important for a care-giver. Sometimes, the person you are taking care of may not be taking the right amount. Instead, they take the amount they wish to take. It is up to you to make sure you read all the prescriptions and dosing information to be sure you are giving the correct amount. It could make a huge difference in how the person feels and responds when taking the medication as really instructed.

A Bleesing in Disguise

It seems my refrigerator decided that it wants to be a freezer. Really. My refrigerator started to partially freeze things for some reason. That does create a bit of a problem since I don’t like my milk to be slushy when I drink it. So, on June 13^th, I called my home warranty company to report this issue.

Little did I know that two months later, I still wouldn’t have this problem fixed.

Long story short, there was a serious of missed appointments from the contractor that was supposed to be fixing the issue, wrong parts order and a bunch of misdiagnosed problems. They kept saying it was one issue and ordered parts to fix it only to find out that really wasn’t the problem and another part ordered. In fact, at one point, my refrigerator was doing double duty as a freezer. Everything in there was a solid block of ice. That makes it difficult to add milk  to your cereal or any other food recipe that calls for milk when it is a gallon sized milk cube. 

Finally, after the 6^th no call/no show we told the home warranty company that we wanted a different contractor to come out and repair the problem. We were tired of the original company that was assigned and all of our issues with them. Lies, excuses, wasted time and parts being held together by duct tape had made us reach our breaking point. We wanted someone new to come out. Thankfully, the home warranty company listened to us. Either that or the complaint filed with the BBB was enough for them to understand we were highly ticked off at the whole thing. A new contractor was assigned; that turned out to be the biggest blessing of all.

The new contractor showed up when he said he would which was a huge point in his favor but that was just the beginning. Robert gave him a brief history of the problems, he took a look at how it was being held together with duct tape and said “You need a new refrigerator”.  He said the parts would not go back together 100% correctly at this point and we would always have issues with it no matter what so it needed to be replaced. Five minutes in our house and that was his recommendation.  Woohoo!

We had two options for replacement. We could receive a comparable model refrigerator or we could have a check cut for the cost to purchase one ourselves. We opted to have the check cut and purchase one ourselves because we wanted to upgrade. Our current one is a black side by side and we want a stainless steel French door. A little more pricey, right? Not necessarily. We have actually been able to find one that we really like at one of the nearby outlet stores for just a few dollars more than the check we are going to be given. Granted, it might have a few scratches on the side and maybe a dent on it, but I can live with that. It was bound to happen anyway from day to day use at my house.

Now, I just have to wait to receive the check and for it to clear the bank; I have to wait for the refrigerator to be delivered to my house. I know this adds a few more weeks to the wait. I can see the end in sight, though so I am okay with that. I am getting a new refrigerator to replace the one that I currently have and it will cost me next to nothing; an upgraded model to boot! I would consider that a huge blessing in disguise.

The reason I share this story is to remind you (and myself) that many times the current hardship we are in leads to a greater reward. We just have to get through whatever it is that is going on. I have spent so much of the last two months angry and frustrated with everything that has been going on that I couldn’t see the bigger picture. How many times can any of us say that about something that is happening in our lives at this precise moment? We get so caught up in how horrible life is today that we can’t see beyond the awfulness of it all. So many times, the trial that we are enduring today is preparing us for something so much greater that God has for us. He is just waiting for the right time to reveal his ultimate plan for us. In this case, I have dealt with a lot of annoyances and inconveniences for nearly two months, but the end result is going to be worth it.

So, remember that no matter how bad it all seems today, what God has planned for you tomorrow far outweighs the frustration you have today. I know this is easier said than done but I hope that I have given at least one person a little bit of encouragement about the trial you are going through today.