My Favorites

There are so many resources that can be found on line about Huntington's Disease. Some are simply informational. Some provide resources and contact information for doctors, support groups and much more. Some are simply blogs like this one about people that are dealing with the exact same thing as my family. Here are my favorites.

The most important one is the Huntington's Disease Society of America website. This website is jam packed with information about the disease, where to find help in your area and even resources - including webinars - for the caregiver for an HD person. I am a frequent visitor to this site. In addition, I also like the Greater North Texas HDSA website. This one is for the local HDSA chapter in the North Texas area that has information about the happenings in my area. There are many other chapters and affiliates throughout the country. To find one in your area, choose chapters and affiliates from the About HDSA drop down on the home page of the Huntington's Disease Society of America website. It will ask you to enter your zip code and show you the closest chapter to you.

Another one for news and information about the disease is HD Buzz. The website's motto is Huntington's Disease Research News - in plain language, written by scientists, for the global HD Community. In other words, they take the important news out there about Huntington's Disease and put it in to words that you and I can understand. They don't use those big scientific words that we have no clue how to pronounce or what they mean. They even have a weekly newsletter that you can subscribe to for emails about the latest and greatest news. Or, you can get the information via a podcast if that is your preference. This is usually my go to when I see new news about a possible treatment or discovery since it is so much easier to understand.

Another good one is Huntington's Disease Lighthouse. This a website that is created by families with Huntington's Disease for families with Huntington's Disease. It is full of blogs, message, forums and so much more for families that are dealing with Huntington's Disease. It is created by others that are going through the same thing you are and is a good resource when you are looking for somebody to understand what you are going through. Who better than a person that is dealing with the exact same things you are.

We Have a Face is geared at raising the global awareness of Huntington's Disease. They do this using the most state of the art technologies to broaden everybody's awareness and knowledge of Huntington's Disease and even lesser know Juvenile HD.  My favorite thing on their website is the motto: Never give up hope, You are not alone.

The last two on my favorites list are both blogs written by others with Huntington's Disease.

At Risk For Huntington's Disease is written under the pseudonym of Gene Veritas. It is full of information about the writer's life and also updates on some of the new and promising research that is taking place. He also details some of the many happenings in his life. This blog does tend to be lengthy and full of a lot of hard to understand information, but it still very informative.

The other blog, Huntington's Disease and Me is written by a lady named Sarah who identifies herself as being in the early stages of HD. She is actually the one that started the HD Pie in the Face movement last year. Her blogs are more about the day to day life of somebody who is living with HD. She talks about her symptoms and how they affect her day to day life. It is an inside glimpse of what it is like for a person who is showing symptoms and how it affects everything and everyone around her.

These are my favorites. I hope you find at least one of these or any of the many others out there as useful as I do. More than anything, it helps to know there there are resources to help you and that others out there are experiencing the same things that you are.

It's Not The Worst Case Scenario, So Now What?

Did you hear that big sigh of relief earlier today? I am sure it was heard around the world. Robert and I both had huge sighs of relief when we saw the doctor for his test results. It wasn't the worst case scenarios that we were concerned about. He doesn't have leukemia or lymphoma. PRAISE GOD!

That doesn't mean he is out of the woods and nothing is wrong. He has Idiopathic thrombocytopenia purpura. The easiest way to explain it is that his immune system is actually attacking his platelets. Obviously, this is still a huge concern because anytime the immune system is attacking the body's normal functions, there is a problem. So, we are not out of the woods, yet.

However, it is treatable. He will be given steroids to suppress the part of his immune system that is attacking his platelets. The doctor will also continue to monitor the counts to make sure they rise and that he is doing better. He will also have a CT scan tomorrow to check and see if his spleen is causing the problem. If there is an issue with his spleen, he may have to have it removed. That is an issue that will have to be addressed depending on how he responds to the steroid treatment.

All in all, though, I can live with that because it is a treatable issue. I also have to give thanks to the many friends and family that prayed for us over the last week. Those prayers gave Robert and I peace and strength to get through the week. We love and appreciate each and every one of you.

The news of the day is that we can get his platelets up and that eases the worries of increased danger of HD related injuries. Huge relief, major answer to prayers and thanks to God for taking care of us.

As If Dealing with Huntington's Disease Was Not Enough...

For the last 18-24 months, Robert’s platelet count has been dropping. A healthy count for platelets is a range of 150,000 – 450,000. As of yesterday, the count for Robert’s platelets was 36,000.

Platelets are very important. They are cells in our bodies that move throughout our blood and “bind-together” when they find damaged blood vessels. In other words, that cut you just got on your leg is full of platelets binding together to clot the blood and makes the bleeding stop as well helps to form the scab that protects the area until it is completely healed.

Low platelet counts can cause easy bruising, trouble getting blood to clot from an open wound and even frequent bleeding from things like your nose, gums and GI tract for no reason at all. Putting pressure on the wound or bleeding can help assist in making it clot but it will take longer for that to happen and can result in significant blood loss if not careful.

There are many reasons for a low platelet count, too. It can be a medication he is taking, an issue with kidney function or an enlarged spleen. There can also be certain types of anemia that could be causing it. These are all easily treatable. However, it could also be the result of certain types of cancer in the body – mainly leukemia and lymphoma.  Those aren’t so easily treatable.

His primary care physician referred him to an oncologist to help determine the root cause of this dropping platelet count. Yesterday, the oncologist performed a bone marrow biopsy in his office and now we wait for the results. That appointment is next Tuesday.

A bone marrow biopsy is where the insert a needle into the bone and a small sample of core of bone marrow is captured.  Robert says it wasn’t too painful but it was did feel a bit strange and caused some minor discomfort.

Of course, we automatically questioned if this is somehow related to his Huntington’s Disease. All of the googling we have done and the conversations we have had with the doctors say there is no real proven connection between the two. This issue appears to be something totally different and unrelated. But, if we are unable to find a treatment for this and increase his platelet count, we have a HUGE problem in the future.

One of the most common characteristics associated with Huntington’s Disease is when the chorea (involuntary movement) sets in. This causes the unsteady gates and frequent falls that many associated with HD often experience as the disease progresses. This is the time that a normal person seeing an HD person on the street would simply think “Oh, he must be drunk”. 

So, being prone to falling with a condition that will cause problems making your blood clot and heal itself when you do fall can be a huge issue.  

Imagine the scenario: you are experiencing  the chorea – imagine Muhammad Ali’s uncontrollable shaking from his Parkinson’s – and it causes you to fall as you are walking along the sidewalk with your wife. Where you elbow lands was a piece of glass that causes a nasty gash your arm.  Your wife tries to put pressure on the gash to stop the bleeding but she can’t because of the chorea. 

Obviously a bad scenario all around.  That is something we want to stop from happening as quickly as possible.

For today, we await the results of the test done yesterday. Until we have conclusive evidence of what the root cause of the issue is, we cannot treat it. Hopefully, it is just a minor issue that we can easily treat and erase the low platelet count in his body. We pray for God’s healing and guidance as we progress down this path he has laid out for us. 

Why I Am For It

This is one of those controversial posts that will upset a lot of people. I get that, but remember that this is my opinion on the topic. Yours might be different, and that is okay.

I am not going to lie! I love animals. I have a dog and would be seriously upset if I were to learn that somebody was using her for testing of any type of drug. However, if the testing they did on her resulted in a cure for Huntington's Disease, I think I could get over it.

There are many schools of thought about the testing of medicines on animals. One is not more right or wrong than the other. Instead, each person has to take a look at why they are for or against the idea. I am for it. Here is why: I WANT A CURE TO HUNTINGTON'S DISEASE! I want a cure so that I don't have to watch anybody else in my husband's family succumb to this dreadful disease.

Today, I want to share with you some of the pros of animal research.

Animal testing and research has helped in finding many drugs and treatments that have helped to improve health and medicine. Things like HIV drugs, insulin and numerous vaccines were found to be effective by testing on animals first. Animal testing has become vital for improving human health.

Animal testing also has helped to ensure the safety of many drugs before they are tested on humans. This has helped to find many drugs that could potentially cause harm to a human before it is ever administered to one. This has helped to save many lives as well weed out many treatments that don't work.

Alternative methods that are often proposed are not viable options. In order to determine the success of a medicine, it is has to be tested in a human or something that closely resemble a person. There is nothing that can be genetically created that resembles the makeup and composition of a person other than some of the many mammals that are used in testing.

The animal most often used for Huntington's Disease research is mice. Testing in mice has resulted in a lot of new information about how Huntington's Disease. Researchers now have a better understanding of how the disease affects the body. For example, one of the most recent things that have been learned is that there are changes to a person's blood supply before HD begins affecting the brain that change how the body reacts to the disease as it progresses through the body. Studying the affects of HD in mice has also resulted in new techniques to screen for for genes that contribute to HD as well as may other neurological disorders. They have also been able to test different options for gene silencing, too. This is an idea that if the gene that causes HD (or any other genetic disease) can be silenced so that it no longer affect the body. None of these things would have been possible by studying done on people that have passed as a result of Huntington's or on an animal that does not have many of the same characteristics of a human.

So, while I can understand that many are against testing on animals, I have to say that I am for it. If for no other reason than the testing puts us one step closer to a cure for Huntington's Disease.

Feeling All Alone in the HD World

Currently, there are about 30,000 people that have tested positive for Huntington’s Disease in the United States. For a country that has nearly 319 million people, that translates into .00009% of the population. A very small number when you think about it. It is so easy to feel like you are the only family out there living with this diagnosis. It can certainly make you feel all alone.

However, estimates are that there are well over 200,000 people in this world that are at risk of having the disease or are currently unaware they are living with the disease.  That is more than the population of 15 individual states and more than the population of North Dakota, Vermont, Washington DC and Wyoming combined. That number does not include the number of family members that do not have the gene but are affected by this disease in another family member. So, you are not alone, even though it does sometimes feel like you are.

I know I was personally amazed when I found out people I know that were in some way affected by Huntington’s Disease. Given the fact that I had never heard of it prior to my husband, I was quite surprised to learn of how many people affected by this disease are out there. Learning of the others out there going through the exact same things that we have has made it a lot easier to deal with. It has also been such a great help to be able to discuss day to day trials of living with HD with people that really know what you are talking about. People that are dealing with the exact same thing or have been there and done that are a wonderful asset in helping cope with the many issues that can arise from HD.

Where is the best place to find that support, you ask? A support group! Getting involved in our local support group was one of the best things that we have done when it comes to dealing with Huntington’s Disease. It gives us the opportunity to be with others who truly know and understand what it is like to live with Huntington’s Disease as a part of your everyday life. Our support group meets once a month. While we cannot make every meeting because of Robert’s work schedule, we do go to the meetings when his schedule permits. It is always a blessing to be with others dealing with the same things.

How do you find a local support group? Visit the HDSA Local Resources page of the Huntington’s Disease Society of America website. This page has resources for all types of things from Support groups to Therapists and even In-Home Care resources. Here you can choose what you want to find and enter you zip code. It will find the nearest ones to you.

You may think that you don’t need to get involved in the group because you no longer have a family member that has HD or that person does not live near you. I want you to know that is not the case. We have several people in our group that have lost a loved one to the disease or have a family member living in another state that come to our group. We even have friends of people that have been diagnosed with Huntington’s Disease. Each person there has a lot to offer the rest of the group and they also get support from the rest of us as the deal with the many different aspects of having lost a loved one to the disease or being away from that loved one who has it.

So, I strongly encourage you to get involved in a group. It is a great resource as you navigate a world with HD and help eliminate some of that “alone in this world” feeling many can get in world that doesn’t know about Huntington’s Disease.