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.
Tuesday, June 16, 2015
Tuesday, June 2, 2015
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.
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.
Subscribe to:
Posts (Atom)