The HDSA and Team Hope

The Huntington's Disease Society of America (HDSA) is the largest non-profit organization dedicated to improving the lives of all who are affected by Huntington's Disease. Not just the gene-positive person, but the gene-negative family members and friends, too. There mission is to provide "help for today and hope for tomorrow" by promoting and supporting research and medical research to end HD and to assist those affected by HD to cope with the problems the disease brings. They also strive to educate health organizations and professionals and the general public about the disease. The HDSA is dedicated to provide the family services, education, advocacy and research that will help those affected today and also hope for a cure tomorrow for those family.

The HDSA is a 501(c)(3) organization that was originally founded by folk singer Woody Guthrie's wife - Marjorie Guthrie. Marjorie began seeking other families that had been affected by this dreadful disease soon after she lost her husband to HD. This lead to the Committee to Combat Huntington's Disease created in 1967 by a handful of volunteers. Later becoming the HDSA, the organization continues the mission she started with 54 community based volunteer chapters and a national office that provides leadership, support and guidance to the families of Huntington's Disease.

This support and guidance is provided in many different ways. There are support groups located throughout the country, publications for family, doctors and friends to help better understand the disease, assistance for the care giver, and the most current news about research and clinical trials that are going on. You can learn more by visiting their website.

Each year, in various places around the country, the HDSA also has a fundraising walk called the Team Hope Walk. The goal is to raise money for more research and study to learn even more about this disease and also provide assistance to the families living with HD. This will be the second year that Robert and I have participated. This year, it will take place on October 20, 2013. This is 6 days after the second anniversary of Cheryl's death. We will be walking in honor of her and hope you will consider sponsoring us. The HDSA is an important part of our lives and the lives of the many across the world who must live with this disease. Your donation will help the goal to eradicate this disease so that no other family will have to suffer the effects of HD. 

Please visit Cheryl's Kids and donate today. We appreciate your support.

The Power of Prayers and Faith

I have made no secret about it. I am a firm believer in God and all the Bible has to say. I know that He can and will perform miracles in the lives of those who love Him and believe in Him. I may not have experienced a miracle myself but have seen it happen to those around me. Or so I thought.

However I have begun to wonder if maybe I have been seeing a small miracle taking place in the life of my husband but haven't attributed it to that. It started when one of our fellow church members approached Robert and said he felt led to pray for healing for Robert and that God wanted to do a miracle in Robert's life. As he said "God spoke to me this morning to pray for Robert. I have a heavy heart for you guys. God is more than able and will heal."

And this got me thinking... In Robert's mother, his sister and his brother, they were already showing a lot more symptoms at Robert's age than Robert is showing. History has shown that when it is passed on by the mother, the time of symptom onset is usually the same as it was for the mother. So, in all honesty, based on these patterns, Robert should be showing more symptoms that what he does. Now, it is possible that some of it could be the stress of various situations that each of them were going through or any other number of things. But, I believe that it is part God. God has given Robert one of the biggest hearts for service of anybody I have ever met. And if God has a plan for Robert to serve for a long time to come then Robert must be in good health. So, I like to think that God is keeping Robert healthy so that he can continue to fulfill the plan God has.

To add to this is some additional recent events that have taken place. Sometime last year, Robert went to a neurologist specializing in HD for the first time. This doctor performed some various simple tests designed to test his motor skills, memory and cognitive skills. To be honest, Robert did not do well at all.  He struggled with all of them. Especially the memory ones. It left us feeling a bit down and disappointed thinking that Robert was further along in the disease track than we had thought. It was a bit disheartening. But, we haven't been back to this doctor. He is located at Southwestern Medical Center in Dallas which is a bit of a drive with crazy traffic and major inconveniences to get to. The fact that it takes an hour with little traffic to get to the office does not make it an easy journey for us.

But, as many in the HD world know, to find a doctor that specializes in HD is hard. Not many of them have enough knowledge to work with it properly and provide the right combinations of medicines and therapy that  work for HD. And since no HD patient is the same, a doctor that understands all of this is paramount.  And distance to the doctor is important. Especially as the disease progresses. For a person with advanced stages of HD to sit in a car for an hour to go to the doctor is very unpleasant. Both for the HD patient and the caregiver. We began talking to people in our support group about other doctors in the area that treated patients with HD. And there is one that comes highly recommended by many in the group within 10 miles of our house! A doctor this close to the house is an answer to prayers in itself.

So, a couple of weeks ago, Robert made his first visit to this new doctor. She performed a lot of the same tests that the other doctor did. Only this time Robert did much better. The biggest one that meant so much to us was the memory test. He was given five words at the start of their conversation to remember. Then about 10 minutes later, he had to tell her what those words were. And he remembered all of them. With the first doctor, he couldn't remember 3 of them. So that is a huge improvement. In addition, the other tests had much better outcomes.  Visiting this doctor was a totally different experience than the previous one.

I am not saying he no longer carries the HD gene. A test has not been performed to verify that. All I am saying is that based on the information we know about HD, the history of the disease in his family and the results of two doctors visits, something is different in Robert as compared to the rest of his family. And I chose to believe in the power of wonderful praying friends and God's hand in our lives.

We don't know what the future with HD holds, but we know who is in charge of it and have the utmost faith that it will all work out in a plan that will bring glory to God as a result.