Your Basal Ganglia looks great!

Last Friday we went to the neurologist to get results from Curtis's MRI. I wasn't sure what to expect but I was honestly worried that she would tell us it was worse than we expected. The doctor came in and of course took forever to look at the images and read the results, those minutes were a little stressful. Then she said the best words ever, "your basal ganglia looks great!" The basal ganglia is the part of the brain that controls movement, emotion, and cognitive ability. This is the part of the brain that gets destroyed by Huntingtons disease. So this means that so far HD hasn't done damage to his brain yet! Praise God! All of your prayers are working! Now we get to keep working hard to protect his brain.
The only abnormality on the MRI was that he had iron deposits near the basal ganglia. Of course we had no idea what this meant and sadly our doctor didn't either so she pulled up trusty google to look it up. We have started to do our own research on it too and it apparently is normal for any type of neurological disease. No one really seems to know how it all correlates but it does seem to point to being another marker/symptom of HD. So the MRI results still seem to be consistent with him having HD.
We moved back to our home town this weekend so now we get to start figuring out the next steps. Our insurance has still not gotten a geneticist in our network so that we can get the official test done to be diagnosed. So now we are going to try to go through the VA or UCLA to get that done. He is looking for a job that will be much less stressful so we can continue working on keeping his brain healthy for many more years. I am going to be starting a Doula business so I can help support the family but still be able to spend time with the hubby and kiddos too.
The biggest prayer requests right now are that Curtis would find the right job and that we would be able to get medical insurance of some type when ours ends at the end of the month.
Thanks for taking the time to read our blog and pray for us, it makes our hearts so happy!

What is Huntington's Disease?

Now that you know Curtis is dealing with a likely diagnosis of Huntington's disease I wanted to take some time to give you a basic overview of this disease. "Huntington's disease is an inherited disease that causes the progressive breakdown (degeneration) of the nerve cells in the brain. Huntington's disease has a broad impact on the person's functional abilities and usually results in movement, thinking (cognitive), and psychiatric disorders." (Mayo Clinic) It used to be called Huntington's Chorea because the jerking movements that most patients have resembles dancing and chorea comes from the Greek word for dancing. I think this is so interesting because dancing is such a beautiful and artistic thing but most people with this disease are embarrassed and so tired from the movements.
This is a very rare disease which is why so many people have never heard of it. Approximately 1 in every 10,000 Americans have this disease. Everyone that has this disease has a 50 % chance of passing it to their children. There is currently no cure for this disease. Doctors try to treat the symptoms to attempt to slow the symptoms and help the patient function as long as possible. Thankfully some great research and clinical trials are happening now that are giving Huntington's patients new hope!
Some symptoms include facial movements, uncontrolled movements of other body parts, and unsteady gait. Loss of Memory, personality changes, and speech impairment. These are just a few of the many symptoms that people with this disease have to deal with everyday.
This disease affects everyone differently. Some symptoms are worse for some patients than others. The symptoms will gradually get worse until the patient will need constant help from others. Usually the time from disease onset to death is between 10 and 30 years.
So this is just the basics on the disease so you have an idea of what we are preparing for. It can all be very overwhelming but we are so thankful that God knows every detail of our future and that He will take care of us through it all. I cannot say that I haven't had days of anxiety and deep sadness but overall we have had so much peace even joy through this whole process. It has been a good reminder to keep living every day to its fullest.
If you want to learn more about this disease a great website is hdsa.org or you can even follow them on facebook, just search for Huntington's disease society of America.

Our Story So Far...

My Husband (Curtis) and I (Erin) decided to start this blog to hopefully spread awareness about Huntington's disease and also give hope and encouragement to those going through this disease. So I want to start by sharing our story leading up to this week.
My amazing hubby and I have been married for almost 9 years now and we have been blessed with three of the cutest kiddos ever. Curtis's dad had a disease called Huntington's disease which is genetic so we have always known that there was a good chance that Curtis would have it as well. His dad was diagnosed in his 40's so even though we knew it could start at any age we always assumed we had till his 40's till we had to worry about it. So even though it was always in the back of our minds we had decided to ignore it for awhile. A few months ago it got to the point that we couldn't ignore it anymore though. Curtis had fallen a couple times which could have been unrelated but it wasn't normal for him. He was having a lot of issues at his work, having a hard time remembering things or responding quickly under stressful situations. One day after a really bad morning at work I got one of the hardest messages ever, "I think I need to be tested for Huntington's." I pretty much cried for a few days straight because I was so overwhelmed by the thought of it starting already. He went into his regular doctor who agreed it was time to start testing. The main test that they do is a genetic test. This test has still not been done because our insurance has been making it difficult. So even though we really want to be officially diagnosed we are still waiting. The other part of the test is to see a neurologist. We went to meet our neurologist a few weeks ago and loved her. She did some basic tests for short term memory and balance and then asked tons of questions about symptoms and family history. She told us that she believes he is showing symptoms already and that his high stress job for the last 13 years has probably contributed to it coming on so early and so strongly. She told us that it was no longer safe for Curtis to work at his current job so she suggested getting a normal non stressful job(we are still trying to figure out what that looks like exactly). She ordered an MRI which we will get the results of on Friday. She also sent him to start getting physical therapy to work on his balance and gait. So even though he has not been officially diagnosed because we are waiting on the genetic test, at this point it would be very surprising if the test came back negative. We know that God could definitely give us a miracle and give us a surprising answer so that is what we are praying for but we know that He is in control no matter what the results are. At this point we are living our lives like he has it because even if it came back negative he obviously needs a change of pace so we can figure out what is going on with his health.
Because of him needing to switch jobs we have decided to move back to hometown to be near family. Both of us will need to work because he wont be able to have a high paying job. Thankfully having family near us will make that possible. We are excited and nervous to be moving and basically starting a new life full of unknowns. We really feel like God has orchestrated everything perfectly for this move so we are trusting that He has an amazing and perfect plan for us in Southern California. He already knows what jobs we will find and what church we will find our place in, and I can't wait for him to reveal that too us.
For all of you have been praying for us, thank you so much! We feel the peace and comfort from those prayers every moment. Please keep praying for Curty's health and clear answers regarding test results. Please pray that we would have wisdom about jobs to seek out. And pray that the kids will adjust well to so many new things.
We will be keeping you updated on our journey and will also be sharing facts about Huntington's disease so that you can all understand more about this disease.
Thanks for reading our first post!