Wednesday, November 4, 2009

Ron has been cleared to return to work!

Ron had his monthly doc visit Tuesday and she cleared him to return to work! He has an appointment with his company doctor Wednesday to confirm he can go back. He is so excited!! This was the news we were hoping for! We celebrated by spending the day with my sister and our nephew. Finally some positive change for a little while!

Sunday, November 1, 2009

Quick Update

We had a pretty good Halloween. The only trick or treater we had was our niece Aberlie but that was a wonderful surprise. We have an appointment Tuesday with the Rheumy. Ron is hoping to be released to go back to work next week. He is feeling much better and has done very well on his taper. I will post again after the appointment. Thank y'all so much for all the continued support!!

Thursday, October 15, 2009

Guess I should update

I did not realize I have not updated in so long. We went to the Cleveland Clinic in July. We saw a rheumatologist and a neurologist. They agreed with the diagnosis of Primary Central Nervous System Vasculitus. They told us that the treatment plan should be to do a very slow steroid taper, which we are doing at 2.5mgs at a time for now. He is down to 15 from a discharge dose of 40mg with no new strokes, so that is promising. We will taper down to 12.5mg next week. He is still on 150mg of Cytoxan. Once he gets down to 10mg of prednisone and remains stable for a month, he will be switching from Cytoxan to a milder and more tolerable chemo, Imuran. He will be on prednisone and Imuran for the rest of his life as long as he doesn't show any signs of new strokes. If he is no longer stable then the steroids go back up and back on the harsh chemo again. His local doctor thinks he should be ready to go back to work in January. He is very excited about that possibilty. Right now we are trying to keep all forms of the flu away from Ron. his doctor has advised to avoid crowded places at all cost and of course avoid known sick folks. She also advised he should wear a mask if he had to venture out in public, since even the regular flu would put him in the hospital. The doctor changed his anti depressant which seems to have helped the wild mood swings but we have been instructed to just accept this personality as close to the old Ron as we will ever get due to the multiple strokes on his frontal lobe. Each day we are just thankful to have another one, even the ones we take for granted. Thank you for reading and thank you everyone for all of your positive thoughts!

Monday, June 29, 2009

Am I a horrible person?

That i want a normal day. I want a day without worrying about paying the bills or getting medications. A day with no side effects from multiple strokes or from medication. Am I a horrible person because there are days I would do almost ANYTHING to have our life back? To have the man I married, my best friend back? Most people do not understand what it is like to be us. Ron looks healthy so people just assume he is fine..all better, right? Well, those people don't see him stumble walking to the kitchen or be unable to pick up something due to his lack of coordination in his hands. They don't watch the little changes each day in a man they knew better than themselves. They haven't seen him deteriorate as his brain is being killed little by little by these strokes. The official count as it stands now is 23. They will never have an accurate count due to the small size of several of them. We will most likely never know what caused this. He will never be cured because their is none. This disease will kill him, its just a matter of time and the quality of life he will have. How shitty is that? We will be 30 this year...thats all..30...and Ron may never get to be a fireman again. I will continue to be more his nurse and less his wife. So am i a horrible person because i don't want this life? I don't think I am. I look back at the beginning of this roller coaster to hell, and I think damn..I am pretty bad ass. I have gone above and beyond my duties as a wife, but not because i have to...because I vowed thru sickness and health and I meant it. I can definitely sympathize with spouses who have left because of this disease. There is so much that the doctor's just don't understand. how can you expect a layperson? One of the hardest things for me are the mood swings. Ron has no filter to his attitude, so in around these parts isn't always pleasant. The toughest part is, he doesn't even realize he is doing it. We have both lived in this bubble of denial. I have come to grips with this more than he has. We have decent days and really bad ones, not really much in between. I don't take care of myself like I should. I can admit that, but i just don't always have the time to care about myself.

I am very thankful for my friends. The people who actually try to understand what it is like to live this life. The true friends who try to make me laugh and who love me for who I am. And the friends who treat Ron like a person...a real one..not a disease or a freak. The friends who get the weird little quirks of mine..and love me more because of them. I have always been a pretty solitary person, too afraid of getting hurt to let people in. However, recently i have realized that i need people who love me in my life to help me on the days i am not quite strong enough or can't quite manage.

I am reading the blog Ii wrote when Ron got sick. It brings back so much. i can still feel every emotion and fear i was feeling when i wrote those words. I have learned to use blogging or whatever has a type of therapy. A way to express things that i am not always comfortable expressing. So thank you to any one who takes the time to read my ramblings.

Thursday, June 11, 2009

Update on Fundraiser

The date has been confirmed for June 27th. A bank account has been set up at American National Bank of Texas under Carmen Dixon for Ron Hopson. A paypal account has also been added Email either me or Holly if you have items to donate. Please forward this information on to anyone you think might be interested in helping in anyway. We are working on a place to store everything.

Thank y'all so much for the continued love and support!!!

Thursday, June 4, 2009

Info on the fundraiser for Ron

My Hometown Hero
by: Holly S. Corbin

Growing up in a small town, the same town my parents graduated High School from, gives me a particular advantage over others. You see, I created friendships with people that I still hold to this day. I also have the unique ability to call upon my hometown when my friends are in trouble. My story is about the horrible disease that is slowly consuming the husband of a dear friend.

In July of 2007, Ron Hopson began a horrific journey, a journey that most of us pray we will never fall victim to. After suffering flu-like symptoms, Ron complained of a persistent headache that continued to intensify until he could no longer withstand the pain. Several tests later, he was diagnosed with Meningitis and was put on medication. The problem should have stopped there, but unfortunately for Ron and Amanda Hopson, this was only the beginning of a difficult new life.

Ron has an incurable disease called Central Nervous System Vasculitis (CNSV), which means inflammation of the central nervous system, affecting the blood vessels in the brain or spinal cord. What was at first thought to be Meningitis was in fact something much more detrimental. For details, please visit the website at This debilitating disease has caused Ron to suffer numerous strokes, thus affecting his ability to function as he previously did. Throughout the entire ordeal, his wife, Amanda has been so strong and has created a blog ( to share with friends and family. This blog also serves as a sort of therapeutic outlet for her.

Ron served as a fireman at the Cash Fire Department for 5 years. From there, Ron began to volunteer his services in Crash Rescue at L3 Communications. He continued to volunteer for six years before becoming a Fireman with them in 2003. Amanda worked in dispatch for several years, until they both could no longer work due to the disease. Ron needs round the clock assistance and monitoring, so Amanda has given up her job in order to take care of her husband. As I’m sure you can guess, this has created a major strain on their finances, sometimes making it necessary to choose between getting Ron’s medicine or buying groceries. Through all of this, Mandy has been a rock, when she feels like crumbling. In her blog she wrote something that touched me deeply; “Ron is my world and my best friend. My brain never allowed the thoughts of him not coming home to process, which I suppose is a good thing. It is so difficult to see my big strong man so sick and in so much pain.”

I sit here crying, while trying to type this letter, because I love my dear friend “Mandy,” and want to help her in any way I can. Since I know that I can’t take it all away, some friends and I are putting together a fundraiser/donation to help pay for their upcoming trip to Cleveland Ohio to see a specialist. The Cleveland Clinic will, with all hopes, give the Hopson’s a chance to face this disease from a new perspective and give Ron a better chance to manage this disease.

The appointment is on July 16th, and we are asking that anyone who is interested in making a donation please do so at any American National Bank under the Ron Hopson CNSV fund. We will keep updates coming on a fundraiser event, so please feel free to contact me via email at or visit my Facebook account under Holly Morgan Corbin. I will keep any updates posted for you. All donations will go towards the costs of traveling to Ohio and back, medical bills, and the overwhelming costs of prescription therapy.

**So far, we have set a date of Saturday, June 27th at the Cash Fire Department for a community yard sale. There will be several items (donations are welcome) to buy, our “boys” with donation boots, and some good food. We hope to start the festivities around 10 a.m., so check with me ( to get more details.***

Wednesday, June 3, 2009

June 2,2009

Ron had a routine appointment with his Rheumotologist today. She is sending us to the Cleveland Clinic on July 16th to meet with the specialists on this disease. Ron is doing better however he is not rebounding from the most recent strokes as quickly as before. He still requires quite a bit of assistance and monitoring. It is very difficult to watch him struggle so much. Not really much else to report at this moment. I am pretty overwhelmed. My friends are putting together some fundraising activities so I will pass the details on to everyone when I get them. Thank y'all again for all of the support!

Friday, April 17, 2009

04/15/09 Follow up visit

Ron had his follow up visit post hospital stay on Wednesday. Ron is battling bronchitis so she prescribed an antibiotic and nebulizer. They both seem to be helping tremendously. The appointment was pretty routine. We are doing a slow taper of his steroids back down to probably 20mgs. The most notable part is that his doctor wants us to go visit the Cleveland Clinic. The experts on this condition are located there. There has been a doctor with the clinic consulting on his case since the beginning however his doctor thinks it is time to actually go. We aren't sure when, but probably in May sometime. His coordination and speech are almost back completely to normal, however some of the residual balance issues can be attributed to the fluid in his ears from the cold. We go back in 3 weeks for another follow up. I will keep you posted. Thank you all again for the positive thoughts!

Thursday, April 2, 2009

Update on Ron

Ron was released from the hospital on March 27th after spending 6 days in the hospital. They did 5 days of high dose IV steroids and put him back on the oral chemo. He has a small amout of coordination issue on his left side but that is improving daily as is his speech. We won't know for another week or two the extent of any long term effects from the newest strokes. I am already noticing some new changes in his personality however I am sure a lot of that can be attributed to the higher dose oral steroids. I will update again after his follow up visit with his doctor. Thank y'all again for all the positive thoughts and encouragement!

Monday, March 23, 2009

March 23,2009

Ron is back in the hospital. His symptoms started on Friday the 20th. He fell a couple times and was a little confused. He had to wake up early for work on Saturday and he fell a few times getting ready for work. There were a few other symptoms and Ron left work early. When he got home I asked him if he thought it was time to go to the ER and he agreed. We got to the ER and they immediately started with blood work and withing half an hour they were taking him back for a CT scan. The doctor came in a short while later and said that there were new stroke lesions on his brain and he was going to be admitted. He was finally put into a room early Sunday morning. He also had an MRI done on Saturday. The MRI confirmed 5 new strokes and a very high level of inflammation in the brain. The inflammation number should be 5 or less. His is 45. They started high dose IV steroids and chemo. This was all triggered by the tapering of his steroids. Obviously he is going to be on it longer. He was already showing improvement withing a few hours of the steroids. They are doing an angiogram Monday morning. He will be in the hospital until at least Wednesday. Thank you again for all of you love and positive thoughts. I never would have made it thru this battle with you ya'll! I will keep you posted!