Thursday, February 16, 2017

I have started the new drug called Ampyra. It may takes months to see if it works to help me or not. I'm on a 60 day trial and then hoping I can afford it if it helps.

I only have 1 more infusion left in 2 months at the Sheperd Center in Atlanta and then I will be done with HSCT.  My B cells are still at zero. Not sure how long it will take them to come back after my last infusion. At least 3 months after that. I'm guess that bill because of new insurance will be about $3000 or more...just got to wait and see.

I'm now on a new sleeping pill that helps me sleep a lot better. I was having a big issue with falling asleep and staying asleep.

I still have my good and bad days. More good than I use to. I can still over do myself and heat hurts me. I'm still giving this all that I have and have hope still.

Money is tight not working but we some how make it work.

Tuesday, September 6, 2016

Physical Therapy

Here is another angel of mine. She is Anneke Bender, MPT at Shepard Center in Atlanta. She has helped me a lot with my physical therapy. You would be shocked at how much I have learn in a short amount of time. Some of the things that we are doing to help me walk are, wedges in my shoes to make me not walk on the inside of my feet. I also got new shoes that are tight on my feet. My walker was given to me and I think a short person had it before me. I will have to get one that is meant for tall people. Im being train on how you are expose to walk also. I have certain muscles that we are trying to build up to help me walk for more than 15 mins. I'm testing out the Bioness L300 Unit for my right drop foot with the hope that I get a grant that will pay for the $8000 device. Today we went over Stretching. It is a lot harder than it looks but will help me walk more. WIth HSCT my goal was to stop my progression and never get any worse. But I'm a fighter and I want to be able to walk for more than 15 mins. I know nothing is impossible and I keep going a little bit further and pushing myself. I have came a long way and while Im all the way over here, I think I will try to improve more. Daisy made me promise to walk her down the isle when she got married and maybe even a dance with her. She is a knock out and getting older on me and Im not sure how much longer I have to meet this goal. But I'm going to do it. Matter of fact, I'm going to walk 1 time around the whole track at the Griffin Airport track one day also and sooner the better. I'm going to keep doing my part and see what happens. Every little thing I gain back is a victory. Praise GOD and the 1000's of people that cared about me and helped me.

Mark Rosenthal

Tuesday, August 23, 2016

Physical Therapy Evaluation

I went to the Shepard Center today to have a physical therapy evaluation for my ms. First, I love that place. They care about people there. They got to study me and see what things I can improve on with pt. I do have right drop foot and will be testing out a bioness unit. I also have weak ankles. I walk on the inside of my feet so to speak also. One of my goals is to keep walking some and maybe improve it. They also said my walker is not tall enough and the one I have it for a short person. I'm going to do whatever I can to get better.

Wednesday, August 10, 2016

Tuesday, August 2, 2016

I had an infusion done today and update on how I'm doing.

Today I had my first post hsct infusions done today at the Shepard Center in Atlanta. Let me tell you what I need them.

Rituximab follow up infusions are "suggested" by Mexico, but not mandatory. From a prior post. . . . Regarding the post-HSCT Rituximab infusions offered by Clinica Ruiz that I will add some relevant info. First the rationale. . . . it has been discovered in the clinical trial work (mainly out of Dr. Burt's outcomes in Chicago) that a fraction of MS patients undergoing non-myeloablative HSCT appear to relapse at some point following the transplantation. Dr. Burt's approach is to retreat such relapsed individuals by administering six additional doses of outpatient cyclophosphamide, although other lymphoablative agents (such as Rituximab) are also likely to be effective. The difference with Dr. Ruiz is that his philosophy is to be proactive instead of reactive and suggests additional post-HSCT infusions as maintenance therapy, or a "booster" if you wish to attempt prevention of failure *before* a possible failure in the minority of patients in which it might otherwise occur. However, clearly not everyone will need it, but it's impossible to predict beforehand who *will* need it so Dr. Ruiz just suggests it for everyone. And the dosing (100mg) of post-HSCT Rituximab (on top of the single high dose of Rituximab administered as part of the transplant) is a gentler approach compared to more cyclophosphamide (which is very harsh) so that the patient will have few, or no side effects with the Rituximab retreatments. This is why he suggests the Rituximab, although it is not mandatory nor does skipping the infusions lessen the effectiveness of the transplant as an isolated treatment in comparison to any other HSCT facility.

Let me update you on how I'm doing. I was warn about the roller coaster after HSCT. The goal of HSCT is to never get any worse and I have not. As of now the progression has stop. Everything else that I get is a bonus.  My brain fog is a lot better. Using the bathroom has greatly improved and I can tolerate the heat much better now.  I can still only walk for about 15 mins at a time. I still fall down sometimes due to my right drop foot. Im still fighting my ms, but I now more time and the progression is stopped.  My hair is slowly coming back. I'm sleeping a lot more than ever. I fell like a new born baby. It can take years to see any improvements if any at all. 

I dont give up and I'm going to give this everything that I have. My goal has been reached. I dont see me in that wheelchair anytime soon and still hoping for improvement in my walking. None of this is easy, but GOD knows I can handle it. 

I have also started to help others that have MS learn more about hsct. 

Mark Rosenthal 

Sunday, May 22, 2016

Im back home and was welcomed by these amazing people.

I've made it back home and was welcomed by these amazing people. I'm so happy to be back home. This felt so good!

Thursday, May 19, 2016

Rise UP and Seize the Day! Rise Up and Seize the day. I woke up very early this morning and had my talk with GOD and he wanted me to share this with you. Some of you need to hear this message. I know it is very long, but I had a lot to say. Please watch it. Feel free to share it.