When I walk…

I leave day after tomorrow, Wednesday, for Moscow and the HSCT that will stop my PPMS and save my life. I’ve been thinking about this a lot recently, do you all really know what I’m going through? Do you know what it looks like when I walk? People see me and always say, “you look great!”, well, I do, and I feel good too. I don’t look sick, I don’t feel sick, you’d never know anything was wrong with me until you see me walk. I lay in bed most mornings for a while before I get up, just because at that moment I feel normal, nothing is wrong. I usually read e-mails, facebook post and news on my iPhone before getting up. I cherish those few moments that my body doesn’t show me it’s sick.

We went on our normal Sunday morning bike ride, down on the trails along the Arkansas river, I love to ride, always have. Today it’s one of the things I can do that you’d not know anything was wrong, I feel free, until I have to go up a hill or you see me try and get off my bike and try not to fall. I can still ride, 6.5 miles, but I pay the price the rest of the day and some of the following day. My legs are very weak, no matter how hard I push them. I have to think about what I’m going to need to do that day, to see if I can exercise or ride my bike. I knew on Saturday I shouldn’t ride, since my family was coming over for dinner, I needed my leg strength to make it through the evening.

Riding bikes up to a castle in France.  I want to be able to do that again.

Riding bikes up to a castle in France. I want to be able to do that again.

I know this post is not my typical upbeat post, but you need to know the truth and know what is happening to me. This disease will take away everything, it’s slowing paralyzing me, from the legs up. I also have some weakness in my hands, bladder urgency, fatigue, and some cognitive issues. It’s slowly taking away my life. So as extreme as it may seem to go to Moscow for HSCT, it’s not to me. It’s giving me a chance to stop this beast in it’s track. I don’t know if I’ll get anything back that I’ve lost, but it’s not totally off the table. I always have HOPE.

So, I thank everyone that has supported me to get this far, we’ve raised a lot of money to help with my medical expenses and the cost of the trip. I will have additional expenses when I return, including MRI’s which cost $2000 a pop, or more if they do multiple views. Also, physical therapy to help gain strength after being the hospital for 5 weeks. So, I will use everything to help me get better. If I have more than I need, I will be donating it to others seeking this treatment. And I will pay it forward by spreading the word about HSCT, and helping others get this life saving treatment.

I want to share with you some videos from Jason Dasilva, he too has Primary Progressive Multiple Sclerosis, and has made a short film that was presented at Sundance Film Festival.

This is a link to his blog, check out a few of them, it’s very interesting and they’re short.

video of the day…Imagine.