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.

http://wheniwalk.com/
This is a link to his blog, check out a few of them, it’s very interesting and they’re short.
http://wheniwalk.com/blog/?p=528

video of the day…Imagine.

3 Comments (+add yours?)

  1. Sharon Scott
    Aug 12, 2013 @ 22:44:39

    You will do awesome. Sending you healing hugs love and prayers. Wish I could do more, my friend. You will have a comforting quilt when you get back to comfort and encourage your healing. It was made with love and prayers and will give you my hugs when you wrap up in it. Love you ❤

    Reply

  2. Beth Coulson
    Aug 13, 2013 @ 17:15:45

    I can’t believe the time for you and your Depends to leave for such a beautiful city. And we just met . I have already been praying for you dail and reading your blog. I’ll keep up both and look forward to your returning with a new hop in your step. God’s speed, my friend

    Reply

  3. Tammi Williamson
    Aug 13, 2013 @ 22:04:24

    Will be following your progress in Russia and sending you strength, love and friendship from afar in Oz. You are my inspiration to keep fighting for my health to be returned so that I; like you can be the best wife and Mum I can.

    Reply

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