Tuesday, October 8

Hi everyone!

This past weekend, Tyson had his second epidural catheter procedure. This time, the catheter stayed in for 2 days. He had an incredible amount of stem cells administered through the catheter and as a result was exhausted and in bed for much of the weekend. So by Monday morning, he felt very well rested and ready for physio.

He’s still standing with much more ease each day and the fact that he can shift his weight and pull his leg through is a great accomplishment because he’s now doing his with his American braces which allow him more freedom to move (vs. his Indian braces that attached the waist piece to the leg pieces) which results in him engaging his core a lot more. This is the learning curve I talked about a while back.

Dr. Shroff spent a good portion of the morning session downstairs in the physio room watching all of the patients and cheering them on. One man, who was a quadriplegic when he first began treatment here at NuTech was now standing for the first time without leg braces while holding onto a walker with his therapist by his side. Dr. Shroff just about shrieked with excitement as we all watched in amazement. It was truly unbelievable. She stopped him for a moment to guide him on the proper way to use a walker since the notion was rather new to him. Then we watched another patient, also from India who is learning to walk again. It’s very encouraging and moving to witness all of this. This patient’s wife accompanies him to every therapy session and sits by his side through it all, just like me. We always smile at each other; we share something very special in common. Her husband noticed when Tyson switched from his joystick and motorized wheels to his manual wheels and said to him, “looking good! I see you’re getting better. Keep at it!” I love it all! Such a great atmosphere here. It’s important for me to share the human element of this experience. This journey is not all about the science of stem cells or how Lyme disease works…much of our journey is about our strength and determination and the friendships we make along the way. As I mentioned earlier, we meet people from all over the world and these are things we all share.

So speaking of his wheelchair, he is now able to propel himself backwards AND turn himself…both of which he was unable to do a week ago. Additionally, Tyson and I both noticed added bulk in his chest, neck, and shoulders. We shared these updates with Dr. Shroff and she said that she is “thrilled with his progress” and that we haven’t seen anything yet!! Such a long road ahead, but we’re going in the right direction.

I’ve had a lot of friends tell me that Tyson’s story has helped educate them about Lyme disease. We are very passionate about sharing our experience and what we’ve learned along the way in hopes that situations like ours can hopefully be prevented in the future. I do a lot of reading and research about Lyme disease and want to share a few websites, articles, etc. that have been invaluable to us.

First of all, there are two wonderfully informative websites from which you can learn a lot about the disease, it’s prevention, help for diagnosing and treatment.

http://www.ilads.org
wwd.lymeresearchalliance.org

Secondly, this is a link for a really great, eye-opening article about Lyme disease and how it disguises itself…

http://m.huffpost.com/us/entry/3697817

And finally, an amazing documentary called “Under Our Skin”, which a friend introduced us to late last summer because he was convinced Tyson had Lyme. We had vehemently told him “no, he’s been tested several times, he doesn’t have it…” But as we watched it, our curiosity grew; Tyson resembled a couple of the patients in the documentary.

We didn’t know what Lyme was last year and perhaps if we were armed with the knowledge we have about it now, things may be different. Regardless, this is our journey. ❤

Please reach out to me if we can help any of you.

Be in touch soon!

Love,
Ann & Tyson

One thought on “Tuesday, October 8

  1. Ann can you forward thisto our patty as her sister in law was told this summer she has lyme also I will try to do itbut I am not very knowledgeable

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