The Honeymoon

Note: this entry was originally composed for email, 11/11/15 

It's been a week since Dave's procedure, so I thought it time for an update.

First of all, the procedure went very smoothly with no complications. He did opt to take the anti-anxiety meds, so he was fairly spaced out the rest of the day, but no harm to that. The next day the anesthesia had worn off of his abdomen, so that soreness came to the forefront. But that was mostly just discomfort.

We saw our physical therapist on Friday (Day 2 post procedure) -- and we finally broke down and asked her whether it was too soon for us to be observing changes since the procedure. She said that no, her husband and her son had both seen some changes immediately. So I asked Dave if he thought he was more able to lift his toes while walking, because a number of times it had seemed to me that he had been able to walk stronger, with quicker and longer steps. He agreed that he had noticed the same things. We were incredulous, given it was just two days later. But Caroline's main message was that as he notices changes - he needs to keep doing those movements to help the brain learn to retrain those neural pathways. So if he's able to walk - then walk more and try to walk correctly. She said to expect those walks to tire him out quickly, because those muscles are so weak for not having been used for so long.

That night at home Dave did something really astonishing - kneeling down on the floor, and standing up again without leaning on anything. He hasn't been able to do that for... years! (in fact as my sister pointed out, I'm not sure I can do that either) I was close to sending an update right then - but held off thinking it was too soon.

And I'm glad I did, because those improvements essentially disappeared on Saturday. Over the weekend we didn't do a lot. His stomach was still sore and very tender to the touch. But he continued to have moments when we could just tell his walking was stronger, but then moments when it seems nothing has changed. He certainly has never been able to get up off of his knees unaided again. 

Tuesday we had a followup with the Stem Cell doctor. He was fascinated to hear about his 2 day period of dramatic changes. He said that essentially exactly matches the experience that the majority of his joint-pain patients experience - a 1-2 day "honeymoon" period of immediate improvement that then fades. He's never treated MS before, so he was very interested that Dave had his own. He has no explanation for the honeymoon phase, because nothing physically can have taken effect yet. In reality, he said stem cell changes take weeks and months - so we are not to be discouraged by waning progress, and that it isn't likely to be a linear process either.

So - we will continue waiting and watching. And walking. Monday he walked to the end of our block and up the 4 stairs at the end - with little help from his walking sticks. He was wiped out by doing it, but it's something he couldn't have done a 8 days ago. It'll be another 3 weeks before Caroline will re-run the battery of measurements she took from Dave prior to treatment. We'll let you know how that goes!