It is difficult to give updates on someone who lives about 600 mi away from you. I see Nico quite often though, thanks to modern technology and FaceTime.
It was nice to have him living with us for a while. He moved away right after he finished high school and came only for short visits throughout the year. I'm still cooking too much food most of the time, but I'm getting slowly back to my "normal" life. I spend lots of time on my computer, learning new programs and trying to remember how to edit a video or organize all those pictures I'm taking every day.
But the best part for me is, that I don't worry constantly about him anymore.
Here Is Nico's Take
So it's been about 8 months now since the transplant and lots has happened since
then. About 31/2 months ago I moved back to Truckee where I lived up until I had
to move in with my parents because MS attack left me so bad I could not take
care of myself.
This was about 7 months before I got HSCT treatment, and I
started recovery there.too. All together I was gone from my home in Truckee for
about 1 year.
There have been lots of ups and downs, but all in all improvements
continue. For example stiffness in my legs, spasticity, and visual disturbance has
fluctuated to the point where I felt like things are back to the way they used
to be pre-treatment. But no matter how bad things seem during these temporary
downs I always bounce back and continue to improve !
I walked .45 miles using my walker the other day, and my legs actually bend at the knees as I take steps.
Heat sensitively remains almost non existent, except during those downs.
My digestion (bowl movements) also remain normal since the transplant, and so
does urinating. I don't experience fatigue much anymore.
All in all feel like I now live free of MS :).
Followup On Nico's 6 Month Checkup
We did get at last the result of his MRI: No new lesions have developed since the most recent MRI, which is dated July 1, 2014, and there are no enhancing lesions on the current study to suggest active demyelination. Also, some of the existing lesions have decreased in size.
What Else Is Going ON
A week ago, Nico became a US citizen. He had to travel to Sacramento for his interview. That would not be a problem for most of us, but he can't drive a car anymore and public transportation from Truckee to Sacramento is limited. But thankfully, one of his friends ( thank you so much, Matt!) was willing to drive him. Here is a picture of his new document.
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| His sister Jana became a US citizen too |
He invented a new mobility device: the mobility skateboard
He was able to walk unassisted outside the house
He worked on his off-road race car
My Conclusion
Despite the fact that his disabilities are all still there, sometimes affecting his life more than at other times, he seems to be really happy.
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