Thursday, October 16, 2008
October 17th, 2008
It was a long trip home , we got a complimentary upgrade from coach to Business Class (on United) from Bejing to Chicago, so it was an extremely comfortable (posh) long trip home. I wasn’t feeling too great when we left, so leaving was bittersweet. I didn’t want to leave feeling as dizzy & off balance as I was. I felt like I really let Deena down, I mean she went into this with all my talk & research of great things happening, and here we were leaving after 25 days with little improvement. I’ve been home for two days now, I still get really tired at like 2:30 – 3:00 p.m., and usually take a 1-2 hour nap.
okay, okay I feel really good. My balance is getting better, I actually visited and did a few errands today withOUT my walker. It wasn’t pretty, but I was solo. I start PT on Monday…I can’t wait. I made an observation on my walking that I’m hoping I can learn to correct…my hips round out with my steps, in other words my steps come from the side, instead of from underneath my torso. My speech has improved greatly, my handwriting is now legible, I can still squat ! Look out – Here I come- FAILURE IS NOT AN OPTION. Can’t knock me down! I’ll update blog 1/week for a little while. Stay tuned….
Entry Filed under: mjd,Uncategorized
2 Comments Add your own
1. Christine Gray | October 17th, 2008 at 1:28 pm
Hi Barbara,
Your blog has been a wonderful read! I’m a stem cell recipient (Christine’ s Ataxia Blog-on this site) and I’ve been home for 21 months now. Bravo…you’ve made an amazing journey. I know what it’s like to have all these questions going ’round in your head, “what am I doing here..this is SO different? Will it help? For how long? why I am feeling so good today but not yesterday?” Yeah, I know what it’s like and it’s only after being home awhile that I’m sorting it out. Yes, the stem cells grow so it can take quite awhile before you see any significant changes….and they can be subtle too. One of my Chinese neurologists said that some patients don’t experience significant change for 6 months. After1 year I started to be able to stand & sit with ease, although I still have good & lousy days. My initial surge of improvements has stabalized now but I still notice small improvements in my balance. I am now pursuing TCM and accupuncture so this is helping me maintain my abilities that I have regained from my treatment. The exercises you learned are SO important to continue because they encourage the new cells to grow, retrain the body/brain in movement and stimulate neural pathways that have fallen into disuse.
I’ve learned that it takes very little special equipment for any of this to happen so the “basic” stuff you might have found at the hospital is o.k.. It’s true, China is so culturally different it can be weird to be having a medical treatment a world away from your home AND coping with being surrounded by things that might be nothing like what you expected (I was at Nanshan hospital near Hong Kong-a state of the art hospital-sadly, no longer used by Beike). The good part is that NO ONE has the knowledge ,expertise, or skills with stem cells like the Chinese doctors do. I’ve really learned a lot about this since I’ve been home. Contrary to the confusing information we get filtred through our N.A. media (I’m Canadian) amazing breakthroughs are happening in China-it is sound science not “experimental” or “risky”…
The best part is the amazing community of people I’ve been priveleged to “meet” who are world wide and dealing with the same issues we are. It’s wonderful to be in touch with a group of positive, realistic people swapping thoughts/ideas/experiences-quite different from some of the negative experiences we sometimes get here.
Progress depends on the individual, their age, diagnosis(ie. mine is not genetic), stage of condition ,medical constitution, even attitude. To my knowledge, none of us have ever “run to the plane”,maybe we all wish for that though! While I was in China, George Arruda (he has an experience & blog) was also there with MJD-he arrived using a wheelchair & left using a cane…Rachel Lane (has a blog) , with Frederich’s Ataxia straightened out her gait, learned to catch a ball, go back to using her manual toothbrush. I climbed the steps without using a railing-we were all thrilled at these changes, big & small. The Chinese never talked about what we “couldn’t” do, only what we “could” do & learn.
It will take time, don’t give up hope (you’ll get frustrated sometimes though) At least there is some hope for positive change, a choice we’re not given here. Please be in touch, if you like, at any time. You might have thoughts or questions or even just want to vent! We aren’t sent home with a “stem cell hand book” (wouldn’t that be great?) so we have to “write”it ourselves & rely , often, on each other. Get some well needed rest & welcome back home…
Best Wishes,
Christine Gray
2. Brooke | October 19th, 2008 at 7:04 am
Barb, it is Kris. Brooke’s mother from China. Glad to hear you are home and doing well. That is great you got upgraded to business class, let me know how so we can too, hehehehehehe. Well email me, Brooke is calling have to go. Miss you
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