Comments for Barbara's MJD Blog http://blog.stemcellschina.com/bjalmeida Getting Beike's Stem Cell Treatments at Qingdao Chengyang Hospital Sat, 18 Oct 2008 23:04:56 +0000 hourly 1 http://wordpress.org/?v=3.3.1 Comment on Thursday, October 16, 2008 by Brooke http://blog.stemcellschina.com/bjalmeida/2008/10/17/thursday-october-16-2008/comment-page-1/#comment-90 Brooke Sat, 18 Oct 2008 23:04:56 +0000 http://blog.stemcellschina.com/bjalmeida/?p=54#comment-90 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 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

]]> Comment on Thursday, October 16, 2008 by Christine Gray http://blog.stemcellschina.com/bjalmeida/2008/10/17/thursday-october-16-2008/comment-page-1/#comment-89 Christine Gray Fri, 17 Oct 2008 05:28:01 +0000 http://blog.stemcellschina.com/bjalmeida/?p=54#comment-89 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 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

]]> Comment on Monday, October 13, 2008 – 1 day left by Diane Etler http://blog.stemcellschina.com/bjalmeida/2008/10/13/monday-october-13-2008-1-day-left/comment-page-1/#comment-88 Diane Etler Wed, 15 Oct 2008 03:10:51 +0000 http://blog.stemcellschina.com/bjalmeida/?p=51#comment-88 Welcome home Barbara! Keep the faith and expectations high. Many good wishes and prayers have been with you and will continue to be so. Diane Etler Welcome home Barbara!
Keep the faith and expectations high.
Many good wishes and prayers have been with you and will continue to be so.
Diane Etler

]]> Comment on Monday, October 13, 2008 – 1 day left by Sheila Cole http://blog.stemcellschina.com/bjalmeida/2008/10/13/monday-october-13-2008-1-day-left/comment-page-1/#comment-87 Sheila Cole Tue, 14 Oct 2008 18:52:53 +0000 http://blog.stemcellschina.com/bjalmeida/?p=51#comment-87 BJ Thank you for sharing your journey with us. We are all thinking and praying for you. Safe travels. I look forward to seeing the new you when you get back. Best wishes always - Sheila, Dave, Matt and Kate Cole. BJ

Thank you for sharing your journey with us. We are all thinking and praying for you. Safe travels. I look forward to seeing the new you when you get back. Best wishes always – Sheila, Dave, Matt and Kate Cole.

]]> Comment on Monday, October 13, 2008 – 1 day left by Lesley Cahoon http://blog.stemcellschina.com/bjalmeida/2008/10/13/monday-october-13-2008-1-day-left/comment-page-1/#comment-86 Lesley Cahoon Tue, 14 Oct 2008 17:15:15 +0000 http://blog.stemcellschina.com/bjalmeida/?p=51#comment-86 Hi BJ - It's Tuesday and you are on your way home now and I understand your flight gets in at 8:30 tonight. WELCOME HOME! As to your previous blogs, first of all "nothing ventured, nothing gained", I really do think that you had to go and try the stem cell transplant and I think that it will take more time than you are allowing to see some more improvement. Keep your mind working with your body and have faith. Hope to see you soon. Love Lesley Hi BJ – It’s Tuesday and you are on your way home now and I understand your flight gets in at 8:30 tonight. WELCOME HOME!
As to your previous blogs, first of all “nothing ventured, nothing gained”, I really do think that you had to go and try the stem cell transplant and I think that it will take more time than you are allowing to see some more improvement. Keep your mind working with your body and have faith. Hope to see you soon. Love Lesley

]]> Comment on Monday, October 13, 2008 – 1 day left by Missy http://blog.stemcellschina.com/bjalmeida/2008/10/13/monday-october-13-2008-1-day-left/comment-page-1/#comment-85 Missy Tue, 14 Oct 2008 12:33:17 +0000 http://blog.stemcellschina.com/bjalmeida/?p=51#comment-85 OK, I'm back from camping and you are probably on a plane. Listen, Good things come to those who wait!!! Patience is a virtue and all that stuff. If any one can train those stem cells, it is you. So, whip them into shape. I hope you and Mary Jane had an uneventful trip home and will be settling in with family. I will talk to you soon, when my voice returns!! I have larangitis right now, so hopefully we will touch base some time next week!! I Love you!! Missy OK, I’m back from camping and you are probably on a plane. Listen, Good things come to those who wait!!! Patience is a virtue and all that stuff. If any one can train those stem cells, it is you. So, whip them into shape. I hope you and Mary Jane had an uneventful trip home and will be settling in with family. I will talk to you soon, when my voice returns!! I have larangitis right now, so hopefully we will touch base some time next week!!
I Love you!!
Missy

]]> Comment on Monday, October 13, 2008 – 1 day left by ruth http://blog.stemcellschina.com/bjalmeida/2008/10/13/monday-october-13-2008-1-day-left/comment-page-1/#comment-84 ruth Mon, 13 Oct 2008 20:46:49 +0000 http://blog.stemcellschina.com/bjalmeida/?p=51#comment-84 Patience honey it will come. You have been through a lot so let your body take it in along with your mind. You have been in a strange country with strange people away from family and friends. So In saying that your mind is tell you one thing and your body another. Give it the time needed. You build it, it will come. See you in a few days. Love you auntie Anyway your Mom is watching over both of you. And me to. Patience honey it will come. You have been through a lot so let your body take it in along with your mind. You have been in a strange country with strange people away from family and friends. So In saying that your mind is tell you one thing and your body another. Give it the time needed. You build it, it will come. See you in a few days. Love you auntie Anyway your Mom is watching over both of you. And me to.

]]> Comment on Monday, October 13, 2008 – 1 day left by C J Smith http://blog.stemcellschina.com/bjalmeida/2008/10/13/monday-october-13-2008-1-day-left/comment-page-1/#comment-83 C J Smith Mon, 13 Oct 2008 19:26:28 +0000 http://blog.stemcellschina.com/bjalmeida/?p=51#comment-83 Hi BJ I too don't like waiting for results, as a matter of fact, I don't believe I like to wait for most things. But I do, think in this case you will need to wait for some more positive results. I think you will get what you deserve, all good things come to those who wait. I should practice what I preach...right Have a safe and shall I say smooth trip home. Give my Mom a hug from me and one from my girls too and and since you are hugging her tell her one is from Ruby too. Tell her I have a bottle of wine, it's a German Resisling with her name on it for when we get together. With all the stories she has to tell, it might be a 2-bottle night. Again..... safe travels, you'll be home before you know it. Love Cindy XOXOXOX Hi BJ
I too don’t like waiting for results, as a matter of fact, I don’t believe I like to wait for most things. But I do, think in this case you will need to wait for some more positive results. I think you will get what you deserve, all good things come to those who wait. I should practice what I preach…right
Have a safe and shall I say smooth trip home. Give my Mom a hug from me and one from my girls too and and since you are hugging her tell her one is from Ruby too. Tell her I have a bottle of wine, it’s a German Resisling with her name on it for when we get together. With all the stories she has to tell, it might be a 2-bottle night. Again….. safe travels, you’ll be home before you know it. Love Cindy XOXOXOX

]]> Comment on Saturday, October 11, 2008 by Carol Russell http://blog.stemcellschina.com/bjalmeida/2008/10/11/saturday-october-11-2008/comment-page-1/#comment-82 Carol Russell Sun, 12 Oct 2008 02:00:09 +0000 http://blog.stemcellschina.com/bjalmeida/?p=46#comment-82 Hi BJ, Glad to hear things are going well and that you will be home soon. I have never blogged before and not sure if you will get this message. Take Care, Carol Russell Hi BJ,
Glad to hear things are going well and that you will be home soon. I have never blogged before and not sure if you will get this message.
Take Care,
Carol Russell

]]> Comment on Saturday, October 11, 2008 – p.m. by Lea Ann http://blog.stemcellschina.com/bjalmeida/2008/10/11/saturday-october-11-2008-pm/comment-page-1/#comment-81 Lea Ann Sat, 11 Oct 2008 18:00:08 +0000 http://blog.stemcellschina.com/bjalmeida/?p=49#comment-81 Hey, BJ - I finally found you! Last week I called to check with your honey to see how you have been making out. He told me about the website and blog - boy, I wish I had known about it sooner, so I could have been emailing you and keeping up with your treatments. I am sooooo proud of you BJ - you are such an amazing woman - honestly, I don't think I have ever met anyone as kind and strong as you are! So I know how much hard work you have put into making this (and I haven't even read your entire blog site) work. Please know that I am routing for you sweetie. Again, I am so sorry I couldn't be there for you. You know I would have been if I could (it was so difficult w my father's passing). Please email if you can - lab18a@yahoo.com - I will now read your blog - and it sounds as if you are leaving this upcoming week to come home. What is the follow-up plan? Hey, BJ – I finally found you! Last week I called to check with your honey to see how you have been making out. He told me about the website and blog – boy, I wish I had known about it sooner, so I could have been emailing you and keeping up with your treatments.
I am sooooo proud of you BJ – you are such an amazing woman – honestly, I don’t think I have ever met anyone as kind and strong as you are! So I know how much hard work you have put into making this (and I haven’t even read your entire blog site) work. Please know that I am routing for you sweetie. Again, I am so sorry I couldn’t be there for you. You know I would have been if I could (it was so difficult w my father’s passing). Please email if you can – lab18a@yahoo.com – I will now read your blog – and it sounds as if you are leaving this upcoming week to come home. What is the follow-up plan?

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