Hello again,
A couple of things I forgot to mention but meant to… A few months ago I mentioned that I was beginning a course of treatment using TCM. Well, I’m continuing with this approach. Following the principles of Chinese medicine, I see a local Doctor of TCM , once a week, he gives me a new supply of personally blended medicine (packets of granulated roots, herbs, etc…I mix up with hot water as a tea), talks with me, checks my pulse to see what my energy is doing….I drink the tea 3/week as opposed to only the 2 months of the Japanese study I mentioned. My symptoms have not disappeared but, along with exercise, relaxation techniques and some supplements, this Chinese medicinal treatment has helped me to maintain my good health & the improvements I initially received from the stem cells. I believe, the TCM has helped improve my energy, balance, muscle co-ordination, speech and over all sense of health & well-being. I won’t go into it here, but I have a very good definition/description of traditional Chinese medicine if anyone’s interested in knowing more about it.
Also, quite a long time ago, I started a “Stem Cell Recepient” group on Facebook. So far I’m the only member! It’d be great to get some others members too! If you have a Facebook profile, check it out….
Cheers,
Christine
August 15th, 2008
“Disabled”,”afflicted”, “suffering from “, “fighting”, “battling with”, handicapped”, sick” “illness”, “disease”…these are all words banished from my vocabulary. Someone once asked me, “what’s it like since you’ve got sick?” Another article described ataxia “sufferers” as”battling against” a “cruel disease”…I tell you, after reading the article I felt terrible, before reading it I felt pretty good! Whenever I get a sickness question I always end up looking over my shoulder to see who the speaker is talking about. I don’t know about you, but I don’t want to battle with or fight anything . Fighting implies a winner and a loser and, sometimes, life’s not about that. Corny as it sounds, I’ve tried to make peace with my particular medical condition (sporadic SCA2), I’m far more relaxed about what I can and can’t do and work, in a more relaxed way, with my abilities. My days are still full of big & small frustrations ,but not approaching myself in a negative way sure has made a big difference for me. Language is a very powerful thing and using the words I’ve mentioned above t0 describe anyone’s medical condition can be extremely insensitive. I’m sure the people who wrote the words & said them didn’t mean to be unkind but, actually, after hearing them a lot, I started to feel pretty awful. Pretty soon I started to feel “disabled”, “sick”, and “hopeless”-a self-fullfilling prophecy. Pretty negative thinking, I know, but people challenged by all sorts of health issues are faced with them everyday. I think most of us are keenly aware of our medical conditions, wouldn’t it be more constructive to hear something a bit positive? I mean….come on!
Positive attitudes didn’t begin in earnest, for me, until I received my stem cell treatment in China ( I’ve been home for 18 months…wow, does that make me an “old timer”?). Never once, by anyone there, was my health put in a negative light. Everyone knew (including myself) what I couldn’t do, concern was only shown over what I was able to do and could learn to do. Any positive attitudes I have now, I started learning then. I refuse to think otherwise…I find negative thinking a waste of time & a detriment to progress. Yes, it’s hard work sometimes but weeding out the negativity in my life and focusing on nurturing the positive has made a big difference for me.
For some reason I haven’t been receiving my blog comment e-mails for a couple of months, I’ve caught up with them but I apologize to anyone for my “lateness”. It’s very important to me to hear from anyone reading-don’t hesitate to get in touch. Hopefully, I’ve rectified the communication problem. Also, here’s a new website to take a look at, if you like: http://www.stemcellsforhope.org
This was started up by a former Beike patient. It’s worth a look…
Anyone who’s read my blog knows that I’m always talking about doing my exercises. Well, yes, I’m still doing them, essentially the same physiotherapy moves I learned in China. They’ve been a huge benefit to me and I intend to keep on doing them. I’ve also added a bit of gentle yoga & ti chi. I still experience an “ebb & flow” in my abilities but Istill retain all the improvements I gained from my stem cell treatment . Also, I don’t know this for sure, but my SCA is “sporadic”- not genetic ,so I wonder if my treatment could have altered the progress of cell deterioration…
Well, enough for now. On the personal side, we are having a wonderful, warm & sunny summer in Vancouver and, of course, we’re watching the summer Olympics unfold in Beijing-good luck to ALL the athletes…I also helped my parents celebrate their 50th wedding anniversary and my son’s 16th birthday…wow…it’s been busy. Wishing you all a good season, keep in touch, take good care…
Best Wishes, Christine
A man is but the product of his thoughts what he thinks, he becomes.
Mohandas Gandhi
August 13th, 2008
The History of Medicine
2000 BC “Here , eat this root”
1000 BC ” That root is heathen, Here, say this prayer”
1805 AD “That prayer is superstition. Here, drink this potion”
1940 AD ” That potion is snake oil, Here, swallow this pill”
1985 AD ” That pill is ineffective. Here, take this antibiotic”
2000 AD “That antibiotic doesn’t work anymore. Here eat this root…”
- unknown-
Wow…I’ve included this anonymous statement on medicine in my blog because I think it illustrates perfectly some of the conflicting advice we can encounter trying to improve our health and well-being . Since coming back from China after my stem cell treatment in January ‘07, I’ve tried to maintain my health and abilities and keep up to date on new research & treatments for, not only my condition (spinocerebellar ataxia) but other conditions as well. Medicine’s so interesting because many issues are intertwined. New discoveries in one area can help shed light on another. One thing my time in China taught me was to not accept any medical advice or opinion at face value. Sure it’s good to listen to the facts, learn what you can and make mental notes, but I’ve also learned that advice can be very subjective . There’s a lot of information out there about what I should be doing ( or not doing ) for my SCA, much of it conflicting. If I’d taken all of it to heart, I certainly never would have gone to China. It was the best thing I ever did. Although stem cells are not a “cure” (there isn’t one , at present), even many doctors in the west will agree that they is hope for treating many neurological conditions, spinal cord injuries, etc… with stem cells. Many conditions are easily dealt with using conventional medicine. It would be great if I could go to my doctor and, reaching for his prescription pad he said, “spinocerebellar ataxia? Sure, I’ve got just the thing to clear that up! Take these and come and see me again in a month” Dream on…
But, I stumbled on a study done in Japan posted last June, discussing treatment for SCA 6 using traditional Chinese medicine:
http://www.ingentaconnect.com/content/bsc/ggi/2007/00000007/00000002/art00017
In summary, with a Doctor of TCM near my home, I’ve been following this treatment , with a few modifications because I’m dealing with some other health issues too. I’m in my 12th week and can report that all my ataxia symptoms have show really good improvements. Of course, the treatment may not have similar results for another person, but it’s still an interesting area to look into if you were at all interested. I won’t go into details here, but you can always get in touch with me through this blog if you’d like to know more….
Keep in mind that, I feel, without receiving stem cells, I wouldn’t be doing well enough to even seriously consider another approach to treatment. I don’t think I’d have the emotional energy to pursue it. I was so impressed by the Chinese approach to healthcare during my stay there, that it only makes sense to me to try a tradition eastern medicine for my particular health issue. I may need to return for future stem cell treatments, but this is a complimentary method that has been very beneficial for me.
On the home front, well ,we’re all doing good . My son will be finished grade 10 in June so he’ll be thrilled (he’s a teenager…what can I say!) I continue with my physio/exercise routine and have upped my treadmill to 20 minutes, at a higher speed also because I’m doing so much better. It also helps keep me trim because, hey, I’m 49 now… It SNOWED here in Vancouver last night! What’s going on? It’s supposed to be spring*#@% I was in my shorts a month ago and now all the daffodils are covered in snow! Global warming?! By the way, I’m on Facebook so you can find me there if you have a profile. I’ve started a Stem Cell Recipient group and, so far, I’m the only memeber so sign on, if you’d like. Till next time…take good care…
Christine
P.S. The traditional Chinese medicine I’m taking, among other things, contains many different kinds of roots…
April 20th, 2008
Welcome to the New Year. Special greetings go out to R.V., currently in China receiving treatment. Thank you for your comment to my blog-I’ve been eagerly reading about your progress and am pleased to know everything is going so well for you…Anyone can read the blog , on this site ( under “Ataxia Man”) or directly at:
http://anonymouse.org/cgi-bin/anon-www.cgi/http://stemcellataxia.blogspot.com/
take a look at the fund-raising site:
http://www.mediumonline.ca/news/index.php?option=com_content&task=view&id=942&Itemid=96
How true , what he says, we should learn from the rat’s positive qualities. It’s great to know there is a place offering us hope for wellness and a group of people encouraging us to strive ahead. How refreshing-a nice change from the standard, “well, you can’t do this “ or the equally frustrating, “sorry, we can’t help you”!
My latest bit of news thats pretty exciting is stumbling on an article about a traditional Chinese medicinal treatment for spinocerebellar ataxia (my diagnosis). If you want to have a read about the clinical study, done in Japan, the site is:
http://www.ingentaconnect.com/content/bsc/ggi/2007/00000007/00000002/art00017
This is only the abstract (summary) but it gives you the general idea. To make a long story short, I am doing the same treatment here, with the help of my Doctor of T.C.M. (traditional Chinese medicine). I’m only in my 3rd week but so far, so good. I’ll report more as time goes on-I do the treatment for 8 weeks.
I haven’t had any significant changes since returning from my treatment a little over a year ago ( I got home Jan. 17 ‘07) and am doing just as well as I was then. I feel new improvements have tapered off but it’s hard to know if they’ve stopped or just slowed down. At least they aren’t disappearing …I’m STILL doing exercises, every day for an hour. I’m doing more now because, well, I can & it feels good. Contrary to some accounts I’ve read, it’s not hard to set up an exercise regimen. You don’t need a lot of money or, even special equipment. All you need , really, are a set of stairs and a stretch of open ground to practice walking ( a sidewalk, part of a basement?) I have a treadmill because we had one before and I find it useful-but I don’t need one….I can balance on one leg almost anywhere, the same goes for touching my nose, etc… with eyes closed and doing squats. Handwriting can be practiced anywhere, anytime-the same thing for getting up & down from a chair. If you can’t do those things, do what you can. No one’s making you do it–it’s not like school-after all, it’s a personal choice. But, it certainly can’t hurt, the alternative is fading away… I don’t believe some of the whinging & complaining I’ve heard from some sources. I mean, come on!!! There’s no pleasing some people…. I will add that I am not a “jock” and this is a personal opinion !
Best wishes for a joyful, lucky and prosperous New Year to all my Chinese friends (and everyone reading, actually) Hello to Angela (you found me on Facebook!) It’s snowing right now in Vancouver so better stoke up the fireplace….
Till next time…take good care…
Christine
The quieter you become, the more you are able to hear.
- Lao Tzu
February 7th, 2008
A year ago today, our plane descended into a darkened Hong Kong. Thousands of sparkling lights appeared out of the darkness, and after being processed through the airport and collecting our luggage, we were met by our driver, Jack. After our luggage was quickly stowed on board the sleek black van, we were wisked away into the night and onward toward Nanshan Hospital in Shenzhen . This place became our home for the next 27 days-I say “home” because that’s what it became. Sure, I missed my family, my own home, my own city, Vancouver,all the familiar places, even a coffee from Starbucks! But, after a year home, I wouldn’t have changed that experience for anything…
Realistically, I went for the stem cells. Like so many others, my medical condition , would only respond to and benefit from stem cell treatment….and I wasn’t going to be able to have that anytime soon in my part of the world. My ataxia wouldn’t wait for the treatment to come to me, so I went to it… Everything else that would happen to me in China was secondary…or so I thought. Yes, the stem cells have made a tremendous positive difference for me. I’m glad I didn’t believe any of the horror stories discussed by the western media ( and many doctors) about the dangers of heading east for this treatment. I’ve regained abilities that had gradually declined over the years. What a joy to ride a bus to go somewhere, walk up & down the stairs easily, be able to speak clearly & without hesitation. For me, it’s like the clock has been rolled back several years. If you’ve read my blog before, you’ll know that I still do my exercises…religiously. I believe in their value, physically and mentally, so I continue with them. I don’t know how I’ll be tomorrow, next month or next year, but none of us know that about anything… It almost doesn’t matter….the treatment has helped me, for now, if that continues-great. If not, well, now I have some hope. There are many things to consider before going to China for stem cell treatment. If undecided, I would say, by all means, go for it. Do it. This is a real chance for regaining some of your life, things that you’ve lost.
At this time, I also reflect on the profound impact EVERYONE I met at Nanshan had on me . And I mean everyone-the doctors, nurses, therapists, Beike staff, orderlies, security guards, shop keepers, lab techs, and , especially, all the other patients. You didn’t have to be chummy or even social to be impacted by the other patients on your floor. We were all aware of each others progress, difficulties, treatment. Maybe not everything, but you couldn’t help but cheer on and empathize with others also receiving stem cell treatment. There was no outside “stress”, no family concerns, school, financial worries, ringing phones, crowded schedules - only doing therapy and getting well, catching up on sleep. No concerns about moving around the hospital, it’s meant for people with mobility issues and all of us patients had some difficulty getting around. It was a relief not having to think about it for awhile! I kept to myself a lot, as is my habit. I caught up on my reading, sleeping, movie-watching, did a bit of shopping, more sleeping! But, those moments shared with my “neighbours” are times I’ll never forget. I remember welcoming 2007 in, crowded onto a small balcony with a few others from the “14th floor” at Nanshan; Papa John’s pizza, a group of us descending on a nearby, fancy hotel for their buffet dinner, the Christmas tree in the lobby…
Of course, I might have been homesick and, after awhile I admit, I craved my own bed, own food, own routines . But, the Beike staff, especially, couldn’t have done more to make my stay more pleasant. A fun bunch, professional and helpful. All the hospital staff was great too-English was never a real problem-if translation was needed, there was always someone from Beike on hand to help. I know I sound like a commercial, but it’s true. Beike Biotech is years ahead in their research on stem cells-I’ve done my research too! They are offering excellent treatment with some great results for patients. They are the real deal….
So, these are my thoughts , one year post-treatment. I would like to go back… Anyone in China now, receiving treatment, I wish you all the best. You may be spending Christmas ( and New Year) there, so make this time of healing a gift to yourself. For those I’ve met in China and those I’ve met through “the Net”, have a peaceful, joyous holiday season and best wishes for 2008!
You must be the change you want to see in the world.
Mahatma Gandhi
Christine
December 20th, 2007
Hello all,
Living in Vancouver,B.C., I’m now contending with the rainy season. We’ll have rain ( not steadily! ) from now until about next May. We’ll have brilliant days of sunshine & warmth sometimes, and very little snow (some Vancouverites like to wear sandals all year…), but it will be wet. That’s why it’s so green BUT, the downside is that you have to be prepared to not get soaked every time you leave your house. Anyone with mobility challenges can find that an umbrella becomes a useless accessory. I have a collection of umbrellas that I now occupy a place in the storage cupboard downstairs. Now , I buy jackets and coats with hoods. I need both my arms free for balance and holding onto things , sometimes, for safety. Try juggling a wet umbrella and a handbag or try to negotiate a narrow, slippery sidewalk or go up a flight of stairs…. What about trying to get on a bus? No thank you. On days I’m walking somewhere local with a light bag and no plans beyond grabbing a cup of coffee somewhere, I’ll haul out an umbrella for old times sake. It makes life much simpler. I’m like a bicycle courier now-strap on a messenger bag, stuff my pockets or wear a backpack and a courier/gortex style rain jacket. So much for style, but I’d rather stay mobile, upright and safe….
I had some friends inquire about my stem cell experience and one of the people had M.S. . She asked if I’d gather some information together and, while doing that, I took a look at Betty Helm’s M.S. experience & blog on this site. Wow! An inspiring read, if you haven’t already looked at it, please do so. In correspondence with her , I learned that , along with her daughter & son, she is forming a nonprofit corporation called “Stem Cells for Hope”. Their mission is to pass along information about stem cell therapies available now and to fund-raise to send patients for this treatment. The website should be up & running in about a week and the address is: www.stemcellsforhope.org Betty Helm can be reached through her blog or at bettyhelm@cox.net This is wonderful-we need to learn about the facts “as experienced by an actual patient”.
On the negative side, I’ve read a scathing article at:
http://www.6minutes.com.au/michael_blog/blogposts.asp?postid=509
Don’t misunderstand me-there should always be an open debate on medical issues and treatments, that’s how we can open our mind and learn about things. But this article doesn’t seem to be based on any “real” facts and is VERY one sided. Digging deeper into the issues instigating the writing of this diatribe, I uncovered a lot of comments that reflect, well, the only way I can put it is “sour grapes”. Everyone has a different interpretation of their experiences and is certainly entitled to their opinion . but, sometimes I find, you get as good as you give. Attitude can make the ultimate difference…
On the personal side, I had 6 incredibly good weeks. It was as if the calendar had been rolled back 4 years. I was doing so well, I felt as if I could start running! ( I didn’t ). I have more of these days now and for longer stretches too. Now I’m not doing as well, but still much better than a few months ago. It’s all very encouraging and I continue with my exercise routine , which has become habit by now. I’m almost 49, so exercise has the added benefit of helping me keep in shape!
Before I sign off, best wishes to Suiling and her husband. They are in Beijing right now & her husband is undergoing treatment. I’ll also send greetings out to anyone else I know who may be reading this blog and “catching up on the news”. Till next time…
“I get by with a little help from my friends” - John Lennon & Paul McCartney
Christine
November 5th, 2007
Hello everyone,
Well, it’s officially fall now and I’m beginning to notice lots of subtle changes everywhere. Of course, the weather’s changing - where I am , in the Pacific Northwest, this means, more rain, earlier evening darkness ( and in the morning ! ), and the leaves are beginning to turn colour. The kids are back at school so there’s more traffic and homework! In Australia, the opposite is happening and I’ve heard from a friend that New Delhi is still pretty hot.
Personally, I’m in my 8th month home from China and am really pleased with my continued progress. I continue my exercise program and have noticed my energy’s improved as well as consistently being able to get up & down from a chair ( and a toilet! ) without hanging on to anything. This is great because I couldn’t always do this even a month ago. Also, my hand writing has improved a lot and keyboarding is better. I squeeze a stress ball every night for about 45 minutes while I watch T.V. - I wonder if that’s helping? I have longer periods of improved abilities (3-4 weeks) and, at times, my gait has become near “normal” and effortless.
I spent quite a few years having difficulty walking ( hey, I still have pretty lousy days sometimes…) and walking stiff-legged without bending my knees. My body is still “trained” to do that and it isn’t helping me anymore. Now that I have better balance, I don’t need to stiffen up my knees , trying to find more stability. Most people bend their knees a little when they walk, this helps bring the foot up & affords some “shock absorbtion” . As I tripped and stubbed my toe for the twentieth time one day, my father suggested I lift my knees more when I walk. I tried it, he was right! I can do that now because my balance is good enough so that I don’t fall over. At first it seemed weird and I had to practice on the treadmill, exaggerating my movements, but now I seldom stub my foot and my walk is more stable.
It’s really helping, also, that friends , family , & neighbours comment on how I’m doing. When I’m out & about shopping or something, a neighbour will see me and comment that I’m walking and moving better. Members of my family notice things about my mobility that I don’t. I think I’m too close to the situation to be a good observer. Others can be pretty objective how I’m doing and their feedback is invaluable. I have pretty good instincts about how I’m feeling though and am fine tuning my skills at “pacing” myself .
Again, I so pleased to hear from people -those I’ve met and those I haven’t. The networking we all do is so important in furthering stem cell treatment and research. Keep on communicating. AND here’s my chance for sending out “hellos” (if they’re reading) to: Rachel, Garry, Mac & Jill in Australia, Tony in Beijing, Gigi in India, Dave, Penny, Pat, George & Mellisa in Canada, Tom, Connie, George, Geri, Linda , Henry, Jim, Dave & Dianne in the United States, Ben in Italy. Whew, that’s really starting to cover the globe…
Talk to you next time,
Christine
Hope is a waking dream. (Aristotle)
September 30th, 2007
I’m in my 7th month back home and got my 6 month “patient evaluation” form from China a few weeks ago. This is the same stuff that Dr. Lee had me do before & after my treatment- sitting/standing, standing one one foot, etc… I’m pleased to say I’m doing as well, if not better, than after my treatments. Although I’m not experiencing the huge improvements that I was initially, I still having small improvements and feel much more “stable”, all the time, in everything I do. And my energy is much better… I know I’m always talking about my exercises, but I’m still doing them all faithfully and , I believe, they’ve helped make the difference for me. I now view them like brushing my teeth every day-something I just “do”.
Hello to Scott whose having/had his treatments and is doing well - all the best. Also, I’ve enjoyed reading the updates on Kim Poor’s and Nick’s blogs-good to hear how you’re doing , thanks… Dr. Payne’s blog is also interesting…. Greetings to fellow Canucks, George Arruda and Mellisa, hope all is well and, if you’re reading, hello to Rachel & Gary.
Why this heading? Well, until we found the hole in our window screen , we were plagued by mosquitoes keeping us awake every night. For some reason, they’re very bad in Vancouver this year. They love me too-when I get bitten (which I do frequently) the bite site swells up to the size of a saucer and itches like *%&! For about a week they would buzz my ear at night and keep me awake till the wee hours. Finally, I’d tent the sheet up around my ears and fall asleep eventually. For about a week I was exhausted and dragged myself through the day yawning & stumbling. Sleep is always important but now I really see the value of it. I REALLY need it-rest is so important to my physical (and mental) well-being. On days I don’t get adequate sleep, I’m toast-well my mobility, balance, co-ordination suffers tremendously. I could get away with fatigue before ( and not even notice it ) but not now. If you’re system is compromised by any sort of health issue, rest is so important. I feel really good now about all the afternoon naps I took in China. My body always knows…
I’ll sign off but will update again in a few weeks,
It does not matter how slowly you go so long as you do not stop. - Confucius
Christine
August 20th, 2007
Hey, I’ve been home for 6 monthes. Wow! Hard to believe… Hard to convey all the positive changes my trip to China has brought about. Not only new stem cells & re-found abilities, but a different attitude toward almost everything and contacts from people around the globe.
The other day, I had a chance to read an e-mail containing info. on the Beike treatment and umbilical cord stem cells ,by Dr. Monique West. It’s definitely worth a read to learn about the finer points of umbilical cord stem cells -what exactly they are and what they can do. I didn’t know a lot of this current information and I’ve been there for the treatment! Fascinating … and worth learning about. She also mentions the “holistic” approach to treatment through Beike. How true & important. Whenever I mention to anyone that I’ve been to China for stem cell treatment, I stress the “therapy” aspect. Beside the injections of new cells, each patient receives a customized program of accupuncture, physiotheraphy, speech & occupational therapy, massage, and more depending on your condition and health. All of these components working together are vital to your progress, health & well-being and ensure the best possible outcome to every patient.
I’ve always heard & read about the “mind/body” connection but never really comprehended it fully. until now. . I was chatting with a friend on the phone the other day about the importance of this very thing. I’m able to see & feel how that connection works in my life now. It began in China, with the holistic approach to my physical health. This spun off into my mental health & well-being with new energy, hope for improvement, positive attitudes, caring & acceptance . When I returned home, for awhile, I just felt like being quiet, getting back to “normal”, putting my trip behind me…No way! I couldn’t do that, and I’m glad I haven’t. I’ve been writing this blog, writing to others I’ve connected with on-line, writing to physicians, therapists… It seems to be snowballing & I’m pleased. There’s now an informal network of people chatting back & forth, exchanging info, getting in touch. As well, there are myriads of sites and forums, all places anyone can go to to learn & exchange info about stem cells. It’s great, my world has expanded, besides those I met while in China, I’ve also been able to connect with others all hoping to improve their quality of life and life for those around them.
Practically, I’m still doing those exercises ( I must admit, I’ve been too lax on the fine motor stuff…!) Yes, I still have good & bad days but ,I can honestly say, I haven’t had any decline in my abilities. I attribute a lot of my progress to the exercises, I know, also, some of it depends on my general constitution and aspects of my condition that we can never know about (unless there was a clear window looking into my brain!). The positive aspect of the support & good wishes I receive from others does tremendous things for me and the contacts I’ve made from everyone since my return home are inspiring & empowering . We can know we’re not alone in our experiences but it can take sharing those experiences and thoughts with others to truly realize that…
Talk to you again soon. Take good care & best wishes…
July 16th, 2007
