Posts filed under 'ataxia'
Hello everyone..it’s been quite awhile since my last post. Hard to believe that, at this time 3 years ago, I was in Shenzhen , China, just embarking on my stem cell treatment. A lot has changed since then. In the medical world, more eyes are turning toward the wonders of stem cells. Every day, new discoveries are being made showing just how stem cells can offer amazing benefits for anyone whose health has been compromised by any number of medical conditions. More people are receiving and reaping the benefits of stem cell treatments without having to sneak off wondering if they’ve done the right thing….they have and they do. The experts performing these positive , life changing treatments have more knowledge and experience. The word is getting out about stem cells now, very different from when I made my journey to China in 2006.
I still retain all the physical abilities I regained frrom my treatment. Moreover, my life has changed, also, for the better because my experience in China helped me to learn that there can be a more positive approach to medical matters. While there are never guarantees with ANY sort of treatment, stem cells offer someone a chance to regain wellness. A far cry from the message of ” sorry we can’t help you , there’s nothing out there to help you”. I’m now fully in charge of my health & wellness…it’s a great and very empowering feeling. That, even in itself, is invaluable when dealing with any chronic condition.
Moving forward…I still exercise every day. Now that I can move more, I do almost every chance I get. It’s truly a joy to be able walk, speak clearly, to get up from a chair, go up & down stairs, take the bus….. I never take it for granted…stem cells have given me that. That’s priceless…
If you can just flex your toes, walk a few steps, get up from a chair, climb a step-do that. Keep moving, if you can, use what you have, every little bit is important. Otherwise , it’s tempting & far too easy to just slow to a halt and stop everything. And it may not come back…
At this time, espescially, I’m thinking of everyone I’ve been in contact with since returning from my treatment. Everyone who may be in China , now, receiving treatment. I wish you all a Merry Christmas, good health & fortune in the New Year…
Best wishes,
Christine
“May the dreams of your past be the reality of your future”
December 25th, 2009
Wow, it’s been awhile since I’ve written….but ,at least now, I have a few interesting things to write about. Where do I start….well, on last September 28 I woke up with a wicked case of vertigo- I figured it was the flu, although I didn’t have any other “flu” symptoms….Anyway, In a couple of days I went to see my Chinese doctor of TCM ( actually I was driven because I was too unsteady still to take the bus or a taxi) for my weekly visit and to get my herbal medicine. I told Dr. Lu what was happening to me-vertigo, feeling hot & cold, rapid heartbeat, nausea) and he starting feeling my neck. Several of my cervical (neck) vertebrae were severely misaligned-the cause of these problems. To make a really long story short, this misalignment was the cause of the symptoms, as well, we unravelled a history of spinal problems I’ve had over the years ( close to 30). I’ve been to chiropractors, had x-rays done by various physicians and presented problems that were never severe enough to warrant further investigation by any doctors and elicited lots of shrugs and “I don’t know what it could be”. I’ve also had lower back (lumbar) pain & problems for years too.
In 2004, I was diagnosed with sporadic ( non-hereditary) spinocerebellar ataxia- they don’t know why I have it, something caused it but they don’t know what. It seems that many major arteries and nerves between the body and brain travel through the neck ( remember doing those stick figure drawings we did as kids?) What happens when the neck vertebrae are compromised and/or pinched? Brain function is also compromised, oxygen flow can be interrupted, neural cells can die. Some of our ability to balance is governed by our neck ( hence my vertigo). What can happen when the arteries and nerves in the neck region are not functioning as they should for YEARS? Who knows, I don’t, you draw your own conclusions. I do know that since Dr. Lu has been giving me acupuncture and gentle adjustments to these areas of spinal misalignment, my ataxia symptoms have improved. Did my various doctors & neurologists ever look into these problems or even ask about them during my diagnosis? No…I didn’t think to mention them, I’d been doing that for years already and, after all, I’m not a doctor. Should they have looked further into it? Probably, but it’s a moot point now because I’m working on doing what I can to treat these problem areas and do something about it now.
I guess, a point to remember is, don’t accept what is presented to you at face value. Ask questions…often, there’s more to a story, more than one answer…
The good news is that, in my 3rd year home from my treatment, I’m doing well. In fact, I’ll be taking a trip down to Mexico next month,m with my father & son. I couldn’t have even dreamed of doing this without my stem cell treatment. It’s an amazing this…anyone reading thinking of signing on for the treatment…do it.
There are a few of us, who’ve had stem cell treatment, who keep in touch by e-mail and chat about how we’re doing, what we’ve discovered since coming home-it’s truly great to have people to connect with who’ve “been there”, no what you’re feeling & going through. I’m reprinting part of my last e-mail I passed along to people-these are some of the things I’ve observed:
- I’m starting my 3rd year since treatment and I’ve really seeing the ebb & flow in my abilities but , overall, I’m way ahead of where I was before I went to China. My energy has remained good-that’s almost the biggest improvement for me. I’ve also had a lot of comments on the improvement in my speech-that stays good ( along with choking on liquids and food, occasionally-virtually no problems now). As soon as I get fatigued or it gets later in the day, that starts to fall apart- a bit like a battery losing it’s charge! When I first returned I wondered when I would start to see a decline-every “bad” day made me think, “oh well, this is it…the progress is already wearing off” I first noticed not doing as well, as well I did in China , after I’d been home about 2 months. This only lasted about 2 weeks and, after that, I started to do even better. This happened every few months-I’d have a brief period of “decline” followed by a surge of improvement. I noticed I could stand up from a sitting position better a full YEAR after I’d had my treatment. My doctor in China had explained that, even though we are told 6 months for neural development-stem cells grow in fits and starts, not necessarily a smooth uphill line. What I took as “decline” was a leveling off of abilities. Treatment brings on an initial surge of rejuvenation and function and it’s bound to change over time. My abilities are different now than 2 years ago, certainly not worse , better in many ways because my muscles/brain have worked on “re-training”.
- I attribute a lot of continued health to the physio & other exercises I do consistently BUT , like Michael, I think lousy weather & less intensive P.T. have something to do with not doing as well sometimes.
-the treadmill is great for working on gait. I walk slower now (1.4 mph.) because my Chinese doctor of TCM explained that this would be better for my muscle strength and balance…I’m sure he’s right as I’ve noticed an improvement since doing it this way . I do 20 minutes/day, slower speeds alternating with faster (1.8-2.2 mph.)
- no improvement in fine motor skills. Writing is impossible ( beyond a cheque signature) and printing is difficult. This decline has been very slow though and, to be honest, I don’t work on it much beyond using this keyboard.
- yes, expectations can be high but all improvements are good ones really, no matter how long you have them for,and we’ve got others to keep in touch with about this. Stem Cell research, improvements and gains are happening so rapidly now…
- I am not a slave to exercise-I’ve got to live to…sometimes I just take it easy…
The best advice I’ve received and what I’ve discovered, so far:
1) bend my knees more when I walk- I tended to keep them stiff, a natural ataxia move. I’m much more stable when I bend them a bit…it takes practice.
2) walk and move more slowly & deliberately- I tended to rush. I try to move like a dancer (ha!!!)
3) lots of rest-8/9 hours of sleep per night. I NEVER let myself get fatigued or stressed- a must for neurological conditions.
4)I don’t have any negativity in my life. This sounds nuts but I’ve eliminated doctors, people, situations that were, fundamentally, bad news for me. Having this sort of medical condition can be difficult enough without negative influences on your life too. There are plenty of positive people and approaches to things out there. I don’t want to come off sounding all “touchy feely” and full of “sunshine” but I mean, come on, we’ve all had our fill of hopeless medical stories, skepticism and pessimism . I just don’t listen to that ( even unconsciously) anymore. that takes some practice too…
I hope these observations can be of use to some readers. I find it can really help to pick up info on these blogs and pass it along. Take good care, keep thinking of spring…
Best wishes,
Christine
Oh life is like a maze of doors
and they all open from the side you're on
Just keep on pushing hard boy, try as you may
You're going to wind up where you started from
( "Sitting"-Cat Stevens )
March 1st, 2009
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
