March 1st, 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 )
Entry Filed under: ataxia,ataxia
