Announcement

Collapse
No announcement yet.

U.S...China...Thailand...take your pick!

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    U.S...China...Thailand...take your pick!

    I've got a rather unique situation. I'm from the U.S., I teach in China, and my neuro is in Thailand.

    Seems that MS is rather rare in China, or at least rarely dx'd. Don't really know how many cases there actually are here. Anyway, most Chinese people I've talked to about it have never even heard of the disease, even when I tell them the Chinese name for it. Since there is a world-class neuro at a hospital in Thailand, that's where I go for my checkups.

    Not sure how long the "average" time to get to your neuro's office is, but I might hold the record, because it takes me about 12 hours divided between two flights, not including the drive time to/from the airports. This limits the number of my appointments to once every three months, and most of the communication I have with my neuro is via email. Not the most ideal situation, I know, but it's the best that is available to me. And after reading so many horror stories on this forum about useless doctors, I'm just really thankful that I have such a good neuro!
    "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

    RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
    Currently following Dr. Jelinek's OMS (Overcoming MS) plan

    #2
    Your every 3 month neuro check-up is probably more frequent than the typical US ms'er. I see my MS neuro every 3 months according to DMT protocol.

    If I were not on this particular DMT, for instance if I were on one of the injectables, I would probably only see my neuro once or twice a year, or in the event of MS progression/exacerbation. As much as I enjoy traveling, I wouldn't trade your Neuro commute with mine, total of 30 mins, including parking.

    There are days when I'm fatigued, extra effort required for my neuro visits, not confident in my driving ability,etc. I would probably be a no-show for my appointments more often than not, if I had your commute.

    Now I'm curious how prevelant MS is in the Chinese American population.

    Good for you being able to keep up with that amount of travel of your neuro appointment.

    Comment


      #3
      Actually, now that you mention it...

      I mis-typed in my first post. I actually only see my neuro every 6 months, not every 3 months, because of the crazy distance. (For comparison, imagine living in Seattle and your neuro is in Mexico City!) She wanted to see me every three months to make sure Gilenya was working out okay and I wasn't developing any bad side effects. Since that's not really feasible, I'll get the tests done here at the 3-month mark that she wanted to be done there at the 3-month point, and send her the results. If the results are fine, I won't have to make an extra trip to Bangkok., and I'll see her only between the 3-month tests, every 6 months.

      Yeah, it would be interesting to find out what the rate of MS is among Asian Americans. I have a sneaking suspicion that the rate is probably higher with each generation that stays in the U.S., mainly because of diet. And even over here in China, in the big cities, I've heard that cases of heart disease and diabetes are increasing at an alarming rate, and once again I believe it's because they're "learning" how to eat western-style - lots of sugar and unnecessary, unhealthy fats. Just because they can afford it now.
      "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

      RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
      Currently following Dr. Jelinek's OMS (Overcoming MS) plan

      Comment


        #4
        Well where I'm at in Western Canada, it's more like once a year so I'd say you're very lucky. Except for the whole flying thing.

        Comment


          #5
          Where I'm at in Europe, I had my first neurologist appointment 4 months ago, then I was required to see the MS nurse, and my next neuro appointment is next week... So after that appointment, I will have been to the neurologist twice in 4 months, plus 1 nurse visit.

          I'm not sure if this is new patient criteria or what, but we'll see. I guess it beats a 12 hour commute with planes, trains and automobiles! =P
          Diagnosed 4/10; Copaxone 10/10 - 8/13
          You win some and you lose some, but that is how you learn. -ALB

          Comment


            #6
            miwealia -

            i am really interested to hear of your experiences with ms in china.

            Comment


              #7
              MS in China

              Originally posted by Zuzus11z View Post
              miwealia -

              i am really interested to hear of your experiences with ms in china.
              Hi Zuzus, sorry it's taken me so long to reply. But I guess better late than never!

              Living with MS in China...hmm...how can I describe it? Well, first of all, almost no one has even heard of MS, even when I tell them the Chinese name for the disease; they just have no idea what it's like. None. Even the doctors. Unless they're a neurologist or brain specialist, most of the doctors only have a vague idea of what MS is.

              And even then, I would never go to a Chinese hospital for any type of chronic illness, simply because you never know which doctor you'll see. Under the Socialist system that the govt. hospitals use, you just get the doctor that happens to be on duty that day. So there's very little chance that you'll see the same doctor each time you go for a checkup, and consequently every new doctor that you see will want to start from scratch, assuming they even know about MS.

              Which is why I fly to Thailand to see my neurologist. I might find a decent MS doctor in Beijing (I live in far western China, a 4-hour flight from Beijing, like flying from Seattle to D.C.), but it's actually much more cost-effective for me to go to Bangkok instead of Beijing. The really good doctors in Beijing charge really western prices.

              Fortunately, I make annual trips to Thailand for my work anyway, so I just need to add one more trip to Thailand each year for my bi-annual checkups. Also, since I only make two trips a year to see my neurologist, she gives me a half-year's worth of my prescriptions (Gilenya & Lyrica).

              That's the situation for my checkups. Regarding daily life, I'm a teacher on the faculty of the school of music in a Chinese university. Ever since I got MS about a year and a half ago, I've only been given 4-6 hours of classes to teach each week. That's not because the university has intentionally lowered my teaching load because they know I have MS. They don't know. (Actually, I have told a few of my Chinese colleagues, and they have no idea what it is. Once I tell them that I take medicine to keep it under control, and it appears to them that I can do a good job, that's all that matters to them.) That's just how my teaching schedule has worked out, and I'm not complaining at all! So I'm not overworked with regard to my energy level. My work load is well within my ability to perform well without getting too tired.

              Actually, from what I've read here on MSWorld, it seems to me that I've got a very mild case of MS. I have mild paresthesia, constant headaches (usually not too bad, sometimes very severe, always present), L'Hermittes, a bit of brain fog, occasional minor urinary issues, pretty strong tinnitus, messed up balance, and I used to have really bad fatigue, but not in the past few months since I went gluten-free. So that's my physical situation. Now that I've learned what my new limits are, it's very doable, especially since my class load is so light.

              Food-wise, there is PLENTY of fresh veggies and fruit available every day. And besides a gluten-free diet I'm also following Dr. Jelinek's OMS (Overcoming MS) diet. Overall, yes, my diet is more restricted than it would be if I weren't gluten-free or following the OMS diet, but it's very doable. Just not as much variety.

              Emotionally, I have a wonderful group of friends here who give me tremendous support and encouragement. And my wife is the best one of all! I could not have done this here without her support, going through the rough days of the first year with me, day by day making sure that she was doing all she could to help, all while she was carrying a full-time teaching load! Yep, she's the world's best wife!

              Compared to living in the U.S. with MS, yes, it's probably more difficult living in China, simply because living in China in general is more difficult, not as convenient as in the States. And although I speak Chinese pretty good (I'm American, from a small town in southern Oregon), there's always the underlying stress of living life in a foreign language and culture, always wondering how much of that conversation you really understood. But with the wonderful support that I have, so far it's been very doable. We never know what the future holds, whether I'll go downhill and need to move back to the U.S. But for now, we plan to stay here and carry on.
              "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

              RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
              Currently following Dr. Jelinek's OMS (Overcoming MS) plan

              Comment


                #8
                Hello mielewea –

                I have not been to mainland China yet. The closest I came was when we flew in and out of Hong Kong Airport on our way to the Philippines (my wife is Filipino…beautiful country btw with a rich history and lots of good eats). That…is a swanky airport to say the least.

                So you teach music. Composition? Theory? Appreciation? For some reason I imagine you teaching classical music – perhaps it’s the tuxedo. Yes – a little Janacek and/or Shostakovich or perhaps even Adams to stir the minds of the students. Was there an adjustment period for you in terms of a cultural model where the 16th note is so prominent?

                As for the MS – I do my best to avoid seeing my neurologist. Not that she’s a bad doc or indifferent to me. I like her. But I have been designated as PPMS so there are no real drug protocols for me and I don’t want to be experimented on with who knows what manner of drugs just to see what, if anything, will happen. I take lots of supplements that target the mitochondria. I exercise. I take Low Dose Naltrexone (LDN). I drink lots of water and I make sure I get my rest. I garden. I juice. And I write.

                I too have a wonderful circle of support…family, friends, other MSers I have met online and even some in person have offered the wealth of their experiences and I am truly grateful for that. That first day, after I read the email (yes – the doctor who performed my first MRI and the spinal tap notified me via email) I knew next to nothing about MS…so the first 24 hours were mildly hectic. After that everything has been…mmmm…calmer let’s say. More nuanced. I have borrowed many of the elements of the Wahls Way protocol in terms of diet. I am not totally gluten free but definitely moving further in that direction. I envy you for the veggies that you have available on a daily basis. And the noodles. Wife and I are both hardcore foodies and Southern California is a grand place to treat and remedy such an affliction.

                Comment


                  #9
                  teaching music

                  Hi Zuzus,

                  I have two responsibilities as a music teacher: 1) conducting the choir; 2) teaching English to grad student music majors so that they can access the multitude of research papers that have been written in English.

                  You might think that teaching English to music majors isn't exactly teaching music, but the way I do it, it is. Since their English is so poor, I give them the English vocabulary for all the music-related terms that they already know very well in Chinese. So in a way, I'm teaching them music theory, something they already know but not in English.

                  For the choir, since their English is also so poor, I need to be careful to choose songs that aren't too difficult lyrics-wise. Since they're all music majors (freshmen, sophomores, juniors), their musical ability is excellent, so I can devote more time teaching them the correct pronunciation of the lyrics than the mechanics of the music itself.

                  I'm not sure if I'm allowed to put links in my post, but I'll give it a try, since it's not advertisement, just my personal links. These links are videos of my choir performances. On the whole, I think they did a pretty good job, especially considering their English ability is almost non-existent.

                  These links include four Christmas songs that the choir performed in Dec. 2012 as part of a larger concert that included several other performances by other ensembles from the school of music. Then in Dec. 2013 the choir performed the whole concert. The theme of the first half - the English language portion - was English folk songs from around the world. The theme of the second half, which was performed all in Chinese (with the exception of one song which was sung half in Chinese and half in Uyghur, the local ethnic minority people group where I live). I hope you - and anyone else who might happen to watch these - will enjoy these songs. I sure enjoyed conducting them!

                  2012 choir songs:


                  **URL removed by Moderator in compliance with MSWorld Guidelines. This may be put in your Profile for all registered, logged-in members to see. Go to UserCP > Edit Details**
                  "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                  RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                  Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                  Comment


                    #10
                    Look forward to seeing the video. Please follow moderator's advice.

                    Comment


                      #11
                      Links in profile!

                      Done! I've posted the links in my profile. Unfortunately, it appears there's a limit as to how many links you can post. So I was able to post only five of the fourteen links for my choir performances. Hope you enjoy those five!
                      "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                      RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                      Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                      Comment


                        #12
                        Those are great - thanks for posting them. Also enjoyed the versions of Danny Boy and Pomegranate Flower (and this one couldn't have been easy to pull off with the brisker tempo...kudos to you and your students).

                        Comment


                          #13
                          Thanks! I love my job! I just hope I will be able to continue doing it for a long time!
                          "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                          RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                          Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                          Comment


                            #14
                            Hello mielewea –

                            I'd like to go teach english in China (in Shenzhen). I have a very light case of MS, so my life is pretty much normal. I guess my concern is paying for medicine (I use Copaxone).

                            Is any of the MS meds affordable in Thailand where you go? I have no problem flying to Thailand every 6 months to see a doctor. But if I could cross the border to Hong Kong and afford the meds and doctors that would be great.

                            Comment


                              #15
                              Teaching in China with MS

                              Hi Dude,

                              The med that I was taking (Gilenya) was about half the price in Thailand that it would have been in the U.S. But I had to get a 6-month supply of it every checkup because it's not available in China.

                              I'm not sure about the price of MS meds in Hong Kong, but generally speaking the cost of living is considerably higher in Hong Kong than in Thailand, and certainly higher than in mainland China. You might find it worth the extra cost of transportation to go to Bumrungrad International Hospital in Bangkok rather than going to Hong Kong.
                              "He is no fool who gives what he cannot keep to gain what he cannot lose." - Jim Elliot

                              RRMS, dx May 2013, on Gilenya from May '13 - Aug. 14
                              Currently following Dr. Jelinek's OMS (Overcoming MS) plan

                              Comment

                              Working...
                              X