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Life Upright (good bye OI)

Discussion in 'Autonomic, Cardiovascular, and Respiratory' started by spindrift, Mar 21, 2010.

  1. spindrift

    spindrift Plays With Voodoo Dollies

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    Wearing my g-suit (anti-gravity fighter pilot suit) and dancing to:

    http://www.youtube.com/watch?v=7yqvgzduFWc

    :victory:

    I can't believe how much it helps! My brain is SOOOOOOOOOOOOOO back with me.

    I have been doing Sarah Myhill's protocol for 7 months and got to the point
    of feeling well at rest. As soon as I stood up though I would feel miserable, so I
    gave the g-suit a swing. I love instant gratification!!!!!

    Here is info on g-suits:

    http://www.oiresource.com/gsuit.htm

    Gotta go and contact Prada to let them know about the new spring fashion
    trend. :D
     
  2. Sasha

    Sasha Fine, thank you

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    Wow, spindrift! Congratulations! I bet you look damned stylish, too.

    Have you been outside in it yet? I read on the webpage that recommended them that somebody who asked that woman why she was wearing the suit thought that she might be using it to hide puppies in (!).

    I'm still waiting on the compression tights I ordered but can't imagine they'll be anything like as transformational. Good for you! I'm glad you've got your brain back! :D:D:D
     
  3. BEG

    BEG Senior Member

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  4. flybro

    flybro Senior Member

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    pluto
    fight-pilot clothes

    i want one, no i dont i want ten,

    flybro fly in fighter-pilot g-suit yeeha.

    God I really really want one.

    i'm really diddy and was built to fly fighter jets I just know-it. I would do loop the loops all day long.

    if i get a g-suit its more than one step closer to my fantasy career.

    big massive huge smileys

    just the thought of wearing something called anti-grav makes me feel all wowy.
     
  5. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    When I was coordinating a support group for OI patients, I invited a Navy pilot (live near a base) to come in and demonstrate a G-suit. He also taught us the exercises that pilots do if they are not wearing G-suits. The Blue Angels--Navy Acrobatics Show Team--don't wear G-suits and rely solely on these exercises while flying--lotsa abs and butt tightening tricks. ;)

    Actually, a lot like pilates! So I try to do these and they do help, but the G-suit is tops! BTW, a friend bought several on places like Amazon and they all leaked, so choose your source.

    Great going! We'll not only revolutionize medicine but also fashion.

    Sushi
     
  6. spindrift

    spindrift Plays With Voodoo Dollies

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    @ Sasha

    I have not been out yet. Need to do a few things around the house today. Tomorrow is the big day for going out. Love the idea of people thinking I am hiding puppies. I am sure I will have some comments I get from people to post here soon. ;)

    @ Brown-eyed Girl

    If you get one you could dance to a different song everyday. :D

    flybro

    With a name like that you are predestinated to wear a g-suit. I do need to let
    you know the suit does not come with a jet, you need to order that separately. :D

    Sushi

    I would love to know what exercises help. Could you possibly post some here?

    If the suit doesn't leak too much, it should still work. It is very easy to blow the
    air into it. You could just adjust it now and then by blowing a little more air
    into it.

    The hose you blow into kind off looks like a tail and my cat is now a bit jealous
    because my tail is longer than his. :tear:
     
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Spindrift,

    The Exercises are really just tightening and releasing the muscles in the butt, thighs, and abs. The trick is to keep it going while you are at risk--i.e. standing.

    However, when I started Pilates, I told the teacher that I would not be able to do all the reps etc., cause of a medical condition. She replied that she understood completely cause from childhood, she would suddenly pass out while standing. I was totally amazed to just "stumble on" the perfect pilates teacher for me!:D

    Pilates had more or less cured her. She hasn't passed out in 4 years. It has helped me a lot too, cause it teaches you to work these critical muscles. And, you do it lying down! :victory:

    These exercises are sort of like a self imposed G-suit--though not as powerful. Also, gotta keep at it. Still....I'm standing.

    Sushi
     
  8. spindrift

    spindrift Plays With Voodoo Dollies

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    Thanks Sushi,

    I have intended doing core exercises. I am going to check out how the g-suits works
    this week. Need to check how much I can do without crashing, because that would deplete
    the purpose of being able to be upright. ;)


    Also wondering if anyone has any experience doing rowing? I am able to do some recumbent
    cycling without getting worse. :victory:
    I think rowing might be better though because it works your upper body too.
     
  9. Chris

    Chris Senior Member

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    Ah, rowing...

    Spindrift, you can try rowing, but be very, very careful--I love it, have a Concept II that I bought about six years ago, but using it is the quickest way to precipitate a crash that I know of. It uses so many major muscle groups simultaneously that my whole body runs out of ATP just as I am getting into the rhythm of the movement. It feels great while I do it, but as I step off I know I have done too much--and it was pathetically little compared to what I used to do, and at a much higher pace.

    So have fun, try it, but take great care..... Best, Chris
     
  10. flybro

    flybro Senior Member

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    pluto
    wow if i cud go cycling again now that wud be soemthing
     
  11. Sasha

    Sasha Fine, thank you

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    I'm curious about any more detail you can give us about this, Sushi - e.g. do you have to tighten the muscles in any particular order, or all at once? Tighten and hold for how long, release for how long? As soon as you're standing or after a while?

    I had a look on the 'net to see if I could find anything about the pilots' anti-G exercises and found this 30-second footage on YouTube of a female pilot doing the exercises during a flight (or simulation maybe) - you can't really tell what she's doing but it looks hard work! There's her instructor's voice urging her on in the background (maybe that's what I need at the bus-stop). He's shouting "legs, butt, stomach!" which makes me wonder whether that's the order in which you need to tighten stuff (which would sort of make sense if you're trying to squeeze blood back up the body) or maybe it's just a list of which you've got to remember to do all at the same time (which would make sense in another way).
     
  12. Sasha

    Sasha Fine, thank you

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    Spindrift, there's a thread I started last week about Dr Benjamin Levine's exercise protocol for people with pure OI/POTS and whether people with CFS could do it, that has been interesting (here it is). His regime (the right word - it's really strict and intense) includes recumbent exercise in the gym, specifically recumbent bikes & rowing machines as well as other interventions. People were discussing whether we could use Staci Steven's approach to exercise to get the benefits of aspects of his programme without killing ourselves.

    I don't want to hijack this thread about the g-suit, it's v. interesting - just to let you know that that info is there. I might start another thread on Staci Stevens, I'm struggling to understand her rationale but that's because I know nothing about physiology (as you can see from the other thread!).
     
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Sasha,

    I looked at the YouTube and yes, that is about what the Navy pilot was showing us. I think you are right about beginning the contractions at the "bottom" and moving up. Also notice, that she inhales before she starts the legs, butt, abs contractions and exhales afterwards.

    Yeah, you might get attention at the bus stop if you had a friend coaching you! :D

    But remember, the G forces that pilots are dealing with are extreme, so the intensity of their preventive exercises have to be also. It is sad, but interesting that every time one of the Blue Angels Navy flight team (that doesn't use G-suits) has crashed, they have traced the cause back to not doing these exercises properly--I remember one guy had a broken rib that interfered with the contractions.

    My pilates teacher is constantly reminding us "stomach to spine" or--suck in your gut all the time. I have learned that every time I need to do something unusual (like lift something), if I tighten all these muscles, I have no problem.

    There is another exercise that I found (an actual journal article--which of course I can't find) that is effective for helping keep the blood vessels in the legs tight. Picture this: with a large exercise ball behind your lower back, place yourself against a wall and squat down till your thighs and calves are at right angles--you are in a "chair position." Hold this as long as you can and do it frequently. This was shown to lessen orthostatic intolerance. Course all this stuff requires regular effort, and that is the catch.

    Sushi
     
  14. spindrift

    spindrift Plays With Voodoo Dollies

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    @Chris,

    Wow a Concept II!!! I take those are the best rowing machines around. I bet you really miss exercising like you used to.
    Thanks for your input. I will take it slowly maybe 3 minutes at first. Need to go gym shopping next week to find a one
    that has a good rowing machine. Wish I could have one at home, but that won't work right now.

    As far as ATP production goes, I truly believe that has improved with doing Sarah Myhill's protocol.
     
  15. spindrift

    spindrift Plays With Voodoo Dollies

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    Love my g-suit

    Thanks everyone for your input. I am happy to hear about exercises on this thread,
    so keep posting. I am trying to put a exercise program together for myself.

    SO, today was my first day out with the g-suit. Not a single comment on it. It was
    as though no one really payed attention, which thrilled me, since I haven't come
    up with an explanation line yet.

    I was able to stand still at the bank teller for several minutes without feeling queasy!
    I have such drastic cognitive improvement, that I don't want to take the g-suit off
    anymore.

    I have been monitoring my heart rate, hoping the suit might bring it down, but it
    seems to be the same. So while I am tolerating being up right way better, there
    is no change in my heart rate with or without the suit.
     
  16. Chris

    Chris Senior Member

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    Hi, Spindrift--good luck in finding that gymn--many good ones will have a bank of Concept IIs--they are built for heavy use (sigh....). I learned to love them in our local gymn... Ah, the good old days! Take care, Chris
     
  17. kerrilyn

    kerrilyn Senior Member

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    That's great, Spindrift. The idea of being able to stand AND think clearly - wow! Gotta look into getting a suit.
     
  18. camas

    camas Senior Member

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    My g-suit arrived recently too. Unfortunately it has a leak, so I have to blow it up about every 10 minutes when I'm up and about, but I have been pleased with the results so far. I've been using it mostly around the kitchen and have noticed that it rids me of that feeling of imminent collapse I get while standing in one place. I've been monitoring my blood pressure just to make sure it doesn't send it too high. It does raise it a little too much when I'm in my recliner with my feet up, but deflating it brings it down quickly. Now if I could just figure out what to do with the tail!
     
  19. IntuneJune

    IntuneJune Senior Member

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    Spindrift....................

    WOW, glad to hear you are having success with the G-suit. My husband was a former Navy pilot and is very familiar with the suits.

    Now you need some good one-liners... for when the questions start when you are out in the community. I am thinking you need a number of answers depending on your location, attitude of the inquirier, as well as the question itself.

    Now if you had a blow-up horse to go with the blow-up chaps....... you may never be approached and there would be no need for answers.

    Why not ask for some help, maybe start a new thread ..... ask members for input. I would love to hear some of the answers this group would offer!!!! Alas, I would have to travel around with the inflatable horse.

    June
     
  20. spindrift

    spindrift Plays With Voodoo Dollies

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    Day Three in the G-suit

    :victory: OMG :victory:

    I just can't believe how much of a life I have gotten back! Hope I don't crash tomorrow.

    The really amazing little thing that tickles me pink is, I get up and start walking without
    having forgotten where I actually wanted to go. ;)

    @ Chris

    I feel your pain. I too am surrounded by things like a pool, a trampoline, bicycle and a
    wet suit (wanted to learn to surf) that I can't enjoy anymore. There are days when
    just looking at one of them brings tears to my eyes. Maybe someday...........

    @ kerrilyn

    Definitly go for it! It's not cure, but it sure makes waiting for a cure more
    tolerable.

    @ camas

    I am happy that your g-suit is helping you so much.
    Yes, the problem with the tail!!! I now tuck it in just above the left thigh cushion
    pulling the metal valve out so it is not under the suit. That solved the problem
    right there. My suit also leaks a bit.

    @ IntuneJune

    Inflatable horse :tear::tear::tear:. Love it!!! I am sure that would stop anyone
    dead from asking questions, plus while driving I could put it on the passenger
    seat and finally use the car pool lane on the freeway!
    I have followed your suggestion and asked for one-liners in the community
    lounge section. I am sure with all these great minds on the forum I will
    have a wealth of lines to choose from.
     

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