*** LOG OPENED: Wed Apr 28 11:02:06 1999
---
Participants:
  disabled
  ChanServ (nanook@eskimo.com)
  Lily
  Kark
  Mooooooo (azdse@uswest.net)
  anny1
  atrpilot1
  camille
  Lonewolf
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<Lonewolf> OK hello everyone 
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<Kark> hi judi 
<Lonewolf> tonight we have a guest speaker 
<Lonewolf> anny 
<Lonewolf> she is going to give a talk on amc 
<anny1> I am going to start by asking daniel to help me 
    out and do what he does anytime anyone asks what AMC is 
<anny1> go ahead Daniel 
<Lonewolf> the rules apply 
<Lonewolf> ok anny 
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<Mooooooo> AMC (Arthrogryposis Multiplex Congenita) is a term 
    describing the presence of multiple joint contractures at 
    birth. A contracture is a limitation in the range of 
    motion of a joint. 
<Mooooooo> In some cases, few joints maybe affected and the 
    range of motion may be nearly normal. In the classic case 
    of Arthrogryposis, hands, wrists, elbows, shoulders, hips, 
    feet, and knees are affected. In the most severe cases, 
    nearly every body joint may be involved, including the jaw 
    and back. Frequently, the joint contractures are accompanied 
    by muscle weakness which further limits movement. 
<Mooooooo> No, it doesn't hurt. 
<anny1> hi everyone 
<Kark> lol 
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<anny1> AMC IS CAUSED BY: 
<anny1> Anything which prevents normal joint movement before 
    birth can result in joint contractures 
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<anny1> yes lw 
<Lonewolf> as in like a small womb? 
<anny1> there are 4 causes of amc and i will try to list 
    them 
<Lonewolf> ok sorry 
<anny1> 1) Muscles do not develop properly (atrophy). In 
    most cases, the specific cause for 
<anny1> muscular atrophy cannot be identified. 
<anny1> 2) There is not sufficient room in the uterus for 
    normal movement. For example, the 
<anny1> mother may lack normal amount of amniotic fluid, or 
    have an abnormally shaped uterus. 
<anny1> this is what you mentioned lw 
<anny1> 3) Central nervous system and spinal cord are 
    malformed. 
<anny1> 4) Tendons, bones, joints or joint linings may 
    develop abnormally. For example, tendons 
<anny1> may not be connected to the proper place in a 
    joint 
<anny1> does anyone here with amc know their specific 
    cause? 
<Mooooooo> no idea, but my sister has it too 
<Kark> I wasn't told that by doc 
<anny1> my cause is the neurological type 
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<anny1> lily 
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<Lily> are some causes genetic, then? 
<anny1> kark 
<Kark> I didn't know there were diffferent types till 
    recently and I have it, you would think I would know 
<anny1> i think a few cases are but not most 
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<WonderW-> can there be a combination of the 4 causes that 
    causes it, or is it usually one? 
<anny1> i suppose there is a possibility of diff caues in 
    one person but not likely 
<anny1> kark 
<camille> can anything be done to help 
<Mooooooo> stretching 
<anny1> thanks cami next section is the treatment 
<anny1> becky 
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<Kark> I get the impression that they have found common 
    situations in people that have it to come up with the 4 
    typs but I think they are really sure what causes it 
<Becky19> Does anyone know, how common is AMC? 
<anny1> i think i read that it is one in every 3000 
    births but am not sure 
<WonderW-> is there a difference in manifestation between 
    those 4 types like with CP? 
<anny1> Physical therapy has proven very beneficial in 
    improving muscle strength and the range of motion of 
    affected joints 
<amc_Roy> I've heard that there are 200 with AMC in 
    California, which has about 50 million people in it 
<Mooooooo> there were 3 in my home town 
<anny1> yes WW some physical, some neurological some genetic 
<Becky19> so a bit more rare than some other disabilities, 
    then? 
<amc_Roy> yes 
<anny1> becky 
<Becky19> Is it progressive, or does it pretty much stay 
    the same? 
<anny1> it is not progressive, but there are things that 
    cancomplicate it like arthritis 
<anny1> becouse of deformed joints 
<anny1> rock 
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<anny1> rock 
<ROCK-> what are the first signs 
<ROCK-> yes 
<anny1> it is noticed at birth due to deformaity of joints 
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<anny1> kark 
<Woz> to join just type like you normaly would 
<ROCK-> ok 
<Kark> Arthrogryposis is non-progressive. That is, it does 
    not worsen with age. Furthermore, with physical therapy and 
    other available treatments, substantial improvement in 
    function is normally possible. Most people with 
    Arthrogryposis are of normal intelligence and are able to 
    lead productive, independent lives as adults 
<anny1> thanks kark 
<anny1> now lets talk treatment 
<anny1> Physical therapy has proven very beneficial in 
    improving muscle strength and the range of motion of 
    affected joints 
<anny1> Splints can be made to augment the stretching 
    exercises to increase range of motion. Casting is often 
    used to improve foot position. 
<anny1> roy 
<amc_Roy> does anyone know if continued treatment would 
    benefit older persons with amc 
<amc_Roy> I'm 44 
<anny1> kark 
<Kark> What are splints, are they like braces? 
<anny1> i don't know anyone else know about splints or 
    treatment after adulthood 
<anny1> becky 
<Becky19> This might be a dumb question, but why is it 
    abbreviated amc? 
<Kark> and I never had treatments till I was older and 
    stretching and light exersice with light weights help 
<anny1> arthrogryposis multiplex congenita 
<amc_Roy> thanks Karen 
<Becky19> ahhh...thank you 
<anny1> lw 
<Kark> oooops 
<Lonewolf> I would think some stretching would improve the 
    joints at anytime 
<Lonewolf> and a splint is kinda like a firmer brace 
<anny1> thanks lw 
<Lonewolf> just not as much in older age 
<anny1> 2. What type of therapies have you had and were 
    they helpful? 
<Kark> I had some treatments real young surgery, I ment 
    continously I didn't have treatments 
<anny1> Surgery should be viewed as a supportive measure to 
    other forms of treatment when they have achieved their 
    maximum result 
<WonderW-> contractions are common with CP as well, they 
    don't really help contractures already there, but help 
    prevent others 
<Mooooooo> mom stretched me 
<WonderW-> contractures 
<anny1> i never had any therapy just surgery and casting 
<anny1> Surgery should be viewed as a supportive measure to 
    other forms of treatment when they have achieved their 
    maximum result 
<ROCK-> did it help,anny? 
<anny1> yes rock put one hip back corrected feet to some 
    extent 
<anny1> Less frequently, surgery is required on knees, hips, 
    elbows and wrists to achieve better position or greater 
    range of motion. 
<WonderW-> did they reset your hip? 
<anny1> yes they did one and tried the other 2 times but 
    it is cronically dislocated 
<WonderW-> did that reduce your mobility? 
<WonderW-> I ask because my hip has a contracture 
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<anny1> no not really 
<WonderW-> ok 
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<WonderW-> thanks 
<anny1> it rides on the out of the socket and makes one 
    leg longer than the other 
<anny1> kark 
<Kark> I have both hips dislocated knees mostly locked, 
    club feet and hands and scoliosis 
<Kark> and onle leg is longer for me too 
<anny1> i don't have contractures but legs only bend to a 
    sitting position 
<Kark> but they haven't correct w/hip surgery 
<Kark> so your muscle are effect not joints? 
<anny1> do you use a chair kark? 
<Kark> I use crutches 
<anny1> muscles are weak 
<anny1> moooooooo what about u? 
<Mooooooo> hmmm 
<anny1> crutches? 
<Mooooooo> legs are bent 
<Mooooooo> about 10% 
<Mooooooo> cant kneel further than sitting position 
<Mooooooo> affects eyes 
<Mooooooo> and hands 
<Mooooooo> can open hands all the way 
<Mooooooo> cant 
<Mooooooo> dislocated internal organs 
<Mooooooo> no surgeries for AMC but 8 surgeries for other 
    stuff 
<anny1> lw 
<judi> what organs? 
<Mooooooo> lungs are much lower 
<anny1> interesting 
<Mooooooo> no crutches 
<Mooooooo> when in shape, i can walk 20/30 miles a day 
<Mooooooo> mountain climbing 
<WonderW-> is that what sometimes makes it hard for you to 
    breathe? 
<anny1> roy how does amc affect you? 
<Mooooooo> yeah 
<anny1> kark? 
<WonderW-> I didn't know that, nothing like sharing :) 
<Kark> Mooooooo answered in last statement but how about 
    you HelloKit? 
<amc_Roy> effects arms, legs, wrists, use wheelchair for 
    distance, but walk in apartment, no crutches, they were 
    more of a hindrance, legs only then about 10% 
<amc_Roy> so I swing legs to walk 
<HelloKit> huh? (sorry, distracted tonight...) 
<anny1> kit how does amc affect you? 
<HelloKit> ummm 
<anny1> movement etc 
<HelloKit> no deltoids (the muscle that pads the shoulder), 
    shoulders tight, no biceps and very little triceps, left 
    elbow bends about 90 degrees, right elbow about 20... both 
    only passively (obviously since i have no biceps) 
<HelloKit> ... 
<Kark> Sorry if I put you on the spot 
<HelloKit> hands curled under (sometimes referred to as club 
    hands), all leg joints tight, lots of pops and crackles, 
    mild club feet... 
<HelloKit> and also a jaw contracture, sort of like a 
    crossbite, makes chewing meat difficult sometimes 
<anny1> judi 
<judi> can u uncurl hands 
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<HelloKit> a lot more than when i was a baby, yes, but 
    they are still at about a 20 degree angle, which works 
    better for me than straight wrists would since i have so 
    little strength 
<anny1> cami 
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<camille> and you say this doesn't hurt ? 
<anny1> not for me except for arthritis which is not a 
    ral part of the amc 
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<anny1> kark 
<Kark> Uncurling relaxes the muscles which takes more effort 
    to tighten them, with weak muscles the extra effort is a 
    disadvantage 
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<Kark> Uncurling relaxes the muscles which takes more effort 
    to tighten them, with weak muscles the extra effort is a 
    disadvantage 
<Kark> ooops 
<anny1> has anyone had aditional problems associated with 
    ageing 
<anny1> roy 
<Mooooooo> a tummy that wont quit 
<amc_Roy> broke arm 2 yrs bookago 
<amc_Roy> ago, hasn't been same sence 
<anny1> carly 
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<anny1> kit 
<HelloKit> i get a lot of shooting pains, etc. that just 
    seem to be for the sake of making me miserable... i.e. 
    they don't indicate anything actually wrong... i attribute 
    them to possible nerve damage which may have resulted from 
    whatever it was that caused my amc 
<Adopmom3> what is the topic 
<Mooooooo> AMC , guest host, ANNY!!!!!!!!!!!! 
<anny1> lil 
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<Lily> do bones break more easily without muscles to 
    protect them? 
<anny1> hmmmmmm 
<anny1> kit 
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<HelloKit> not sure about that but i know they definitely 
    break due to lack of flexibility... i've broken my arm 3 
    times trying to catch myself when falling, since elbows 
    don't bend... 
<HelloKit> finally learned to keep arms at my sides when 
    falling, lol 
<anny1> ouch kit 
<anny1> roy 
<amc_Roy> don't think they brke more, just problem in 
    healing 
<amc_Roy> braake 
<anny1> i have not had any bones brake 
<amc_Roy> kit, I know what you mean on falling 
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<Adopmom3> what would cause the bones to break more is the 
    lack of ability for things like calcium etc to enter 
<Adopmom3> exercise aids in the ability for these things to 
    cross the barriers 
<Kark> I have been lucky, nock on wood, no broken bones 
<anny1> sometimes the shear number of fall could account 
    for more bones braking 
<amc_Roy> knock 
<WonderW-> lol 
<Kark> ooops 
<anny1> i found the cause of my amc 
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<anny1> it is becouse my brain did not develop as it was 
    supposed to in avery early stage was what i was told by 
<anny1> doctors after an mri 
<judi> is that it anny? 
<anny1> well anyone else have any comments or questions 
<Kark> I just wish I could reach my feet 
<wacky> Yea anny I have one 
<anny1> yes wacky 
<judi> I want to thank anny for an excellent presentation 
<judi> go on bri 
<anny1> thanks judi 
<amc_Roy> my mom thinks it's because she was 43 in 1954 
    win I was born, she figures it was her age 
<wacky> Most ppl I know w/ AMC are w/c users what percent 
    are actually able to walk that have amc 
<Kark> Same age for my mom w/me too 
<anny1> my mom was 42 
<amc_Roy> hmmmm 
<anny1> don't know wacky i walk 
<wacky> ok 
* HelloKit is only a part-time w/c user, no clue 
    percentage-wise... 
<wacky> most I know cant 
<Adopmom3> so does maternal age have a none affect 
<wacky> thanks kit 
<Kark> 50% walk w/out aides 
* amc_Roy also part time wheelchair user 
<Kark> 25% w/wheelchairs 
* judi gives anny round of applause 
<wacky> ok another question 
<anny1> thanks judi 
<atrpilot1> great job anny!!! 
<camille> yes very good anny 
<judi> Thanks everyone for coming 
<Kark> Yes very good anny 
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<Woz> thanks anny 
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<judi> and esp thank everyone who was kind enough to 
    follow the rules 
<Kark> stats from resent survey 
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<anny1> thanks every body for participating 
<Lily> very well done, anny:) 
<MsAmazin> sorry we missed most of it 
<Woz> yup 
<judi> exceptional job girl 
<wacky> me too anny 
<judi> yes rock 
<anny1> awwwww 
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<Becky19> great job, anny 
<anny1> see ya in disabled 
*** LOG CLOSED: Wed Apr 28 12:01:38 1999