Hi Everyone!
 
I

--- On Fri, 1/1/10, Ilyce <ictreger@...> wrote:


From: Ilyce <ictreger@...>
Subject: [Adults AMC] HAPPY NEW YEAR!
To: amc_adults@yahoogroups.com
Date: Friday, January 1, 2010, 1:19 AM


 



WANTED TO WISH EVERYONE A HAPPY NEW YEAR!











[Non-text portions of this message have been removed]

Hi Everyone!
 
Sorry for that blooper! I wanted so wish all the AMC'ers a Happy and blessed new
year. Wanna wish all of the you THE VERY BEST that life has to offer.
 
Morne

--- On Fri, 1/1/10, Ilyce <ictreger@...> wrote:


From: Ilyce <ictreger@...>
Subject: [Adults AMC] HAPPY NEW YEAR!
To: amc_adults@yahoogroups.com
Date: Friday, January 1, 2010, 1:19 AM


 



WANTED TO WISH EVERYONE A HAPPY NEW YEAR!











[Non-text portions of this message have been removed]

Its now time to Re-new AMCSI Membership (or become a member)
Click here to apply for annual membership to AMCSI ~~
https://www.formspring.com/forms/?578046-azDXdQGUmr
If for any reason you cant fill out the online application, contact
bod@...

** PLEASE NOTE, AMCSI's membership Year is from January- December.**
*......*We DO NOT PRO RATE MEMBERSHIPS**

HAPPY NEW YEAR ALL!
We had a very fun, exciting, & memorable 2nd year for Arthrogryposis Multiplex
Congenita Support, Inc & want to thank all for their support!!

Help us make 2010 bigger & better!

A few new "perks" for our PAID Members...

~annual newsletter(s) with 2010 AMCSI Magnet calender

~% off AMCSI online store (%10 Ind. %15 Fam, %20 for all others. A 1 time coupon
(will besen to email address)

~ first TWO weeks the Convention registration & hotel info wll be available to
AMCSI Members ONLY

~ all major announcements about AMCSI will first be made avaliable to our
members then to the general public


Dear Friends,

Beginning January 1, 2010, and as written in our bylaws, the Board of Directors
of Arthrogryposis Multiplex Congenita Support, Inc., a 501(C)3 Organization
registered with the United States Internal Revenue Service, will be asking that
the members of our online support group to consider becoming a financially
vested member of Arthrogryposis Multiplex Congenita Support, Inc.

Because we are an all-volunteer Board of Directors; we receive no pay, and we
work very hard to keep all overhead expenses to a minimum
With the explosive and exciting growth that our organization has experienced in
the past three years, our cost of operation has also increased. Any dues
collected will fund continued maintenance and yearly fees of our message boards,
& to fulfill our mission & vision statements.* A very small amount will be used
for administrative overhead such as postage, printing, etc. A monthly accounting
will be available online, so members will be able to see, at their convenience,
exactly how dues are spent.

Please remember that our online message boards will remain FREE, and they will
continue to be available FREE to any person touched by AMC. Convention will also
remain Free and open to all.

Tax deductible Membership levels:

Individual: $10.00 (USD)
Anyone interested may become a member by completing an application and paying
annual dues. Such members shall have voting privileges and are eligible to hold
an office.

Family: $15.00 (USD)
Family membership is obtained upon application and is open to any family unit
living in the same household. Family members 18 years and older shall have
voting privileges and are eligible to hold an office. Each paid member over the
age of 18 shall have ONE (1) vote, with a maximum of two (2) votes per paid
family membership. When there is only one (1) adult member of a family, that
family membership shall have ONE (1) vote. No paid member shall be entitled to
more than ONE (1) vote.

PERSONAL PATRON : $50.00(USD)
Individual members 18 years or older upon application and payment of annual dues
of $50.00(USD) or more, shall have voting privileges and are eligible to hold an
office. Individual Personal Patron has one(1) vote.

FAMILY PATRON : $50.00(USD)
Family members 18 years or older upon application and payment of annual dues of
$50.00(USD) or more, shall have voting privileges and are eligible to hold an
office. Family Patrons have two(2) votes. Each paid member over the age of 18
shall have ONE (1) vote, with a maximum of two (2) votes per paid family
membership. When there is only one (1) adult member of a family, that family
membership shall have ONE (1) vote. No paid member shall be entitled to more
than ONE (1) vote.

LIFETIME : Individual may obtain Lifetime membership by a single donation of
$500.00(USD) or more. Lifetime Members are eligible to hold office and shall
have the same voting privileges as a individual membership, after they have
passed their 18th birthday.


Corporate:
Any business or civic organization interested in the advancement of this
association may become a benefactor upon application and an annual donation of
$100 or more. This membership offers privileges of voting.

Patron:
Anyone interested in support and encouragement of this association may obtain a
patron membership upon application and annual donation of $50 or more. This
membership offers privileges of voting.

With your tax-deductible contribution, you will receive an Arthrogryposis
Multiplex Congenita Support, Inc., membership card and voting privileges.

You DO NOT need to become a member of Arthrogryposis Multiplex Congenita
Support, Inc. to have continued access to our online support group or to attend
our annual convention. We do not want anyone to feel dues are required to
maintain standing on the boards.

Again, please consider becoming a financially vested member of Arthrogryposis
Multiplex Congenita Support, Inc. We need your help to continue to offer our
current programs as well as to create new programs in the future.

if you have any questions or concerns, feel free to email bod@...
Click here to apply~~ https://www.formspring.com/forms/?578046-azDXdQGUmr

With Warm Regards,
Board of Directors, Arthrogryposis Multiplex Congenita Support, Inc

*Mission Statement:
To provide and encourage more understanding and mutual support among anyone
affected with the diagnosis of
Arthrogryposis Multiplex Congenita (AMC).
To create a higher standard of AMC awareness by means of Conventions, Meetings,
and Studies.
*Vision Statement:
To provide educational material to new parents, or soon-to-be parents regarding
the diagnosis of Arthrogryposis
Multiplex Congenita (AMC).
To provide a resource of information to the medical field to include but not
limited to occupational therapists, physical
therapists to assist them in the treatment of a child or person with the
diagnosis of AMC


~Theresa Lucas
http://www.theresalucas.com

Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator


[Non-text portions of this message have been removed]

Hi all

I'm new to this group, and new to AMC. I'm a 37 y.o. Danish female who was
diagnosed with AMC about 6 months ago.
I still haven't had the genetic tests to determine which type of AMC I have but
it is suspected that the type is "Distal B" and I await being called in for
tests to confirm or disprove this.

As such I have no problem with the AMC diagnosis - it's actually a relief to
have confirmation of me not imagining all of my "illnesses" and that there's a
connection between them.

My problem is that it is hard to find information of adults getting this
diagnosis, especially in such a small country as Denmark. I can find a lot of
information of adults that have had the diagnosis since childhood but
unfortunately my situation is somewhat different since it's a bit late to start
the therapy that one usually would with a child. By now my joints are positioned
worse now than when I was a child because noone knew that I had AMC and that I
could have been helped with therapies of different kinds.

I have a couple of other health issues to take into consideration (a hip
replacement - that doesn't work as well as it should - due to Legg Calve Perthe
and scheuermanns disease in both the upper and lower back) so I have to be
really carefull with any kind of sports or therapies, which is why I'm looking
for any kind of information of adults getting diagnosed with AMC.
Can anyone in the forum help me with links to or information about this?

Helle-Karina

Hi there, wow that is late to be diagnosed.  When you were a child did you
have contractures and muscle weakness?  If so even though there was no
diagnosis, did you have any physio?  I too had a hip replacement that did
not work out very well either.  I am really annoyed that I went ahead and
had it done.  I am 50 and use a wheelchair, work, live on my own, I also
have scoliosis which is part of AMC for a lot of people...Welcome to the
Group!!  It is hard to find doctors who know a lot about AMC in adults.  I
basically see orthopaedic surgeons, neurologists and physiatrists on a
regular basis, but none of these are specific AMC doctors..same as a child
here in Vancouver BC< the ortho surgeons, physiatrists worked with all
disability groups..



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of daizyrina
Sent: January-15-10 12:19 PM
To: amc_adults@yahoogroups.com
Subject: [Adults AMC] New to AMC and the group





Hi all

I'm new to this group, and new to AMC. I'm a 37 y.o. Danish female who was
diagnosed with AMC about 6 months ago.
I still haven't had the genetic tests to determine which type of AMC I have
but it is suspected that the type is "Distal B" and I await being called in
for tests to confirm or disprove this.

As such I have no problem with the AMC diagnosis - it's actually a relief to
have confirmation of me not imagining all of my "illnesses" and that there's
a connection between them.

My problem is that it is hard to find information of adults getting this
diagnosis, especially in such a small country as Denmark. I can find a lot
of information of adults that have had the diagnosis since childhood but
unfortunately my situation is somewhat different since it's a bit late to
start the therapy that one usually would with a child. By now my joints are
positioned worse now than when I was a child because noone knew that I had
AMC and that I could have been helped with therapies of different kinds.

I have a couple of other health issues to take into consideration (a hip
replacement - that doesn't work as well as it should - due to Legg Calve
Perthe and scheuermanns disease in both the upper and lower back) so I have
to be really carefull with any kind of sports or therapies, which is why I'm
looking for any kind of information of adults getting diagnosed with AMC.
Can anyone in the forum help me with links to or information about this?

Helle-Karina





[Non-text portions of this message have been removed]

Hi Patty

Thanks for your answer.

As a child (from age 3 til age 6) I was in a wheel chair due to a hip dicease
called Legg Calve Perthe, and I guess that is why muscle weakness and the fact
that I have never had very flexible joints weren't given a second though. All
though my present physician and I wonder how come things like stiff joints in
four fingers, missing joints in toes and a couple of other things never caused
my previous doctors to do further exams.

As I have gotten older my "problems" have gotten worse and I started being a bit
"bitchy" at the doctor's in order to get examined from A to Z to find out what
was wrong. I kept telling myself that it couldn't be right that one person
should have that many physical problems and that they weren't connected.

It turned out that some members of my extended family (I think they're second
cousins of mine) had the AMC diagnosis so after a lot of research on AMC I
convinced my family doctor to refer me to be examined. It's been a regular
tug-of-war to even find out where to be examined - because I'm an adult and that
there aren't any AMC-experts in Denmark - but after about a year all I need now
are genetics tests to specify the type of AMC.

I suppose that my daily pains, endurance problems and limited range of motion in
most joints (feet, toes,ancles, knees, hips, back, elbows, shoulders, wrists,
fingers and neck) has worsent though the years because I haven't had any physio
therapy because I didn't have a diagnosis. I believe that the "outcome" and how
one feels as an adult with AMC depends quite a lot on how it was treated in the
early years. I am convinced that I would not be this "stiff" and wouldn't have
as much pain nowadays had I had physio therapy, water therapy and so on as a
child. But I suppose that noone really knows if that is true since it's never
really been proven and what works is different for individual.

It seems that AMC runs in my family but just haven't even been diagnosed until
recently. I guess that the good thing about me pushing to get a diagnosis is
that it can help future kids in the family to avoid the problems I've had not
knowing that I have AMC.
It's strange though, they say that it usually isn't heredity and that it is very
rare if it is the hereditary kind, but in my family we can count at least 17
(living) people that appear to have it in different degrees. ("Medical miracle"
I guess that had there been experts i Denmark they would love to get their hands
on this special case *LOL*)

I guess that it is very very rare to be given the diagnosis this late in life -
and since it's a rare disease I suppose that I am looking for information that
just doesn't exist. I just hate the fact that I can't be told what to expect as
I age and that I will have to settle for the fact that the doctors as well as I
will have to learn about the problems as they come...

Helle-Karina



--- In amc_adults@yahoogroups.com, "Patty Clarke" <pelclarke@...> wrote:
>
> Hi there, wow that is late to be diagnosed.  When you were a child did you
> have contractures and muscle weakness?  If so even though there was no
> diagnosis, did you have any physio?  I too had a hip replacement that did
> not work out very well either.  I am really annoyed that I went ahead and
> had it done.  I am 50 and use a wheelchair, work, live on my own, I also
> have scoliosis which is part of AMC for a lot of people...Welcome to the
> Group!!  It is hard to find doctors who know a lot about AMC in adults.  I
> basically see orthopaedic surgeons, neurologists and physiatrists on a
> regular basis, but none of these are specific AMC doctors..same as a child
> here in Vancouver BC< the ortho surgeons, physiatrists worked with all
> disability groups..
>
>
>
> Patty.
>
>
>
> From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
> Behalf Of daizyrina
> Sent: January-15-10 12:19 PM
> To: amc_adults@yahoogroups.com
> Subject: [Adults AMC] New to AMC and the group
>
>
>
>
>
> Hi all
>
> I'm new to this group, and new to AMC. I'm a 37 y.o. Danish female who was
> diagnosed with AMC about 6 months ago.
> I still haven't had the genetic tests to determine which type of AMC I have
> but it is suspected that the type is "Distal B" and I await being called in
> for tests to confirm or disprove this.
>
> As such I have no problem with the AMC diagnosis - it's actually a relief to
> have confirmation of me not imagining all of my "illnesses" and that there's
> a connection between them.
>
> My problem is that it is hard to find information of adults getting this
> diagnosis, especially in such a small country as Denmark. I can find a lot
> of information of adults that have had the diagnosis since childhood but
> unfortunately my situation is somewhat different since it's a bit late to
> start the therapy that one usually would with a child. By now my joints are
> positioned worse now than when I was a child because noone knew that I had
> AMC and that I could have been helped with therapies of different kinds.
>
> I have a couple of other health issues to take into consideration (a hip
> replacement - that doesn't work as well as it should - due to Legg Calve
> Perthe and scheuermanns disease in both the upper and lower back) so I have
> to be really carefull with any kind of sports or therapies, which is why I'm
> looking for any kind of information of adults getting diagnosed with AMC.
> Can anyone in the forum help me with links to or information about this?
>
> Helle-Karina
>
>
>
>
>
> [Non-text portions of this message have been removed]
>

Ok, here is the newest Arthrogryposis Multiplex Congenita Support, Inc.
Membership map!




We now have a grand total of 184 paid members!! Who will be # 200??????
  Jan is Membership drive, if Arthrogryposis Multiplex Congenita has touched your
life in some way,
PLEASE consider becoming a member of this growing National non Profit
Organization!!
go to: https://www.formspring.com/forms/?578046-azDXdQGUmr


~Theresa Lucas
http://www.theresalucas.com
Arthrogryposis Multiplex Congenita Support, Inc. ~ President
http://www.amcsupport.org
Art Association of Madison County, Inc. ~ Student Exhibition Coordinator
http://www.studentartexhibition.webs.com


[Non-text portions of this message have been removed]

The World Institute on Disability invites students & their circle of support to
participate in a focus group discussion about youth with disabilities and their
benefits. We are redesigning our school and work website calculator
(www.db101.org). We want  input! Tell us your concerns about life planning and
addressing gaps in information when seeking employment for yourself or someone
you know.

Focus groups (FG) will take about 2 hours, and have a maximum of 8 participants
in each focus groups, ages 16-28 and their circle of support. This will take
place on February 18 & 19 at the World Institute on Disability.

Focus Group Blocks & Time:
World Institute on Disability
510 16th St. 2nd Fl.
Oakland, CA 94612

Thursday, February 18, 4-6pm:
16-22 yr olds

Thursday, February 18, 7-9pm:
23-28 yr olds

Friday, February 19, 7-9pm:
Circle of support: Family members, teachers, service providers

Participants will each receive a $50 VISA gift card.

  We encourage youth and their circle of support from all backgrounds and
different types of disability to participate. We are especially seeking those
who are determined by Social Security as disabled, but encourage those who are
not determined to still contact us. We want to ensure that when redesigning our
calculator we have an inclusive process.

If you (or someone you know) are interested, please contact Silvia Kim, Projects
Coordinator at the World Institute on Disability no later than February 10.
Please provide the following information:

Which focus group will you be attending?

Please select which best describes you:

Youth with a disability

Family member of a child with a disability

Friend of person with a disability

Service Provider

Teacher

Other:

Thank you,

Silvia Kim

Projects Coordinator

California Work Incentives Initiative

World Institute on Disability

www.db101.org

Phone: (510) 251-4325

Fax (510) 763-4109

Silvia@...

Hello all.  I am 55 and have had arthrogroposis all my life (obviously :-) ).  
I in in Massachusetts and have not bother to do much since my last surgery when
I was 17.    I am starting to realize I should seek out some medical
professional to touch bases with so I started looking around for options.

So my 1st question.. does anyone have any medical professionals in the Boston
Area or Southern NH you would recommend I make contact with?

Just to round out the biography ..
- Mostly affected in my lower extremeties.. however I am affected everywhere. ..
I walk with 2 cains.. I probably should use crutches.
- Graduated college in 77,  maried in 78,  still married to the same woman, 
employed as an SAP Basis Consultant (computers),  4 children ages 14 to 24 (none
of them have Arthrogryposis,  all of them are great fun!).
- have been able to drive most cars, and love standard transmissions,    but my
wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
unfair)..
- Been a pilot since 82, but gave up flying to have kids.. I hope I'll be able
to fly again soon .. but it is not inexpensive.
- Physically I have let myself go, and I need to get back into shape before it
is too late.
..  I do hand cycling.   have dome some cross country skiing with an adaptive
sled, and just started to learn to ski downhill on a mono ski.

Am active in my local church, and am evengelical.


Enough about me.    Just thought I'd get as much as i can out of the way 1st.
I am looking forward to hearing from others ..  and I hope people can answer my
question about professionals in the area.    I have to be honest and say that I
am pretty busy .. so I am not likely to get involved in long and deep and
frequent commuications..  but at the same time I am looking forward to expanding
my connections to fellow arthrogrypotics.

thanks so much

Steve Pustell

Hello Steve,

I'm Tribbey and I'm 53 yrs old, my Arthrogryposis affects all four of my limbs,
have very little use of hands, so I do most everything with my mouth; writing,
typing, cooking ec....  Still able to walk, but do it mostly indoors.
I'm a retired Purchasing Agent for the US Navy, married 33yrs, one daughter and
one grandson.
You asked about medical professionals out in your area, well sad to say no
matter where you happen to live now-days, being an Adult with AMC does not seem
to matter to the medical community.  Being a child with AMC is great because
you're offered all kinds of medical treatments, but now that you've grown up
forget it.  I'm not just saying this to be negative, but most other AMC Adults
will tell you the same thing, about lack of medical care for adults with AMC. 
They should really be ashamed of themselves too.

Tribbey        AMC Lady in Sequim Washington


--- In amc_adults@yahoogroups.com, "spustell" <pustell_se@...> wrote:
>
> Hello all.  I am 55 and have had arthrogroposis all my life (obviously :-) ).
I in in Massachusetts and have not bother to do much since my last surgery when
I was 17.    I am starting to realize I should seek out some medical
professional to touch bases with so I started looking around for options.
>
> So my 1st question.. does anyone have any medical professionals in the Boston
Area or Southern NH you would recommend I make contact with?
>
> Just to round out the biography ..
> - Mostly affected in my lower extremeties.. however I am affected everywhere.
..   I walk with 2 cains.. I probably should use crutches.
> - Graduated college in 77,  maried in 78,  still married to the same woman, 
employed as an SAP Basis Consultant (computers),  4 children ages 14 to 24 (none
of them have Arthrogryposis,  all of them are great fun!).
> - have been able to drive most cars, and love standard transmissions,    but
my wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
unfair)..
> - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be able
to fly again soon .. but it is not inexpensive.
> - Physically I have let myself go, and I need to get back into shape before it
is too late.
> ..  I do hand cycling.   have dome some cross country skiing with an adaptive
sled, and just started to learn to ski downhill on a mono ski.
>
> Am active in my local church, and am evengelical.
>
>
> Enough about me.    Just thought I'd get as much as i can out of the way 1st.
I am looking forward to hearing from others ..  and I hope people can answer my
question about professionals in the area.    I have to be honest and say that I
am pretty busy .. so I am not likely to get involved in long and deep and
frequent commuications..  but at the same time I am looking forward to expanding
my connections to fellow arthrogrypotics.
>
> thanks so much
>
> Steve Pustell
>

Hello Tribbey.

Thanks for your reply.    I think part of this (on the part of the medical
community) is because there is little more they can do to improve our condition
once we are adults.   I don't know about you, but my current issues are very
similar to just aging .. but since I started with much less.. I am deteriorating
at a much faster rate.   I have 'less distance to fall'.  so to speak.     I had
actually expected this which is why I haven't really had much to do with
specialists since my last treatment at 17.

But I have to believe that some of the therapies developed for sports related
injury to joints could help us retain what we have longer.


have to run now.   But again.  thank you for the reply.

God Bless

Steve P

--- In amc_adults@yahoogroups.com, "mrpeaches98382" <catpower@...> wrote:
>
> Hello Steve,
>
> I'm Tribbey and I'm 53 yrs old, my Arthrogryposis affects all four of my
limbs, have very little use of hands, so I do most everything with my mouth;
writing, typing, cooking ec....  Still able to walk, but do it mostly indoors.
> I'm a retired Purchasing Agent for the US Navy, married 33yrs, one daughter
and one grandson.
> You asked about medical professionals out in your area, well sad to say no
matter where you happen to live now-days, being an Adult with AMC does not seem
to matter to the medical community.  Being a child with AMC is great because
you're offered all kinds of medical treatments, but now that you've grown up
forget it.  I'm not just saying this to be negative, but most other AMC Adults
will tell you the same thing, about lack of medical care for adults with AMC. 
They should really be ashamed of themselves too.
>
> Tribbey        AMC Lady in Sequim Washington
>
>
> --- In amc_adults@yahoogroups.com, "spustell" <pustell_se@> wrote:
> >
> > Hello all.  I am 55 and have had arthrogroposis all my life (obviously :-)
).   I in in Massachusetts and have not bother to do much since my last surgery
when I was 17.    I am starting to realize I should seek out some medical
professional to touch bases with so I started looking around for options.
> >
> > So my 1st question.. does anyone have any medical professionals in the
Boston Area or Southern NH you would recommend I make contact with?
> >
> > Just to round out the biography ..
> > - Mostly affected in my lower extremeties.. however I am affected
everywhere. ..   I walk with 2 cains.. I probably should use crutches.
> > - Graduated college in 77,  maried in 78,  still married to the same woman, 
employed as an SAP Basis Consultant (computers),  4 children ages 14 to 24 (none
of them have Arthrogryposis,  all of them are great fun!).
> > - have been able to drive most cars, and love standard transmissions,    but
my wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
unfair)..
> > - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be
able to fly again soon .. but it is not inexpensive.
> > - Physically I have let myself go, and I need to get back into shape before
it is too late.
> > ..  I do hand cycling.   have dome some cross country skiing with an
adaptive sled, and just started to learn to ski downhill on a mono ski.
> >
> > Am active in my local church, and am evengelical.
> >
> >
> > Enough about me.    Just thought I'd get as much as i can out of the way
1st.     I am looking forward to hearing from others ..  and I hope people can
answer my question about professionals in the area.    I have to be honest and
say that I am pretty busy .. so I am not likely to get involved in long and deep
and frequent commuications..  but at the same time I am looking forward to
expanding my connections to fellow arthrogrypotics.
> >
> > thanks so much
> >
> > Steve Pustell
> >
>

Steve,

I live in Mass and would love to find a hand peddled bike. Could you give me the
info about purchasing one?  Thanks.  Maybe we can actually meet.
It's been a very long time since I have written here, and last time I was
probably living in CA and playing pool seriously.  I quit the game for now and
have been going back to college.  I'm happy to say that I am graduating this
May.  Wow, I can't believe it.
My body has been doing great since I begged my doctor to put me on methadone for
my pain.  I'm about 95 percent pain-free now and my life has changed.  I
love life so much more now that I can see (so to speak).
Up to date: Both my legs were affected with AMC, I still don't know what kind
tho, and have had 23 surgeries.  I have a total hip replacement, anckles are
fused, and my knees bend here and there.  I live alone with my cat Lily and I
can't see that changing anytime soon or at all.  Single for too long I guess. 
:)  Best news is I've gone 10 years without surgery...my dream came true, and
now my dream is for 15 years without surgery.

I have to continue to study for a big test coming up.  
Best wishes to everyone
 
tau
Tracy Ann




________________________________
From: spustell <pustell_se@...>
To: amc_adults@yahoogroups.com
Sent: Sat, February 20, 2010 1:52:38 PM
Subject: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying 'hello'

 
Hello Tribbey.

Thanks for your reply. I think part of this (on the part of the medical
community) is because there is little more they can do to improve our condition
once we are adults. I don't know about you, but my current issues are very
similar to just aging .. but since I started with much less.. I am deteriorating
at a much faster rate. I have 'less distance to fall'. so to speak. I had
actually expected this which is why I haven't really had much to do with
specialists since my last treatment at 17.

But I have to believe that some of the therapies developed for sports related
injury to joints could help us retain what we have longer.

have to run now. But again. thank you for the reply.

God Bless

Steve P

--- In amc_adults@yahoogro ups.com, "mrpeaches98382" <catpower@.. .> wrote:
>
> Hello Steve,
>
> I'm Tribbey and I'm 53 yrs old, my Arthrogryposis affects all four of my
limbs, have very little use of hands, so I do most everything with my mouth;
writing, typing, cooking ec.... Still able to walk, but do it mostly indoors.
> I'm a retired Purchasing Agent for the US Navy, married 33yrs, one daughter
and one grandson.
> You asked about medical professionals out in your area, well sad to say no
matter where you happen to live now-days, being an Adult with AMC does not seem
to matter to the medical community. Being a child with AMC is great because
you're offered all kinds of medical treatments, but now that you've grown up
forget it. I'm not just saying this to be negative, but most other AMC Adults
will tell you the same thing, about lack of medical care for adults with AMC.
They should really be ashamed of themselves too.
>
> Tribbey AMC Lady in Sequim Washington
>
>
> --- In amc_adults@yahoogro ups.com, "spustell" <pustell_se@ > wrote:
> >
> > Hello all. I am 55 and have had arthrogroposis all my life (obviously :-) ).
I in in Massachusetts and have not bother to do much since my last surgery when
I was 17. I am starting to realize I should seek out some medical professional
to touch bases with so I started looking around for options.
> >
> > So my 1st question.. does anyone have any medical professionals in the
Boston Area or Southern NH you would recommend I make contact with?
> >
> > Just to round out the biography ..
> > - Mostly affected in my lower extremeties. . however I am affected
everywhere. .. I walk with 2 cains.. I probably should use crutches.
> > - Graduated college in 77, maried in 78, still married to the same woman,
employed as an SAP Basis Consultant (computers), 4 children ages 14 to 24 (none
of them have Arthrogryposis, all of them are great fun!).
> > - have been able to drive most cars, and love standard transmissions, but my
wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
unfair)..
> > - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be
able to fly again soon .. but it is not inexpensive.
> > - Physically I have let myself go, and I need to get back into shape before
it is too late.
> > .. I do hand cycling. have dome some cross country skiing with an adaptive
sled, and just started to learn to ski downhill on a mono ski.
> >
> > Am active in my local church, and am evengelical.
> >
> >
> > Enough about me. Just thought I'd get as much as i can out of the way 1st. I
am looking forward to hearing from others .. and I hope people can answer my
question about professionals in the area. I have to be honest and say that I am
pretty busy .. so I am not likely to get involved in long and deep and frequent
commuications. . but at the same time I am looking forward to expanding my
connections to fellow arthrogrypotics.
> >
> > thanks so much
> >
> > Steve Pustell
> >
>




[Non-text portions of this message have been removed]

Hi Tracy,
    I live in NH and have AMC and recently have been looking for a hand bike
myself.  I went to this bike trial at UNH put on by Northeast Passage.  It was
really neat and I had the opportunity to try out several different types of
bikes to see which was best for me.  The folks there are very innovative and
help to fit you to a bike.  Its worth a shot. http://www.nepassage.org/ Hope
this helps with your search!  Congrats on the ten year mark!
Jen

--- On Sat, 2/20/10, TRACY ULRICH <tautracy@...> wrote:


From: TRACY ULRICH <tautracy@...>
Subject: Re: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying
'hello'
To: amc_adults@yahoogroups.com
Date: Saturday, February 20, 2010, 9:22 PM


 



Steve,

I live in Mass and would love to find a hand peddled bike. Could you give me the
info about purchasing one?  Thanks.  Maybe we can actually meet.
It's been a very long time since I have written here, and last time I was
probably living in CA and playing pool seriously.  I quit the game for now and
have been going back to college.  I'm happy to say that I am graduating this
May.  Wow, I can't believe it.
My body has been doing great since I begged my doctor to put me on methadone for
my pain.  I'm about 95 percent pain-free now and my life has changed.  I
love life so much more now that I can see (so to speak).
Up to date: Both my legs were affected with AMC, I still don't know what kind
tho, and have had 23 surgeries.  I have a total hip replacement, anckles are
fused, and my knees bend here and there.  I live alone with my cat Lily and I
can't see that changing anytime soon or at all.  Single for too long I guess. 
:)  Best news is I've gone 10 years without surgery...my dream came true, and
now my dream is for 15 years without surgery.

I have to continue to study for a big test coming up.  
Best wishes to everyone
 
tau
Tracy Ann

____________ _________ _________ __
From: spustell <pustell_se@iname. com>
To: amc_adults@yahoogro ups.com
Sent: Sat, February 20, 2010 1:52:38 PM
Subject: [Adults AMC] Re: New to the Group.. 55 yr old in MA.. saying 'hello'

 
Hello Tribbey.

Thanks for your reply. I think part of this (on the part of the medical
community) is because there is little more they can do to improve our condition
once we are adults. I don't know about you, but my current issues are very
similar to just aging .. but since I started with much less.. I am deteriorating
at a much faster rate. I have 'less distance to fall'. so to speak. I had
actually expected this which is why I haven't really had much to do with
specialists since my last treatment at 17.

But I have to believe that some of the therapies developed for sports related
injury to joints could help us retain what we have longer.

have to run now. But again. thank you for the reply.

God Bless

Steve P

--- In amc_adults@yahoogro ups.com, "mrpeaches98382" <catpower@.. .> wrote:
>
> Hello Steve,
>
> I'm Tribbey and I'm 53 yrs old, my Arthrogryposis affects all four of my
limbs, have very little use of hands, so I do most everything with my mouth;
writing, typing, cooking ec.... Still able to walk, but do it mostly indoors.
> I'm a retired Purchasing Agent for the US Navy, married 33yrs, one daughter
and one grandson.
> You asked about medical professionals out in your area, well sad to say no
matter where you happen to live now-days, being an Adult with AMC does not seem
to matter to the medical community. Being a child with AMC is great because
you're offered all kinds of medical treatments, but now that you've grown up
forget it. I'm not just saying this to be negative, but most other AMC Adults
will tell you the same thing, about lack of medical care for adults with AMC.
They should really be ashamed of themselves too.
>
> Tribbey AMC Lady in Sequim Washington
>
>
> --- In amc_adults@yahoogro ups.com, "spustell" <pustell_se@ > wrote:
> >
> > Hello all. I am 55 and have had arthrogroposis all my life (obviously :-) ).
I in in Massachusetts and have not bother to do much since my last surgery when
I was 17. I am starting to realize I should seek out some medical professional
to touch bases with so I started looking around for options.
> >
> > So my 1st question.. does anyone have any medical professionals in the
Boston Area or Southern NH you would recommend I make contact with?
> >
> > Just to round out the biography ..
> > - Mostly affected in my lower extremeties. . however I am affected
everywhere. .. I walk with 2 cains.. I probably should use crutches.
> > - Graduated college in 77, maried in 78, still married to the same woman,
employed as an SAP Basis Consultant (computers), 4 children ages 14 to 24 (none
of them have Arthrogryposis, all of them are great fun!).
> > - have been able to drive most cars, and love standard transmissions, but my
wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
unfair)..
> > - Been a pilot since 82, but gave up flying to have kids.. I hope I'll be
able to fly again soon .. but it is not inexpensive.
> > - Physically I have let myself go, and I need to get back into shape before
it is too late.
> > .. I do hand cycling. have dome some cross country skiing with an adaptive
sled, and just started to learn to ski downhill on a mono ski.
> >
> > Am active in my local church, and am evengelical.
> >
> >
> > Enough about me. Just thought I'd get as much as i can out of the way 1st. I
am looking forward to hearing from others .. and I hope people can answer my
question about professionals in the area. I have to be honest and say that I am
pretty busy .. so I am not likely to get involved in long and deep and frequent
commuications. . but at the same time I am looking forward to expanding my
connections to fellow arthrogrypotics.
> >
> > thanks so much
> >
> > Steve Pustell
> >
>

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Hi Steve, I have always been followed by orthopaedic surgeon as a child ad
now as an adult see regularly , adult orthopaedic surgeon, neurologist and
physiatrist.  I have never seen anyone who just sees people with AMC, since
there are no such specialty here in Vancouver, BC.  I did see a geneticist
one for an evaluation into what kind of AMC I had etc.  Most of the doctors
that I have seen and continue to see do see a number of people with AMC, so
there is a knowledge base but no one specializing in AMC only.



Patty.



From: amc_adults@yahoogroups.com [mailto:amc_adults@yahoogroups.com] On
Behalf Of spustell
Sent: February-16-10 3:21 PM
To: amc_adults@yahoogroups.com
Subject: [Adults AMC] New to the Group.. 55 yr old in MA.. saying 'hello'





Hello all. I am 55 and have had arthrogroposis all my life (obviously :-) ).
I in in Massachusetts and have not bother to do much since my last surgery
when I was 17. I am starting to realize I should seek out some medical
professional to touch bases with so I started looking around for options.

So my 1st question.. does anyone have any medical professionals in the
Boston Area or Southern NH you would recommend I make contact with?

Just to round out the biography ..
- Mostly affected in my lower extremeties.. however I am affected
everywhere. .. I walk with 2 cains.. I probably should use crutches.
- Graduated college in 77, maried in 78, still married to the same woman,
employed as an SAP Basis Consultant (computers), 4 children ages 14 to 24
(none of them have Arthrogryposis, all of them are great fun!).
- have been able to drive most cars, and love standard transmissions, but my
wife enjoys that she can drive an MG and i cannot!! (sigh.. life can be
unfair)..
- Been a pilot since 82, but gave up flying to have kids.. I hope I'll be
able to fly again soon .. but it is not inexpensive.
- Physically I have let myself go, and I need to get back into shape before
it is too late.
.. I do hand cycling. have dome some cross country skiing with an adaptive
sled, and just started to learn to ski downhill on a mono ski.

Am active in my local church, and am evengelical.

Enough about me. Just thought I'd get as much as i can out of the way 1st. I
am looking forward to hearing from others .. and I hope people can answer my
question about professionals in the area. I have to be honest and say that I
am pretty busy .. so I am not likely to get involved in long and deep and
frequent commuications.. but at the same time I am looking forward to
expanding my connections to fellow arthrogrypotics.

thanks so much

Steve Pustell





[Non-text portions of this message have been removed]

Hello everyone.
Tueday night after class I lost control of my car and ran into a telephone poll.
Totaled my car and broke my knee cap and my ankles are screwed up...can't walk
on them.  I'm still in the Hospital in the rehab section.  I'm not happy at
all.  I don't know what will happen with my schooling now.  Darnit, I can't
believe I'm in this situation...again.
Does anyone know to best way to heal a beat up fused ankle?  They want me to
walk with it, but it hurts too bad.  I don't know if that is the best answer.  I
think it would be best to let it heal more before applying weight on them.

Thank you for any solutions you might have.
 
tau
Tracy Ann

[Non-text portions of this message have been removed]

Hello Tracy Ann.    sorry to take so long to reply.   I've been a bit busy with
both work and life.

I have 2 great hand cycle resources to recomemnt

Scott at Bike-on is disabled himself and has one of the premire handcycle stores
and sites in the country.   AND he is located in RI so you can get there and
look at some of his stuff.   The web site is http://bike-on.com .   Don't be
scared at the prices.   Contact them and let them know what you can spend, and
they will help you look for used ones which might work.  Tell Scot I said 'Hi'
when you contact them.

Also.  Northeast passage (http://www.nepassage.org/) is a great program run out
of the U of NH in Durham.   They have lots of good equipment (not just
handcycles) that you can rent to learn how well it will work for you.    They
also run seasonal programs which feature the different sports the disabled can
particiapte in.

I just last week rented a cross country ski sled from them and went skiing with
my wife, and brother and his wife.    Hard work, but a fun time.  Their 'learn
to do' programs are fantastic.     In the spring they will have a big gathering
of handcycles so you can test and try and talk to people who do it.    I am
currently modifying my hand cycle with a conventional trike so my wife and I can
hook them together and get a tandem.   We hope to keep together more when
cycling.  If I get it all done before NE passage does their demo days I'll bring
it up there to show off the idea.

I have been trying mono-skiing as well (which is where we were over the weekend.
There is a really good program at mount Sunapee in NH and also at mount
Wachusett here in MA

Check out   www.abilityplus.org  and http://www.nehsa.org/.     The folks at
NEHSA took some movies of my training and when I get the links I'll send them
along.

We really had a lot of fun..  I know I am getting better at it because they let
me fall down all the time now.    :-)


So I am glad you are feeling better and interested in getting out there and
getting active ..    I hope this information has helped.

Steve P


--- In amc_adults@yahoogroups.com, TRACY ULRICH <tautracy@...> wrote:
>
> Steve,
>
> I live in Mass and would love to find a hand peddled bike. Could you give me
the info about purchasing one?  Thanks.  Maybe we can actually meet.
> It's been a very long time since I have written here, and last time I was
probably living in CA and playing pool seriously.  I quit the game for now and
have been going back to college.  I'm happy to say that I am graduating this
May.  Wow, I can't believe it.
> My body has been doing great since I begged my doctor to put me on methadone
for my pain.  I'm about 95 percent pain-free now and my life has changed.  I
love life so much more now that I can see (so to speak).
> Up to date: Both my legs were affected with AMC, I still don't know what kind
tho, and have had 23 surgeries.  I have a total hip replacement, anckles are
fused, and my knees bend here and there.  I live alone with my cat Lily and I
can't see that changing anytime soon or at all.  Single for too long I guess. 
:)  Best news is I've gone 10 years without surgery...my dream came true, and
now my dream is for 15 years without surgery.
>
> I have to continue to study for a big test coming up.  
> Best wishes to everyone
>  
> tau
> Tracy Ann
>
>
>
>

I have been lurking for about a month now. I wanted to make sure that family
members were really welcome to ask questions. I am in a spinal injury group and
some of the members there get real upset when outsiders dare to pose a
question,but it seems super friendly in here.

OK bit of backround, I have a spinal injury that I am doing well with, lucked
out and is pretty mobile most of the time,no pain no gain type of thing,but
thats why they created pain meds. I cannot climb well and I try anyway and when
I tire out I lose my legs again so I ride horse.
My fiance has AMC and he can stand and balance enough to get to his power chair
but cannot walk more then lets say from the house to the car. His left arm is
losing strength fast and he is losing what extension he had. His right arm is
amazingly strong. I know he is upset that I had been bounding off and riding
horse and spending hours in the badlands and he cannot join me. I have quit
riding pretty much and I really miss it. I would like to see if he could join
me. He cannot straddle a horse as his hips do not have that mobility to let him
sit mounted normally,and he would need back support as he cannot sit upright
without support
Does anyone know of anyone that can design and make a saddle that he could use?
I tried holding him and going bareback but I lack the lower leg grip that I need
for that or that would work for short jaunts. I really miss going out,but I feel
guilty having a pleasure that he cannot participate in.
My horse lies down on command so mounting is simple,he is basically a bomb proof
horse and one can hunt while riding, used to go deer hunting on horseback with
my brother before my fiance started getting upset about having to be left
behind.
I am hoping someone knows of someone, I would like to continue being able to
ride, its the one time when I can go freely where I used to be able to go using
the horses legs because I cannot use my own.
thanks all!
and thanks for letting me post!
zhinka

Tracy! I just wanted to say I'm so sorry to hear that happened to you. 
Ouch.  I am afraid I don't have any advice about the best way to heal.  I hope
you are doing ok. 

--- On Sun, 2/28/10, TRACY ULRICH <tautracy@...> wrote:


From: TRACY ULRICH <tautracy@...>
Subject: [Adults AMC] knees
To: "Arthrogryposis Group online" <amc_adults@yahoogroups.com>
Date: Sunday, February 28, 2010, 9:35 AM


 



Hello everyone.
Tueday night after class I lost control of my car and ran into a
telephone poll. Totaled my car and broke my knee cap and my ankles are screwed
up...can't walk on them.  I'm still in the Hospital in the rehab section. 
I'm not happy at all.  I don't know what will happen with my schooling
now.  Darnit, I can't believe I'm in this situation... again.
Does anyone know to best way to heal a beat up fused ankle?  They want me to
walk with it, but it hurts too bad.  I don't know if that is the best answer. 
I think it would be best to let it heal more before applying weight on them.

Thank you for any solutions you might have.
 
tau
Tracy Ann

[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

Oh Man Tracy the only thing I can suggest is to try a air brace that would
give it extra support on the ankle that might help....

Tracy Rae

-------Original Message-------

From: Brenda
Date: 3/11/2010 1:55:34 PM
To: amc_adults@yahoogroups.com
Subject: Re: [Adults AMC] knees


Tracy! I just wanted to say I'm so sorry to hear that happened to you.  Ouch
   I am afraid I don't have any advice about the best way to heal.  I hope
you are doing ok.

--- On Sun, 2/28/10, TRACY ULRICH <tautracy@...> wrote:

From: TRACY ULRICH <tautracy@...>
Subject: [Adults AMC] knees
To: "Arthrogryposis Group online" <amc_adults@yahoogroups.com>
Date: Sunday, February 28, 2010, 9:35 AM



Hello everyone.
Tueday night after class I lost control of my car and ran into a telephone
poll. Totaled my car and broke my knee cap and my ankles are screwed up..
can't walk on them.  I'm still in the Hospital in the rehab section.  I'm
not happy at all.  I don't know what will happen with my schooling now.
Darnit, I can't believe I'm in this situation... again.
Does anyone know to best way to heal a beat up fused ankle?  They want me to
walk with it, but it hurts too bad.  I don't know if that is the best answer
   I think it would be best to let it heal more before applying weight on
them.

Thank you for any solutions you might have.

tau
Tracy Ann

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]

Hi Tracy. I'm sorry to hear about your accident. Unfortunately I have no clue
about healing your ankle either. What does the doctor say about the
prognosis of your injuries?
 
Morne...

--- On Thu, 3/11/10, Tracy Rousar <mountaingirl32@...> wrote:


From: Tracy Rousar <mountaingirl32@...>
Subject: Re: [Adults AMC] knees
To: amc_adults@yahoogroups.com
Date: Thursday, March 11, 2010, 10:09 PM


 



Oh Man Tracy the only thing I can suggest is to try a air brace that would
give it extra support on the ankle that might help....

Tracy Rae

-------Original Message----- --

From: Brenda
Date: 3/11/2010 1:55:34 PM
To: amc_adults@yahoogro ups.com
Subject: Re: [Adults AMC] knees


Tracy! I just wanted to say I'm so sorry to hear that happened to you. Ouch
I am afraid I don't have any advice about the best way to heal. I hope
you are doing ok.

--- On Sun, 2/28/10, TRACY ULRICH <tautracy@verizon. net> wrote:

From: TRACY ULRICH <tautracy@verizon. net>
Subject: [Adults AMC] knees
To: "Arthrogryposis Group online" <amc_adults@yahoogro ups.com>
Date: Sunday, February 28, 2010, 9:35 AM



Hello everyone.
Tueday night after class I lost control of my car and ran into a telephone
poll. Totaled my car and broke my knee cap and my ankles are screwed up..
can't walk on them. I'm still in the Hospital in the rehab section. I'm
not happy at all. I don't know what will happen with my schooling now.
Darnit, I can't believe I'm in this situation... again.
Does anyone know to best way to heal a beat up fused ankle? They want me to
walk with it, but it hurts too bad. I don't know if that is the best answer
I think it would be best to let it heal more before applying weight on
them.

Thank you for any solutions you might have.

tau
Tracy Ann

[Non-text portions of this message have been removed]

[Non-text portions of this message have been removed]





[Non-text portions of this message have been removed]











[Non-text portions of this message have been removed]

I'd be interested in learning about this too! A few of my friends keep talking
about wanting to try out horseback riding, and I think it'd be cool to find a
way to make it work. My physical abilities are fairly similar to your fiance's
in that my hips don't open enough to straddle a horse and I need support to sit
up, but my balance is good enough to stand and walk short distances around my
apartment and at the office. I think it has something to do with my extensor
muscles being pretty strong, but the other muscles being weaker.

  I wonder if its possible to put some type of angled wedge thing on the seat
part a saddle? I've found if my hips are angled forward (imagine half
sit/standing on a low wall or bench)I can sit unaided. Plus being a little
elevated from the saddle might make needing to fully straddle the horse
unnecessary.
--- In amc_adults@yahoogroups.com, "zhinka aka otter_woman" <otter_woman@...>
wrote:
>
> I have been lurking for about a month now. I wanted to make sure that family
members were really welcome to ask questions. I am in a spinal injury group and
some of the members there get real upset when outsiders dare to pose a
question,but it seems super friendly in here.
>
> OK bit of backround, I have a spinal injury that I am doing well with, lucked
out and is pretty mobile most of the time,no pain no gain type of thing,but
thats why they created pain meds. I cannot climb well and I try anyway and when
I tire out I lose my legs again so I ride horse.
> My fiance has AMC and he can stand and balance enough to get to his power
chair but cannot walk more then lets say from the house to the car. His left arm
is losing strength fast and he is losing what extension he had. His right arm is
amazingly strong. I know he is upset that I had been bounding off and riding
horse and spending hours in the badlands and he cannot join me. I have quit
riding pretty much and I really miss it. I would like to see if he could join
me. He cannot straddle a horse as his hips do not have that mobility to let him
sit mounted normally,and he would need back support as he cannot sit upright
without support
> Does anyone know of anyone that can design and make a saddle that he could
use? I tried holding him and going bareback but I lack the lower leg grip that I
need for that or that would work for short jaunts. I really miss going out,but I
feel guilty having a pleasure that he cannot participate in.
> My horse lies down on command so mounting is simple,he is basically a bomb
proof horse and one can hunt while riding, used to go deer hunting on horseback
with my brother before my fiance started getting upset about having to be left
behind.
> I am hoping someone knows of someone, I would like to continue being able to
ride, its the one time when I can go freely where I used to be able to go using
the horses legs because I cannot use my own.
> thanks all!
> and thanks for letting me post!
> zhinka
>

Thank you so much for your kindness.  Here's the latest.

I'm at home and might be going crazy.

I did get an MRI, but won't get the results till Monday.  A neurologist came
to see me while I was in rehab and when I asked if she knew anything about
Arthrogryposis, she responded, "I didn't, but I do now!"  while she held up a
stack of printed material.  Finally I felt like someone understands me. She
assured me that I was right concerning my ankles; and that was not to stand on
them. She also told me that I might be looking at about 6 months of not walking
on them until the pain will just magically disappear. 
That 6 month pill is a hard pill to swallow, and being in a wheelchair is my
worst nightmare come true.  I know it's temporary, but I can't get past the
anger.
This Doctor I'm talking about, Dr. Upchurch, might be a good neurologist to ask
questions of.  She is smart and she wants to understand AMC, and it's been many
years since I've felt that way of a doctor.

I'm managing here with my Lily, cat, but the days are long and challenging to
maneuver around in...and a little lonely.

My best,
Tracy





As soon as
tau
Tracy Ann




________________________________
From: morne vanWyk <vanwyk.morne@...>
To: amc_adults@yahoogroups.com
Sent: Fri, March 12, 2010 1:35:29 AM
Subject: Re: [Adults AMC] knees

 
Hi Tracy. I'm sorry to hear about your accident. Unfortunately I have no clue
about healing your ankle either. What does the doctor say about the
prognosis of your injuries?
 
Morne...

--- On Thu, 3/11/10, Tracy Rousar <mountaingirl32@ sbcglobal. net> wrote:

From: Tracy Rousar <mountaingirl32@ sbcglobal. net>
Subject: Re: [Adults AMC] knees
To: amc_adults@yahoogro ups.com
Date: Thursday, March 11, 2010, 10:09 PM

 

Oh Man Tracy the only thing I can suggest is to try a air brace that would
give it extra support on the ankle that might help....

Tracy Rae

-------Original Message----- --

From: Brenda
Date: 3/11/2010 1:55:34 PM
To: amc_adults@yahoogro ups.com
Subject: Re: [Adults AMC] knees

Tracy! I just wanted to say I'm so sorry to hear that happened to you. Ouch
I am afraid I don't have any advice about the best way to heal. I hope
you are doing ok.

--- On Sun, 2/28/10, TRACY ULRICH <tautracy@verizon. net> wrote:

From: TRACY ULRICH <tautracy@verizon. net>
Subject: [Adults AMC] knees
To: "Arthrogryposis Group online" <amc_adults@ yahoogro ups.com>
Date: Sunday, February 28, 2010, 9:35 AM

Hello everyone.
Tueday night after class I lost control of my car and ran into a telephone
poll. Totaled my car and broke my knee cap and my ankles are screwed up..
can't walk on them. I'm still in the Hospital in the rehab section. I'm
not happy at all. I don't know what will happen with my schooling now.
Darnit, I can't believe I'm in this situation... again.
Does anyone know to best way to heal a beat up fused ankle? They want me to
walk with it, but it hurts too bad. I don't know if that is the best answer
I think it would be best to let it heal more before applying weight on
them.

Thank you for any solutions you might have.

tau
Tracy Ann

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[Non-text portions of this message have been removed]

I'm interested in this line of thought as well, but honestly, you'll either need
the strength to do it or a lot of support a la a chair atop the horse if he
can't support his own body with his legs.  You'll probably have a hard time
finding someone that makes such things for a living, but you might have some
luck just asking some saddle makers if they can do a custom job for you.

As a person with AMC who has tried very hard to do things he isn't supposed to
do, there is no amount of manufacturing you can do that won't be totally awkward
that will solve your fiance's problems entirely.  He still needs to build up
strength to do it or he will have trouble when/if things go wrong.  To that end,
you might try simply building muscle with a personal trainer and see how far he
gets with that first.  He might find that with some training, he doesn't need
expensive custom gear.  It takes time, though, so it all depends on how much
patience he has.

-Jonathan

On Mar 12, 2010, at 2:48 PM, whopinwheels wrote:

>
> I'd be interested in learning about this too! A few of my friends keep talking
about wanting to try out horseback riding, and I think it'd be cool to find a
way to make it work. My physical abilities are fairly similar to your fiance's
in that my hips don't open enough to straddle a horse and I need support to sit
up, but my balance is good enough to stand and walk short distances around my
apartment and at the office. I think it has something to do with my extensor
muscles being pretty strong, but the other muscles being weaker.
>
> I wonder if its possible to put some type of angled wedge thing on the seat
part a saddle? I've found if my hips are angled forward (imagine half
sit/standing on a low wall or bench)I can sit unaided. Plus being a little
elevated from the saddle might make needing to fully straddle the horse
unnecessary.
> --- In amc_adults@yahoogroups.com, "zhinka aka otter_woman" <otter_woman@...>
wrote:
> >
> > I have been lurking for about a month now. I wanted to make sure that family
members were really welcome to ask questions. I am in a spinal injury group and
some of the members there get real upset when outsiders dare to pose a
question,but it seems super friendly in here.
> >
> > OK bit of backround, I have a spinal injury that I am doing well with,
lucked out and is pretty mobile most of the time,no pain no gain type of
thing,but thats why they created pain meds. I cannot climb well and I try anyway
and when I tire out I lose my legs again so I ride horse.
> > My fiance has AMC and he can stand and balance enough to get to his power
chair but cannot walk more then lets say from the house to the car. His left arm
is losing strength fast and he is losing what extension he had. His right arm is
amazingly strong. I know he is upset that I had been bounding off and riding
horse and spending hours in the badlands and he cannot join me. I have quit
riding pretty much and I really miss it. I would like to see if he could join
me. He cannot straddle a horse as his hips do not have that mobility to let him
sit mounted normally,and he would need back support as he cannot sit upright
without support
> > Does anyone know of anyone that can design and make a saddle that he could
use? I tried holding him and going bareback but I lack the lower leg grip that I
need for that or that would work for short jaunts. I really miss going out,but I
feel guilty having a pleasure that he cannot participate in.
> > My horse lies down on command so mounting is simple,he is basically a bomb
proof horse and one can hunt while riding, used to go deer hunting on horseback
with my brother before my fiance started getting upset about having to be left
behind.
> > I am hoping someone knows of someone, I would like to continue being able to
ride, its the one time when I can go freely where I used to be able to go using
the horses legs because I cannot use my own.
> > thanks all!
> > and thanks for letting me post!
> > zhinka
> >
>
>

There is a local organization here, Ride To Walk that my be able to help you
find out the answer, if not they may be able to direct you in the correct
direction. Here is a link to their page.

http://www.ridetowalk.org/

Best of luck,
Kathleen

Kathleen,
My name is Lindsay and my husband and I are thinking of starting our family.  I
have AMC and I am only 4'7.  I am really interested in your pregnancy because I
am nervous about the idea even though we both want children badly.  Looking
forward to hearing from you!

--- In amc_adults@yahoogroups.com, "katebythesea2000" <keys2yourhome@...> wrote:
>
>
> Hi Lauren,
>
> I have AMC with all 4 limbs affected and am 5ft tall.
> I had my daughter when I was 26, I am now 53.
> Aside from back pain I had no problems during my pregnancy.
> Colleen was born by C-Section after 18 hrs. of labor.
> She was unaffected by AMC.
>
> Please don't hesitate to ask any questions you may have for me.
> Hope this helps.
>
> Cheers,
> Kathleen
>

Hello,

My name is Lindsay, I am 26 years old.  I have AMC.  I have a very petite frame,
I am 4'7 and only weigh 76 lbs!  My husband and I have been talking about
getting pregnant next year...hopefully the economy will turn around!  I am very
nervous about the idea even though we both want children badly.  This is
something that would be completely unknown to everyone we know.  I really would
like to talk to everyone or anyone who has AMC and had children or someone who
has any advice.  Please help me become less nervous!

Thanks!
Lindsay

Hello Lauren,

Did you get any information? I would love to hear from you!  I have amc and I am
4'7 and weigh 76lbs!  It would be great to hear from you!

Lindsay

--- In amc_adults@yahoogroups.com, "whopinwheels" <LSteinberg@...> wrote:
>
> Hi,
> I am wondering if there are any moms on this list who themselves have
> Arthrogryposis? If so, how did having arthrogryposis affect your
> pregnancy? Did you experience any any complications? Were you able to
> give birth naturally or by c-section? My arthrogryposis is relatively
> severe in that it affects all of my joints and I'm fairly small (4ft3
> and 72lb). Mainly seeking information.
> thanks,
> Lauren
>

I would suggest looking in to saddles for paraplegic. I myself use a power chair
90% of the time and have very sever hip contractors and am unable to actually
get into an upright position to stand do to the hips. however, i have been horse
back riding at a theraputic riding center on and off for over 15 years now. when
i go many months between ridding lessons it hurts like hell to straddel the
horse but its so worth the pain for the adventure. also, it has been the fastest
most effective way to gain range and strength in my muscles pretty much from the
chest down (it takes every muscle i got to keep me from flying off the horse
when trotting). I have so far only been able to use an ecestrain style saddle
the western ones require you to have to use full range in hip abduction (spreed
you knees all the way out to each side) which i have very limited amount of. I
am and have been for years looking to find a saddle that simple has straps that
can connect to
  the saddle around my upper thigh, of course you dont want to be strapt to a
horse that is not well trained and could buck, rear up, or take off threw a
heavily wooded area, that could cause sever bodily harm...lol

Ally

--- On Sat, 3/13/10, jingai <jingai@...> wrote:

From: jingai <jingai@...>
Subject: Re: [Adults AMC] Re: Anyone know of a saddle maker that can custom fit?
To: amc_adults@yahoogroups.com
Date: Saturday, March 13, 2010, 6:51 PM

I'm interested in this line of thought as well, but honestly, you'll either need
the strength to do it or a lot of support a la a chair atop the horse if he
can't support his own body with his legs.  You'll probably have a hard time
finding someone that makes such things for a living, but you might have some
luck just asking some saddle makers if they can do a custom job for you.

As a person with AMC who has tried very hard to do things he isn't supposed to
do, there is no amount of manufacturing you can do that won't be totally awkward
that will solve your fiance's problems entirely.  He still needs to build up
strength to do it or he will have trouble when/if things go wrong.  To that end,
you might try simply building muscle with a personal trainer and see how far he
gets with that first.  He might find that with some training, he doesn't need
expensive custom gear.  It takes time, though, so it all depends on how much
patience he has.

-Jonathan

On Mar 12, 2010, at 2:48 PM, whopinwheels wrote:

>
> I'd be interested in learning about this too! A few of my friends keep talking
about wanting to try out horseback riding, and I think it'd be cool to find a
way to make it work. My physical abilities are fairly similar to your fiance's
in that my hips don't open enough to straddle a horse and I need support to sit
up, but my balance is good enough to stand and walk short distances around my
apartment and at the office. I think it has something to do with my extensor
muscles being pretty strong, but the other muscles being weaker.
>
> I wonder if its possible to put some type of angled wedge thing on the seat
part a saddle? I've found if my hips are angled forward (imagine half
sit/standing on a low wall or bench)I can sit unaided. Plus being a little
elevated from the saddle might make needing to fully straddle the horse
unnecessary.
> --- In amc_adults@yahoogroups.com, "zhinka aka otter_woman" <otter_woman@...>
wrote:
> >
> > I have been lurking for about a month now. I wanted to make sure that family
members were really welcome to ask questions. I am in a spinal injury group and
some of the members there get real upset when outsiders dare to pose a
question,but it seems super friendly in here.
> >
> > OK bit of backround, I have a spinal injury that I am doing well with,
lucked out and is pretty mobile most of the time,no pain no gain type of
thing,but thats why they created pain meds. I cannot climb well and I try anyway
and when I tire out I lose my legs again so I ride horse.
> > My fiance has AMC and he can stand and balance enough to get to his power
chair but cannot walk more then lets say from the house to the car. His left arm
is losing strength fast and he is losing what extension he had. His right arm is
amazingly strong. I know he is upset that I had been bounding off and riding
horse and spending hours in the badlands and he cannot join me. I have quit
riding pretty much and I really miss it. I would like to see if he could join
me. He cannot straddle a horse as his hips do not have that mobility to let him
sit mounted normally,and he would need back support as he cannot sit upright
without support
> > Does anyone know of anyone that can design and make a saddle that he could
use? I tried holding him and going bareback but I lack the lower leg grip that I
need for that or that would work for short jaunts. I really miss going out,but I
feel guilty having a pleasure that he cannot participate in.
> > My horse lies down on command so mounting is simple,he is basically a bomb
proof horse and one can hunt while riding, used to go deer hunting on horseback
with my brother before my fiance started getting upset about having to be left
behind.
> > I am hoping someone knows of someone, I would like to continue being able to
ride, its the one time when I can go freely where I used to be able to go using
the horses legs because I cannot use my own.
> > thanks all!
> > and thanks for letting me post!
> > zhinka
> >
>
>



------------------------------------

Yahoo! Groups Links








[Non-text portions of this message have been removed]

Hello Lindsay.   My situation is a little different than yours since I am male
and didn't have to deal with the challenges of carrying the Baby.     But I have
4 wonderful children, aged 24 to 14 .. and my life, and my marriage, would have
been quite diminished if I hadn't had them.   So I encourage you and your
husband to look at your lives, and consider carefully if parenthood is right for
you.. and then to GO for it.

Ah.. but how best to go for it?
- Most AMC is not considered genetic, and certainly my children do not have it.
If the advice of your Doctors is that your AMC is genetic then you will have to
weigh alternative means of becoming parents against the risk of having a child
with a severe case of AMC.    Tough choice for you to make.. and no 'right'
answers for sure, so I hope they do NOT think yours is genetic.
- How ready is your body to carry a child?   I watched my wife do it 4 times,
and it is hard work for a healthy able bodied person.   If your AMC effects your
body in such a way as to put your life at risk then you might also want to
consider alternative means of becoming a parent.   Only you and your medical
advisors can evaluate this.   These forums are full of women discussing their
own pregnancies as mothers with AMC..   I would look at their comments to help
guide you in your choice.
- Can you, as a person with AMC be a good parent?    Most certainly YES.   You
will have many different parenting challenges in dealing with your disability.. 
but so does everyone else.  Your physical disabilities are only one of many
sources of parenting challenges.. and probably not your worst ones!   Our kids
love us despite our difficulties.. and I love loving them.    But don't kid
yourself.. there will be challenges.
   >> I can't move fast.  So my wife and I had to teach our kids
      to STOP when a parent said STOP.  No 'cute' running away in
      this family.   I had to discipline them early and often in
      what ever means was available to me to train them in this
      at a very young age.  By the time my kids were 12 months old
      it would have already been too late .. because they could
      out run me by 12 months!!
   >> Your needs may be different than mine.. but I encourage you
      to do your parenting intentionally, and in partnership with
      your spouse.   Everyone should do this.. but the need is
      much more obviously apparent in our case.   My wife and I
      (in the example above) made stopping mandatory, no matter
      which parent said stop.  I didn't want my kids to have one
      set of rules from Dad and a different set from Mom.   And,
      frankly,  working together as parents, discussing each
      child and their needs and how you are going to help them
      grow and mature is one of the best parts of parenting, and
      can really strengthen your marriage if you do it.  It will
      also make you much better parents than people who are not
      working together on this effort.
   >> You and your spouse may have to make some trade offs due to
      your disabilities, so you will have to discuss them, and
      "just deal" with them as needed.   My wife ran holding on
      to the bicycle seat for each of the kids.. as I yelled
      encouragement.  Man.. I wanted her job!..  but it was not to
      be, so it was important to be gracious and adapt together,
      important for us together, and for the kids, and for my-
      self individually.   You can't waste time or energy wishing
      for what you don't have.  And you DO have to be creative in
      what you DO do, in order to get to the best blessings any
      situation has to offer.
   >> Creative.  Don't let the 'traditional' way of doing anything
      stop you from finding ways to enable you to do as much as
      you can.    I walk poorly,  and I walk with canes.. but I
      have really big hands.  So from their very youngest days I
      carried my kids on one arm, laying down along my forearm with
      their legs hanging of on either side.   Most parents never
      think to do it that way.. but it was the only way which
      worked for me.. and my kids loved it.   They didn't know it
      was odd.    So don't let your disability keep you from
      enjoying the many blessings and gifts that are ours in
      parenting.  It is wonderful

I guess my last comment is mostly aimed at myself, and in truth should be said
to every able bodied parent.  As I get older and lazier .. it is easy to let my
wife bare the brunt of the heavy lifting as a parent.   Don't let your
disabilities (whatever they are) put an un-fair burden on your spouse.   Keep
looking for all the ways you can share the load and do the job together.


I go on too long.   But I hope you can sense my joy in parenting.  Not that we
are perfect at it.   But it has been God's best gift to my spouse and I .. and
in the end my AMC is the SMALLEST factor which impacts how good a parent I am.. 
and I am sure in your case, no matter how significant your AMC is. it will be
the least factor impacting your parenting as well.

Make 'em if you can..  Adopt them if you must,  but if you have the desire and
the willingness to parent, then don't let AMC hold you back.  And LOVE those
babies with all your heart.


With prayer and enthusiasm for you.   My best wishes for your decision..  ..

Steve P





--- In amc_adults@yahoogroups.com, "lgustafson712" <lgustafson712@...> wrote:
>
> Hello,
>
> My name is Lindsay, I am 26 years old.  I have AMC.  I have a very petite
frame, I am 4'7 and only weigh 76 lbs!  My husband and I have been talking about
getting pregnant next year...hopefully the economy will turn around!  I am very
nervous about the idea even though we both want children badly.  This is
something that would be completely unknown to everyone we know.  I really would
like to talk to everyone or anyone who has AMC and had children or someone who
has any advice.  Please help me become less nervous!
>
> Thanks!
> Lindsay
>

Hello lindsay my name is Brooke, I'm 25 I'm expecting my first baby in October.
So far i haven't had ne problems other then normal pregnancy symptoms like
sickness (sooo not fun) I'm super excited if you have ne questions please feel
free or you can email me as well good luck!

--- In amc_adults@yahoogroups.com, "lgustafson712" <lgustafson712@...> wrote:
>
> Hello,
>
> My name is Lindsay, I am 26 years old.  I have AMC.  I have a very petite
frame, I am 4'7 and only weigh 76 lbs!  My husband and I have been talking about
getting pregnant next year...hopefully the economy will turn around!  I am very
nervous about the idea even though we both want children badly.  This is
something that would be completely unknown to everyone we know.  I really would
like to talk to everyone or anyone who has AMC and had children or someone who
has any advice.  Please help me become less nervous!
>
> Thanks!
> Lindsay
>